Our Two Angels

Happy Birthday Ashley

2012-02-17T07:18:00.001-08:00

This slideshow customized with Smilebox

Remembering Ashley

2012-02-12T15:08:00.000-08:00

During Ashley's first hospital admission, when she was two months old, she had her first smiles...

We had all the tests done at that time. CT scans, EEG's, MRI, lumbar punctures and a lot of blood work. They could only tell us that she had Infantile Spasms (a certain type of seizures), but they could not tell us why.

With the help of an extremely diligent genetics doctor, we found out that Ashley's seizures were caused by ASLD. Ashley was four months old at the time, and it was her second hospital admission. I remember feeling a certain relief that we had an answer, and at the same time feeling stunned at the finality of the diagnosis. This disorder was very rare, and the research was minimal, with the most severe cases (Ashley being part of that group) usually ending in death at 4-6 months of age. The information available showed the ineffectiveness of seizure meds, and that seizures were never controlled.

The infantile spasms were a type of seizure that would occur in clusters, generally as the person was falling asleep or waking up. I remember spending hours at night trying to get Ashley asleep, and just as I would lay her down, another 45minute round of seizures would start up, and she would cry in between each seizure. One particular night, I verbalized my anxiety and frustration with angry words relaying how I would love to throw my water glass through the mirror, that I just needed to hear the sound of glass breaking on glass. I will never forget how Alex, in the middle of another sleepless night, leaned over, put his hand on my shoulder and said, "It's okay to be angry".

Those words were a gift, directly from God, and I praise God for helping Alex to love me in that moment when I wasn't very lovable. That's just one example of how the many prayers have helped us.

This is Ashley at four months old. She was still having multiple seizures and was very limp with absolutely no head control. This was about the time that my cousin, Elise, came to stay with us. She was a wonderful blessing. Respite didn't become available till Ashley was 6 months old. Elise's help was a blessing, and she gave up a summer job to come stay with us.

Ashley had a really good month when she was 5 months old. She smiled a LOT. Usually smiling at the ceiling, we often wondered if there were Angels dancing up there for her.

As the seizures got worse, the smiles decreased, and by six months old, Ashley was seizing for 2-3 days at a time. She couldn't sleep, and she lost the ability to suck. I remember spending hours trying to get her to take a bottle. Eventually we started using a feeding tube, and it wasn't expected that she would live very long.

For the next six months, we waited and watched. We had many moments, where it looked like 'this would be it', but Ashley pushed through. We did not admit Ashley to hospital for this, as we found it was important to stay home. Staying home, we focused on Ashley's comfort and on a peaceful home environment for all of us. We were set up with a nurse who would come to give us 'respite' so that we could have a 'break'. I remember thinking that it was a ridiculous idea that someone should think I need a 'break' from my baby. But I was counselled that I should accept the help now because if I didn't, then I wouldn't get any help later. And yes, I did need help later, but I always struggled with accepting someone in my home, looking after my children.

When I think of Ashley's first year, I remember the seizures and the unexpected smiles that would come and go. She would go for weeks without smiling, and then surprise us with a good day, and brighten our day with a smile. Almost as if she knew we needed it. I remember how peaceful she seemed, even with all the seizures. We could hold her for hours, and sometimes she would be vibrating with seizures, but still there would be a calmness. I remember cherishing that fifth month because of her smiles and the small number of seizures. I remember crying when the smiles went away. I remember the constant decision making in regards to medication, and how everyone seemed to think I should be the one to make the decisions. I remember teaching Alex how to insert the NG tube because I had to go back to work. I remember amazing friends, family and aquaintances that brought meals, or picked up groceries for us.

I remember God's hands working through many human hands. Don't ever think that your prayers aren't heard.

I remember a friend coming to take beautiful photo's of us with our dying baby, so that we would always have something special and beautiful to remember.

I love remembering all the blessings in the midst of the suffering. Sharing the journey, helps me remember and smile at the highlights of God's love shining through.

Clothes

2012-01-24T08:13:00.000-08:00

Dressing Mira in Ashley and Hope's clothes always gets me remembering. Mira wore this cute little green outfit on Sunday, and I remember how much I loved that outfit when Ashley first got it.

Mira has a little cold, so I couldn't get her to take the thumb out of her mouth, but you can see her anyway...

After Ashley started having seizures at 2 months old, we spent some time in the hospital trying to get them under control, but eventually went home with seizures that would cycle in clusters lasting up to an hour. The MRI had shown that her brain was too small, 'not enough white matter and not enough grey matter'. I remember sitting there in a stunned silence as they tried to explain to us what the MRI picture meant. I clearly recall thinking, "...just tell me if she's going to live or die.".

Leaving the hospital after that admission, we brought home our baby and left behind our hopes and dreams.

Ashley's seizures fluctuated constantly. In the summer or 2006, when she was wearing the green outfit that I was talking about, she was still having a LOT of seizures and a lot of discomfort. I went looking for pics of Ashley in that outfit and here's what I found...

Brodie was such a good sport with the picture taking. My cousin, Katie, took these photos for me. We kept pausing while Ashley would have a seizure, and then we would try again for another picture (we have about 12 more of these). I was trying so hard for a smile from Ashley. Now I am just so glad to have these photos, even with no smiles, because it shows Ashley just as she was. Ooooh, I could just squeeze her, she was so cute!

2012-01-14T09:17:00.000-08:00

Dear Ashley,

Your birthday is coming soon, and I seem to have realized that we have to celebrate it without you. I cry for so many reasons these days, but today as I try to get the energy to bring out your baby book, I am shedding more tears of remembering. It would be nice to finish your baby book, and have it to reflect on when we visit your grave. Just thinking about your baby book, brings on the reflections.

I remember the day you were born. After hours of labour, you suddenly came so fast that you had a moment where you stopped breathing and your heart rate dropped. I remember hearing the nurse call a code, and of course, I knew exactly what that meant. We prayed for you immediately. Within moments of your arrival, you were already lifted up in prayer. You rallied quickly and when we went home with you, we had already forgotten the minor blip.

I remember the first couple weeks, as you struggled to latch when I nursed you. I thought you were teaching me patience! I could not pull your head toward me, because you would arch away from me if I touched the back of your head. Instead, I would position you on the nursing pillow and lean in, waiting quietly until you were able to start sucking on your own.

Those first two months of loving you without the knowledge of your disability, was a blessing. I always had uncertainties, but also felt that I was hormonal and paranoid. So, I quickly put aside any feelings of dread.

When you were two weeks old, we saw your pediatrician for a regular appointment. I remember when he asked me if I had any concerns. I spoke an immediate, 'Yes', and then followed it by shrugging and stating that I had nothing concrete to base my concerns on. I told him of the eye flicking and of your back arching away from me when I tried to feed you. We decided that babies do all sorts of strange things in the beginning, and we would keep an eye out for anything else.

I remember trying to position you for a "One Month Photo" and commenting on your incredibly floppy head. I look at the photo and see your head drifting down to the side, and remember how long I tried to get your head into a nice position, and how baffled I was that you had absolutely no head control. You were a limp noodle for the first year of your life. Of course, it all became clear when the more obvious seizures brought us in to emerg for the first time.

That happened right after Easter, when you were two months old, Ashley. That was the beginning of a new normal for us, and I hardly even remember that first two months of blissful ignorance. But I do know that the blessing of knowing you without labels gave me something I needed when they told me that you would be severely handicapped. The word, 'handicapped', scared me and I didn't know how to deal with that. Then I looked at you, Ashley, my beautiful baby that I already loved and accepted just as you were, and I knew that no 'word' could make me stop loving you.

I remember sitting in the hospital room, staring at you in my arms and repeating, "I love you right now and always." All the negative power held in the word 'handicapped' was eliminated when I focused on loving you in the present. I love you still, Ashley.

Love,
Mommy

Where does that leave me now? I don't have her to hold anymore. What do I do with my tears and my longing?

Although I do this imperfectly, I will try to follow what faith has taught me in the last years. I will offer up all my suffering and love to Jesus. He knows me and understands me perfectly. I can cry out all my hurt to Him, as often as I want, and he will never grow bored or irritated. His merciful heart soothes my soul and eventually brings me back to the present, fully nourished and ready to love others with the power of His love. If suffering leads me to love, then I must accept it gratefully. But I am no saint, it is only by prayer and the power of God that I can be changed in this way.

Being present!

2011-12-27T14:19:00.000-08:00

For Christmas, Alex gave me a very thoughtful gift. He disregarded my practical list of wants (ie. cookie sheets, new pillows, electric jug kettle) and found me a digital photo frame. But he didn't leave it at that! He took the time to install all of our photos of Ashley and Hope onto the memory card, along with a 'Title Slide'. When I opened the gift, I was able to plug it in and watch the memories slide by. It has been wonderful, and tearful. Yesterday, I cried, and cried and cried (and I'm sure Alex was second-guessing his choice), but I was still glad to have the gift. It is an amazing thing to have such a thoughtful husband.

Today, we watched old video of Ashley and Hope as babies, and I am soooo happy. We have so many wonderful memories. It is so good to be reminded of all the good effort we made to create memories with the girls. It is good to see the times we spent playing with Brodie while Ashley smiled and Hope coo'd. It is good to remember that it wasn't always hard and difficult and stressful. Oh yes, it is very good. Today I feel at peace with my memories of Hope and Ashley, but I still have trouble believing that they are gone and no new memories will ever be made.

As I watch the photos drift by on my new digital frame, I am realizing something. When I took pics in the past, I always aimed for a nice photograph. I tried to catch a pretty smile, or a 'look' that I wanted to remember, or maybe set the child up in a position that looked 'normal'. Now, I find myself disregarding those pics in favor of the shots that show love. When I see someone holding one of my children with a tender look, or gazing at one of them, or just attempting to hold the girls even though it was awkward, then I smile. I love seeing that the girls were loved. Isn't that what life come down too? It's simply all about loving!

I know I've been struggling with thoughts of failure, as I remember how busy it was last year. I felt like I didn't get the chance to love because I busied myself too much. But isn't that how a mom of four kids is likely to feel at some point? Obviousely, I need to cut myself some slack, and 'yes', I know that's what you've all been encouraging me to recognize, but I needed to find that truth on my own. Today, after watching the video's and enjoying the slideshow, I finally knew that I did have my priorities straight pretty often. Showing love and choosing to act with love is what has brought me the most happy memories.

Activities and pretty clothes and a nicely decorated room? Well, those things mean nothing now, after the death of one's child. Because my best memories come with the photos where I was looking at my child and just enjoying the moment. I wasn't troubling myself about something in the past, or concentrating on what I would get ready for supper, I was just present with my child.

Life happens in the present, and meaning is found in the present, not the past or the future. It's a powerful thing to recognize that you need to be present with your child and love them right now. It changes how I interact with Brodie and Mira and I really hope I never forget this lesson.

Merry Christmas

2011-12-24T19:28:00.000-08:00

I tried to make a slideshow to share, so that I could wish everyone Merry Christmas. I couldn't do it. I started looking through the photos of this year, and past years, and I wilted. I'm not even sure why, but the heavyness persisted, and I just couldn't make a slideshow. I shouldn't be surprised, but I am.

I hope each one of you is celebrating the blessings in your midst!

Merry Christmas from all of us.

Emotions

2011-12-15T17:01:00.000-08:00

Something we learned in counselling is that one needs to continue processing a thought or emotion till you reach reality. That's how I remember the lesson anyway. We can't take a fear and just stay fearful, we need to think beyond it. When we were pregnant and worried about having another sick baby, we needed to acknowledge that it would be hard, that we might be upset, and then recognize that we would move past that to acceptance, just as we had with our other sick children. To be stuck on the feeling of upset that we would experience, would leave us in a constant state of fear and tension.

I think the same is true, when we process something in the past. As I walk through each 'first' and remember last year, I will have to acknowledge all my feelings, and only then can I move on. It is not a bad thing, and talking about these hard emotions, does not mean I'm not coping. I need to talk a lot, and right now it's all about the 'horrible feelings'. This does not diminish the beauty and blessing of Ashley and Hope's life. I am presently recognizing and acknowledging how hard it felt (the tension, the stressful ups and downs, the horror of watching your child die slowly in front of you, and the helplessness). It was a horrible situation. How can it not be, when you're watching your children die.

Think of teething. When Alex hears about someone's child teething, he jumps in and shares how awful it was when Brodie was teething. He talks about the crying, and the sleepless nights and the fussyness that wouldn't stop no matter what we did. He remembers it as a horrible stage, but it doesn't change the fact that he loved Brodie then, just as much as he does now. Every parent has a memory like that, and most need the opportunity to talk about it, to acknowledge it, and then bring themselves back to reality...and that's when you remember the fact that you survived it.
My horrible memories of watching my children die, started at the Brandon Christmas last year. Looking back you can see very clearly where the decline really began (Palliative Care always told me this would be the case). When you're in it, you work hard, and smile and hope for another peaceful time to come to your family because complaining about it doesn't get you much sympathy or make you feel any better.

But now? Now I remember the reality and although I did have wonderful cuddles, and there were definitely some peaceful moments, the reality is that we were dealing with one crisis after another. The girls took turns getting sicker, and I was still caring for a newborn and trying to make life normal for Brodie. Do you know how stressful it is to cancel your sons birthday party three times and then have to say that you just don't know when you'll be able to do it, because your other dying children are too sick, making it impossible to stick to a plan. The reality is that I was very, very, very stressed and tired. The reality is that I had given up in a lot of areas around here, and was just surviving at that point. If you didn't live here, you wouldn't know it, but my respite workers saw it, and coped with it.

Here's the point. If someone said to Alex, "Oh, it wasn't that bad (the teething), I remember Brodie smiling when I saw him.", wouldn't you wonder how the person could be so insensitive? Because there is no way, that that person experienced the whole reality of the teething episode, and Alex's memories should be acknowledged. When his remembering is acknowledged and listened to, Alex is supported. When his memories are contradicted then he's left with a feeling of being mis-understood, and then he shuts down, and shares no more. If you want to be supportive, you ask questions and try to understand, which gives the individual the outlet he/she needs. Processing emotions involves a few steps, and one of them is in the re-living of the emotion, but it's important not to get stuck there. Once we talk through that difficult emotion or experience, then we can remember that we also survived it, which brings us to the present.

Personally, I need to talk a lot to process what I've experienced, and that's why I'm grateful to those of you who support me as I continue to write. It is such a good thing. Especially because I can post on the blog whenever I want, right when the emotions start to flow, or when I have a moment of clarity that I want to share...like today.

That being said, I want everyone to know that my grieving and processing happen in nice little bursts, that are interuppted by happy moments with Brodie and Mira. So, you don't have to worry that I'm sitting here dwelling on negative stuff. I just dump the negative stuff right here on the blog, and then move on, unless I have more thinking to do.

Mira is presently walking all over the place and babbling. She's so cute.

Hugs

2011-12-09T06:13:00.000-08:00

I want to say thank you to everyone who sent me emails and left comments here on the blog. You helped me walk through the sadness and hurt that I was dealing with this week, and I am so grateful. The hugs were felt...thank you!

When I spoke of what was going on in my head, and how people would say I was doing well, I was speaking of the past when I felt I was just barely hanging on. It was always good to hear that someone thought I was doing well, and it was probably what kept me going, because I needed the encouragement. It is only now, when I look back, that I can see the struggle so clearly. And now, I wonder why I didn't let people help me more. But then, I always felt like I was in the 'eye of the storm' and barely able to see in front of me, much less figure out how to ask for help. The offers were always there, I just didn't always know how to direct people.

Over the years there have been so many helping hands that encouraged us, and I want to thank you. Meals, babysitting, dainties, and picking up groceries, were incredibly helpful. I don't want anyone to get the impression that we were on our own through this. The truth is, I still struggled but it's amazing how many times I thought I would lose it, and then someone would phone, or send a meal, or encourage me with a note. We were never alone, and that's why the we could find the joy in the journey. Forgive me for having to share the hurt in the journey, and thank you for letting me.

In the midst of all this emotion this week, I have found incredible joy in Brodie and Mira. Mira is trying to take some steps, and every time the music comes on, she starts bouncing. It's great fun...

Processing...

2011-12-08T08:15:00.000-08:00

It was good for me to write that last post. It prompted me to really think about what was really bothering me about remembering last years Christmas in Brandon. For me, that weekend was the beginning of 'the end' for my girls. That's where the real, physical sicknesses became prevalent and the foreshadowing began for both girls. I knew it at the time, because Hope and Ashley had not struggled with lung issues before that, and I had always been told that they would die of pneumonia. I knew it was bad for Hope, as we were driving out there, but when Ashley started throwing up, I knew it was very likely that she would have aspirated (that's when you breath in some of the vomitt into your lungs - not good). As I cared for the girls that weekend, I knew that this would not be good. Then tension, anxiety and emotion that comes with that knowledge is very hard to explain.

In fact, the tension and anxiety that come with travel is hard to explain. For some reason, I need to try. Picture me getting up at 6am to start the packing, prepping and daily needs (food and meds). Picture me focusing all my energy on remembering every detail to get through the day and trying to orchestra a perfectly laid out plan of take off and arrival, knowing that if too many things go wrong, my hopes will be dashed. My hopes were that we would arrive safely, in good humour, with energy to give hugs and visit and love my children as I took time with them before bed, then have energy to visit with my family and relax a bit. This was my goal, and it may sound simple but good humour does not come easily with a stress level of 200%.

Picture me getting through the day without taking a moment for myself, we get going shortly after Alex gets home from work (I did have respite help too, this is not a one person job). The drive is only a little stressful with Hope puking and struggling to breath (I remember talking to myself - It is OKAY, it is FINE.) We arrive, I encourage myself to push a little longer and keep going, I'll be able to rest soon. Mom and I start unpacking, getting the kids settled, we feel good because we've got the meds done and there's just a little bit more work...and then Ashley pukes...everywhere. All that work for nothing, and we have to start again.

My point is that my stress and anxiety were at the max to begin with, and it didn't take much to push me over the edge. People say that I appear to handle things fine, and I'm trying to explain that I don't. You can't see what's going on in my head. I needed to cry so badly that weekend, but I couldn't let myself. I was so overcome by the stress that all I could do was keep doing what I always do. Smile (with gritted teeth) and push on! I wish I had been able to cry because I know I was not approachable with all that stress and tension. I really needed a hug and a pity party, but I didn't know how to let go and allow that.

Now...I am crying. And I think that's a good thing. My family was wonderful that weekend (because I vaguely remember some hugs as I hurried and tried to keep up with 'stuff'), and I wish I had known what I needed then, so I could just stop and let someone in. I know they would have cried with me and I also know that I was not sending out warm signals. I would say that the most unapproachable people in your life, are probably the ones that are hurting the most.

So, now I feel better. I've had a chance to cry over my hurt, and recognize my need for hugs and tears, and my inability to let it happen. Although, I still think that I might have started screaming and not just crying if I had let myself share my emotion. This need to have someone understand is so strong. I hope I've explained well enough, and that perhaps you'll be able to make sense of my rambling.

It's interesting, after all those years of being 'capable', I find myself avoiding stress with a ten foot pole! I don't leave the house unless I have to, I instinctively recoil from any added responsibility, and I have to force myself to go get groceries. I think I'm rebelling! No more work, says my brain. I'll go with it for now, because I'm really enjoying time with Brodie and Mira, and that is truly a gift.

One Year ago...

2011-12-05T19:23:00.000-08:00

One Year ago, our house was a LOT busier...

(Dec. 4th, 2010)

And it wasn't a bad thing...

(Dec. 4th, 2010)

I still feel like the girls are gone on a really long respite weekend. I see these pics and automatically think of cuddles with my girls, and then feel the bewilderment of their absense.

(Dec. 6th, 2010)

Isn't it strange that it's taking so long for this new reality to sink in? I know I find it easy to distract myself with Mira and Brodie. But then, I find it hard to believe that Mira is one year older too!

(Dec. 5th, 2010)

I often feel like the past year didn't happen. I keep saying, "Mira, it's your first snowfall" or "Mira, it's your first hockey game", and then realize that I'm wrong...last year did happen, and Mira was here for it. Was I that busy, that I just can't bring the past year into my consciousness? Or am I avoiding?! Who knows.

I am finding it hard to write anything here, on the blog. I am finding that grief is not a pretty thing to share. It's not encouraging, or joyful, or hopeful. It's not even that interesting, in my opinion. I don't like to write about the fluctuating emotions, or about the energy it takes to be with people. I still like to be with people, but it takes everything I've got, and then I need to recover and just be alone. That's not what I'm used to, and I'm still learning how to balance on this teeter-totter of relief vs. grief.

It's a very different time for us, and a lot of my remembering is not very positive. I look at the pictures above and realize that we were preparing for our worst Christmas ever. I didn't even know it was that bad at the time, I just dealt with it. I find myself unwilling to sugar-coat anything anymore, so here it goes.

When we left for Brandon (one of many family gatherings), we knew that Hope probably had pneumonia. We left our home, knowing that she might not make it through the weekend. We brought all our emergency meds, and the "Letter of anticipated death", which we would need so that we would not have to call the ambulance if Hope died at the hotel. We drove the two and a half hours with disposable blue pads tucked around Hope, and the suction machine at the ready, so that we could help clear her secretions and puke before she choked on them.

We made it to the hotel, and as I sent Alex off to a hockey game, I told him we would manage just fine. Then Ashley started puking. It took a couple hours, but with my mom's help we got the 4 kids settled, cleaned up, meds given, and then I could feed the baby and go to sleep.

The next morning, I got up early because I was determined to have a better day. After getting Mira and myself fed and dressed, I took my time with Ashley. I enjoyed getting her dressed in her pretty outfit, settling her in her chair, and doing her hair. Feeling positive and looking ahead to a nice breakfast in the hotel, I turned to Hope. Then I heard it...the sound of vomitting. I turned back to Ashley and saw that she had vomitted everywhere, and it wasn't stopping. This was not a normal thing for Ashley, I just couldn't believe it. Seriously, I was ready to give up and throw a tantrum.

Now, I probably shouldn't write anymore about it. The weekend didn't get any better. Ashley got pneumonia next, and Brodie took an iron gate in the face that weekend, which probably needed stitches, but I didn't have the energy to take him to emerg. He still has a scar to remind me of that weekend. But I don't care about a little scar. I am sharing my hurt. Because that weekend was a perfect example of how hard I tried to have a 'normal, fun' time, like everyone else...and how impossible it was.

At one point, I gave up trying and just sat on the floor of that hotel room, nursing my baby, eating my slice of pizza...alone..., while my sick girls lay on the bed behind me.

I hate whining, and that's what it sounds like, doesn't it? I am sitting here, staring at what I just wrote, knowing that it shows how much I hurt right now. But do you see that? Do you see that I am hurting because I realize that it was never possible. I could never make my family function like other families. I couldn't relax and visit like everyone else, what was I thinking! I thought that I could work really hard, really fast and get up really early, so that I could get my kids ready all by myself, just like other parents. Then go to breakfast, the whole family (NOT leave my girls behind yet again), and enjoy a meal out in a restaurant which never happened anymore because of how sick the girls had become.

Why did I even go? Because I wasn't ready to give up on life. If I didn't get my family out there, in the real world, in real family activities and gatherings, then we would be alienated even more.

This isn't about the girls. I love them still, and will praise God for their time in our lives, at every opportunity. This is about me. This is truth, that I have not shared very often. This is the truth of my experience, at one moment of the journey. As I write this I am crying, because it is hard to recognize some things. Perhaps, I should have stopped trying so hard for someone else's 'normal' and just stayed home to enjoy our 'normal'.

That's what sucks about grief, you just keep rethinking and regretting.

Family pics

2011-11-17T16:36:00.000-08:00

Instead of snapping some pics on my own, I decided to ask someone to take our family photos this year. We decided to have them taken at the cemetary.

Hope and Ashley were buried at St. Vital cemetary. We're waiting till next summer to place a stone for them, so I had sunflowers at their graves. Unfortunately, if you go there now, you won't find them because I was asked to remove the sunflowers for winter 'clean-up'. Sigh...

Kim Olfert was our photographer (kimolfertphotography.com), and I met her through a friend. When I found out that she knew our girls, through the blog, then I knew we were in the right hands (and wondered again at the 'coinicidences' that remind us, we are cared for). It was a special moment for us, as we had our first family photos taken that would document our smaller family. Kim helped us make it a positive experience, and the results were wonderful.

The adjustment continues and I would say that we're doing well. We're happy to have visitors now, and accept invitations, but I'm managing my time carefully. I still appreciate a good amount of quiet, home time to deal with the fluctuating emotions.

Memory Tree

2011-11-03T09:58:00.000-07:00

A Tree has been planted at our church (St. Timothy's RC Parish) in memory of Ashley and Hope. Children's Rehab Foundation chose this tree and suggested planting it at our church in remembrance of the girls. We had a special moment to bless the tree with Father Phil, and Chris from CRF came to meet us at the tree as well.

I've forgotten the exact name of this tree, but it flowers, and I remember that 'lilac' was part of the name. As you look at the tree, you may be unimpressed, just because it is a little spindly, with drooping look because of the leaves that have turned brown. You may wonder if the tree will survive the winter, or if it will flourish and thrive. It's actually rather hard to notice this tree, in comparison to the bigger trees around it. The other trees might look at this new little tree with pity and think it doesn't have very much to offer.

What a great tree for Ashley and Hope! They didn't command positive attention, they didn't appear to offer very much, and they drooped a little. They were often unnoticed amongst the bubbly laughter of other thriving children. So, here is a perfect tree for us to nourish, and I love it that we can have something for them at the church where we said 'good-bye'.

We miss you Ashley and Hope!

Halloween pics

2011-11-01T07:59:00.000-07:00

I thought that I better post this years Halloween pics...

Mira was a dinasour and Brodie was a Ninja. They both had a lot of fun.

Today is the Feast of All Saints, or All Saints Day as some would say. We remember our loved ones who have passed away and are now alive with Christ. We remember the saints (Ashley and Hope have joined their ranks) and know that they have reached their desination and are now sitting in the presence of God, our Father in heaven.

Happy Halloween

2011-10-31T10:40:00.000-07:00

Happy Halloween, everyone. Yesterday we enjoyed making caramel popcorn, and carving our pumpkins. I was amazed at how much I enjoyed it. In fact, I didn't realize how little I enjoyed the previous attempts at pumpkin carving (in the midst of meds and diaper changes ect.). We have always made the effort to keep up with the family stuff, for Brodie's sake, but now I can really see how hard I pushed myself. Last night we really had fun, and I was amazed because I really thought we had fun other years. I guess we didn't have to rush this year.

When I realized that we didn't have to rush, I felt a little quieter and thought of Ashley and Hope. It is so good to remember them. It's kind of sad that no one can ask how they are doing anymore, because I like to share them with people. Some might forget about them eventually, and even now it appears that Ashley and Hope are part of the past. But here is a reality that you should know. One's child never disappears into the past. Ashley and Hope will always be in my present. When I get to share a memory of them, or talk about how I decorated their grave, or dress Mira in their clothes, then my reality is honored. It's good to remember.

Here is Ashley in October of 2009. We tried to dress her up in a costume that my mom had made for us kids when we were small.

Here is Hope in 2008, when we tried to dress her up as a cow.

We didn't take the girls out to trick-or-treat, and I didn't always dress them up, but they were always part of the family. Now of course, I kind of wish I had more pics of dressing them up. I have to remind myself that I really did do the best I could.

A little Hopey fix!

2011-10-19T18:54:00.000-07:00

When I made the slideshow for Hope's funeral, I placed a very special video at the end. It was taken shortly after Ashley died, and was the last time we had such wonderful smiles from Hope. Whenever I need a 'Hopey fix', I watch that video and now I'll share it with you...

It's been seven months now, since Ashley died, and two months since Hope followed her home to heaven. We miss you, Hope and Ashley.

Dirty white pants...

2011-10-14T08:51:00.000-07:00

When Hope was born, we recieved this sweet little outfit of white pants and a pink summer top. I remember thinking that no 'seasoned' mother would bother with white pants on a crawling baby, but for my girl who won't crawl, it would be just fine (sigh...).

Well, now I have a little girl who can wear those same white pants, and she loves to crawl. In fact, she does a great job of getting those white pants all dirty. Would you be surprised to know that I was thrilled to put those white pants on her and take her outside to 'break-them-in'?

Take that...white pants! I've got a baby girl who can crawl!

Can you feel my joy, my wonder, and even my laughter at my silliness?

Now, if only I could get her attention away from Brodie's water gun...

Ahhhh, there we go. That's the smile I was hoping for!

Continue or not...

2011-10-12T09:24:00.000-07:00

The same question keeps coming up, "Will you continue the blog?", and usually I answer with a casual 'yes'. I don't see why I shouldn't continue sharing the final stage of this journey, which is the grieving stage. The updates will be fewer and maybe some people will not be interested, but this is not my concern. This blog has not been about popularity or appealing to the interest of others. It has been a place to share this journey with the people who care. It has been an avenue of support as people read and try to understand how this experience has changed us.

I don't imagine that everyone will find it necessary or interesting to walk this grief road with me. I know that Ashley and Hope provided the life of this story and with the end of their lives, the story appears to be done. But I am not done! I am here, thinking about them and remembering them and trying to figure out how to move on. So, I will write and if no one reads, that is okay. I am guessing that I will continue for about a year, but that is not set in stone.

We just returned from a little get-away. Mira travelled very well and it was a treat to go with Alex on his work trip. Check out Mira on the train...

What a good little girl!

Tears are okay...apparently.

2011-10-02T10:57:00.000-07:00

I cried, finally. I have cried little bits, but the last couple days have definitely felt better. I referred to Karen's blog in my last post because it struck a chord with me, although I wasn't exactly sure why. So, I've been pondering things. Every time I cry, I feel a release and I feel better, but I often stop crying as soon as I think the words, "Finally, I'm crying...".

Fine, perhaps I don't need to cry too much because I've been having 'moments' for 6.5 years. Really? Well, I read Karen's words about the couple months after Joel died. She spoke of the 'aching numbness' that came instead of the tears (not that she didn't cry at all but more tears came later). With that, I realized that I want to cry. I don't want to be numb, I don't want to feel nothing, I don't want to do well. This is finally my chance to cry without explaining myself, why can't I let loose?

It sounds a little simplistic, to say that I needed to give myself permission, but I did. But it's not just that. I also needed to release myself from others expectations (or what I imagine might be expected). I will cry when I'm ready and that might be next month, or next year or in a couple years. If people are uncomfortable with that, well I'll have to live with that. I hate making other people uncomfortable.

Then I had to realize that I would probably not have 'perfect' crying moments. Moments where I would be in a nice secluded spot with a good friend, who would know just what to say. If I am waiting for that...well...it might not happen. I might actually cry at church, like I did today. Or I might cry at the grocery store (so annoying). The important thing I realized is that I should never expect someone else to know just the right thing to say. I can think of many, many moments where I am sure I chose very wrong words when someone was grieving. Oh, my heart hurts to think of it.

As I sat outside, taking some time to let it sink in...I decided that I could choose to trust in Jesus with all my uncertainty. I can trust him with my insecurity. I can trust him with my worries. I can trust him when the tears come and trust him when the tears don't come. I am not alone, either way.

Turning back to thankfullness, I praise God for the blessing of Brodie and Mira.

Normal?

2011-09-28T20:26:00.000-07:00

What's normal? I think I'm doing just fine in regards to my 'grief work', but sometimes I wonder if people are making judgements on the subject. I just read a fantastic blog post by my friend Karen. Please, please go read it. You can click on the link for Rainbows and Earthquakes to get to her site and read the post on Internal Assessment. I could copy and paste the entry here and call it my own words, but that would not be the right way to do things. So, I'll let you read it and you can know that I agree with her.

On a funny note...check out Mira's 'morning look'...

Happy Birthday Mira!

2011-09-24T20:22:00.000-07:00

One year ago today, we welcomed Mira into this world with joy and a little trepidation (not knowing what would come). Seven days later, we recieved the message on our voicemail stating that the genetic testing was negative for Adenylosuccinase Lyase Deficiency. I will never forget the awe filled joy and wonder that encompassed my every waking moment as I began to dream again. I held her and saw my baby, who I already loved but this time I could see a future. I could see future smiles and words, even walking and running. I cried when I realized that I could anticipate her little arms reaching for me with a hug. I cried more when I thought of Brodie helping her play catch and of Alex, hearing the word 'Daddy' from his little girl.

It felt like an awakening. I had carefully put those thoughts, dreams and expectations to rest with Ashley and again with Hope. But after Hope came our Mira...yes, our Miracle. And with Mira, I felt the familiar thoughts and dreams that come with a new baby, but this time I could let those thoughts flow, open that gift and anticipate future milestones.

As I sit here today, feeling emotionally spent and a little exhausted, I am so glad that we were able to have a little party to celebrate. Mira, you are one year old today. We love you!

Remember when...

2011-09-20T07:55:00.000-07:00

I've spent the last week trying to post the slideshow from Hope's funeral, but it isn't working. In the meantime, I've been having a lot of memories float by on my computer screen as the screensaver scrolls through my computer photos. Remember when Hope was smaller and we were trying to encourage her to use the switch toy (Feb, 2009)? The big yellow flat thing, is a switch, to turn on the music. If she pushed on the yellow pad, the music would turn on, and if she pushed again, it would turn off. It never really worked (in other words, she didn't care about it), but Brodie had fun with it.

Ashley tried the switch toy as well, but she didn't like how it vibrated when her hand held it down. She would jump when her hand accidentally pushed the button, and then she would start posturing. So, we didn't use it for her very much.

Remember when we had to wrap Hope as tight as possible to keep her arms still so that she wouldn't cry for hours? She cried a lot between Nov08 and Mar09 (inconsolable sobs), but eventually we found that high doses of Gabapentin helped the irritability.

You can see Lauren (one of our respite workers) trying to console Hope in the pic below, and of course, Brodie jumped into the picture to say 'hi'. This was in April of 2009.

I would say that we are doing fine here. Although it is still very strange to try and get used to this. I still pause in my day and feel like I'm missing someone, forgetting a task, or just realize that yes, this is the new normal. We went for a walk as a family last night and I had a moment where I thought, "Oh no, we're not all here, who's missing", and then realized that yes, it's just the four of us now.

These moments happen, and I'm not finding them unbearable right now. I'm glad that I can remember my girls and still share them with you a little. Perhaps I'll find it harder as I go on, but right now I truly feel God's powerful hand supporting me each day. And I give thanks...

Time

2011-09-14T18:27:00.000-07:00

Time seems to have slowed down. I feel like the funeral was just yesterday. Really, it feels like I've barely moved past that day, and yet I know better. I feel like I'm moving in slow motion. The day stretches out like never before. I get up, take care of breakfast and kids, get Brodie to school and play with Mira. I put her to bed and feel exhausted, thinking to myself, "it must be 1030 already", but it's only 9am. How is that possible? Every day feels incredibly long, still good, but long. It is the strangest feeling.

I'm starting to think that I've running a marathon for years, trying to keep up and now it's the cool down period. I actually had energy to empty the dishwasher at 8pm and then decided to make lunches for the next day. Wierd. Normally I would have been collapsing onto the couch by 8pm, after frantically trying to get all the kids settled before my energy would run out.

I've been able to take care of little projects each day when Mira naps, and it's a good feeling. I often find myself surprised when I realize I am enjoying a simple task like sweeping the floor. Maybe it's the thankfullness thing that I'm trying out. Thanking God is a good 'mind task'. But maybe I'm still feeling the relief that comes after the storm. I definitely miss Hope and Ashley, and I have my crying moments each day, but I also feel relief. The workload is hard to explain, and I could make it look easier when visitors came because I would do so much before guests came and usually have to cut out a lot that I would normally do for the girls. Even with the respite help, I struggled to keep up. It's not a bad thing to feel relief and I know that it is a normal reaction, so I'll just go with it.

So, now I have time and I'm going to be selfish. I'm staying home and letting it sink in. I know you'll understand that we don't want visitors yet.

Funeral Message

2011-09-08T19:33:00.000-07:00

I know some of you will agree with me, that Father Phil's message at Hope's funeral was perfect. I would really like to remember more of it. So, I'm going to summarize what I found meaningful and if any of you would share what you remember, then we might be able to get an accurate summary of his message.

The scripture reading was taken from Matthew 18

"At that time the disciples came to Jesus and asked, "Who is the greatest in the kingdom of heaven?" He called a child, whom he put among them, and said, "Truly I tell you, unless you change and become like children, you will never enter the kingdom of heaven. Whoever becomes humble like this child is the greatest in the kingdom of heaven. Whoever welcomes one such child in my name welcomes me."

"Take care that you do not despise one of these little ones; for, I tell you, in heaven their angels continually see the face of my Father in heaven. What do you think? If a shepherd has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray: And if her finds it, truly I tell you, he rejoices over it more than over the ninety-nine that never went astray. So it is not the will of your Father in heaven that one of these little ones should be lost."

I feel kind of funny trying to summarize a sermon, but here it goes. Father Phil emphasized our need to be dependent on God. When Jesus told his disciples to 'be humble like this child', we need to remember that children in that time were marginalized in society. Children were often considered a burden that had to be fed and taken care of, a member of society that contributed nothing until they were older. Small children were completely dependent on others for survival and therefore, held little value.

How hard is it, for us to be completely dependent? It is almost impossible. We think we can take care of ourselves and we generally do a good job of it. In fact, we feel rather proud of our accomplishments. Jesus is telling the disciples, 'be humble', not proud...'like this child', completely dependent. How many saints in the past have strived to grow closer to God? We know how much of a struggle it is to change our value system and find value in our dependence (ie. trust in God), instead of value in our accomplishments.

And then, there is Hope (and Ashley), our child who was dependent in the extreme. In our society today, one could say she did not contribute, she never gave anything, she only took and some might say she was a burden. I know that some might say, and probably have said, that it is better for her to die. Some people may feel relief that she has died, because the 'burden' has lifted. But in the eyes of Jesus, she was/is a saint. She was completely dependent on us, physically, and on God, spiritually. She did nothing to earn heaven, and is now found perfect in the presence of God. She has 'accomplished' more than most of us, ever will, in the eyes of God.

Now for my own words (although I'm sure my own words came through in the above summary). I've spent six years, trying to help people see that my 'special' girls have value; that the work involved does not make them a burden; that it is not better for them to die; and that we can all love them just as they are. Father Phil's homily at Hope's funeral, spoke the message on my heart, and I am grateful.

"be humble like this child"

Simple things

2011-09-04T07:55:00.000-07:00

I'm finding myself grateful for simple things. A walk outside; the sound of the wind in the trees; the giggles that come out of Brodie and Mira as they play. There are many soothing sounds here, in the midst of the frequent rememberings. I get it, that I have to walk through these memories. I understand that it's a hard time. I just didn't expect the 'bombardment'. Tiny little moments that drift through my awareness as I move about the house, constantly reminding me that my 'special' girls are not here anymore. After the first couple hundred of these moments, you start feeling a little fragile, and maybe a little crazy. And then I take a moment to give thanks. Yep, I can find just as many 'thankfullness' items, and I might as well balance the sad with the praise.

A wonderful friend/cousin gave me a book after Hope's funeral, and it is about giving thanks. It is the most meaningful, thoughtful and well-timed gift I have ever recieved. I am reading it slowly. I might share some here, another time. For now, I will continue what I have to do and hopefully, remember to give thanks as I go.

This morning, I was struck by the incredible blessing of big blue eyes staring at me. Staring at me with intent and focus, ready to follow my movement, just waiting...

Moving forward...

2011-08-27T14:34:00.000-07:00

We're back! After the funeral, we took a break and left the city for the Lake. It was a much needed retreat. The funeral was beautiful and felt so perfect. I was able to add a few special touches that I didn't get to do for Ashley's funeral, and that made me happy. We sang "Blessed Be the Lord" at the graveside and I sang it for both girls. And then I felt peace. I gave them both, the best that I had.

Moving forward from this point will hold a lot of unknowns, and I am so glad that we had time to rest together. It is truly amazing how nature can feed the soul and remind one how to be thankful.

Purple

2011-08-17T08:12:00.000-07:00

Have I ever mentioned that I picked favorite colours for my girls? I decided they needed to have a colour, so Ashley liked pink and Hope liked purple. For Ashley's funeral, Alex wore a pink shirt for Ashley. For Hope's funeral he is going to wear purple. He's a great Dad!

Anyway, it occured to me (with the help of a friend), that others might want to join in the purple fun. So, I'm letting you know that you are welcome to wear a bit of purple for Hope when you come celebrate her life with us. Anything purple is fine...a purple article of clothing, purple flower, whatever you choose is quite alright for Hope's celebration of life ceremony. And if you have nothing, don't worry...we'll still let you in the church...te he!

So the funeral will be at 1 pm on Thursday with internment following immediately afterward with just close family. Family and friends will be invited to the hall immediately after the funeral mass for a reception (roughly 2 pm). We'll ask everyone to go directly into the hall after the funeral so that you can watch the slideshow and have some food. We'll be going to the cemetary with close family and return fairly quickly, since the graveside service is short and St. Vital cemetary is close by. We'll look forward to mingling when we return, and hopefully won't miss too many people.

Funeral arrangements

2011-08-15T15:41:00.000-07:00

Today we focused on funeral arrangements. It's been a heavy day, with some tears but made easier by the supportive comments we've recieved here, and by phone, and by facebook. Thank you soooo much. Most of all, we were blessed by family today, who helped with the children and meals and cleaning while we made phone calls and wrote emails.

Hope's funeral will be held on Thursday, August 18th at 1pm. It will take place at St. Timothy's RC Parish on 135 John Forsyth Rd. There will be a reception and memorial slideshow to follow in the hall.

If friends and family so desire, donations may be made to the Children's Rehabilitation Foundation (http://www.rccf.ca/) which is the fundraising arms for RCC, which provided Hope with the expertise and equipment needed to make her daily life more comfortable.

Good-bye Hope!

2011-08-14T11:43:00.000-07:00

This morning we had to say 'Good-Bye' to Hope. My mom was with her when she took her last breath, and it was very peaceful. We were on our way home from church when Mom called to tell us that she wasn't looking very good. We got home shortly after she died and were blessed to have some crying time with her while my mom took the other kids outside. I'm so, so, so glad that Hope was with her Grandma when she died. We would have loved to be with her, but we know that it is a blessing this way too.

I am so glad that we have had some time with Hope. After Ashley died, we prayed that we would have a few more months with Hope (Wow, this is a really hard post to write)...and I guess we got it. It is so hard to let her go.

Yesterday, I bathed Hope and braided her hair. When I brought her over to the couch, Mira was reaching for us, so I sat on the floor with Hope and Mira for a moment. I'm so glad that Kayla snapped a photo. It will be the last one I have of Hope. Wow, that's hard to take, too. How does one wrap their mind around the fact that they can never again take a picture of their child. I no longer have my girls to share with you. How is this possible...

Funeral arrangements will be posted here.

Thank you

2011-08-12T18:02:00.000-07:00

Thank you for the positive response to my 'helper list', I wasn't sure about the whole idea, after I wrote it. But now I'm feeling good about it. I can't promise that you'll get a phone call, but I can promise you that I will make a call when the need arises.

Hope has not changed much. She still turns blue (mouth, hands, sometimes feet), when she has a seizure. She turns almost purple when we change her diaper, but starts breathing again when we turn her on her side. We don't sit her up AT ALL. No chair and no carseat. The wagon works well for her, when we go for a walk. She still sleeps most of the time. We increased her phenobarb and because the seizures have decreased a bit, she has had a few awake moments. In fact, she had her eyes open for about 2 hours one morning, but only once.

I still like to bath her and braid her hair. This was taken a few days ago, when Hope could tolerate a bit more movement.

Blue

2011-08-10T15:16:00.000-07:00

Well, normally I like the colour blue, but I'm not liking it on Hope. She's turning blue (mouth, hands, feet) today with her seizures and with each turn. She's still not waking up.

On the upside, Brodie had a great time at the farm with Grandma and Grandpa Allen. Fortunately, he got home in time to see Mira start crawling. Yay, for Mira. Not so 'yay' for me, who now has to 'baby proof', and find all the dust bunnies before she does. Then again, maybe I could just tie swiffer cloths to her knees and let her take care of the floor! Te He!

Today, I started a list. Surprise, surprise...I know. The list is labled, 'Helpers', because I can't seem to remember to ask for help when things get tough, and even if I think to ask, I usually can't think who I should ask (despite the many wonderful people who have offered help over the years). So, I've started this list, and if you want to be on it, you can email me.

I am preparing for the difficulty of losing Hope, as you can guess. I have heard that a second funeral after your child has died, can be double the intensity, and the months following could be a surprising downturn in energy and mood. Maybe if I expect the worst, then it won't happen. Either way, it doesn't hurt to let people know that there may be a need that they could fill.

A bit of sunshine

2011-08-08T12:25:00.000-07:00

We enjoyed our bit of sunshine last week. Mira and Brodie were outside almost the whole time. Mira really likes the grass, and was very content to sit on a blanket and play with grass, or a water bottle. Sometimes we would give her a toy, but she's so happy with the unlikely things, that we don't have to worry about toys too much. We also had a little visit with cousins...

During the days we were gone, Hope continued to worsen. Her seizures increased in intensity and she started to vomitt with the seizures. We've had some nice days with her since we've been home, but she's changing a lot. Even though some would say, "Oh, she looks good to me"....there is a lot going on that others might not see.

As of today, she is hardly waking up anymore. If she does wake up, she promptly has a seizure and goes back to sleep. We were getting worried about the intensity of the seizures, and had planned to talk to doctors about increasing meds today (especially because she is now vomitting with some seizures). But now, her arms and legs barely move with the seizures, as if her body doesn't have the energy to do what her 'messed up' brain is telling her to do. Her face still twists and she makes little squeaks and her hands will jerk a bit with each spasm, but no more arms and legs scizzoring. You might remember that Ashley had no more seizures in the last month before she died. This feels similar.

The worst part is her vacant stare. She just looks so lethargic and exhausted, and if her eyes do open, there is no real awareness. To me, it sounds ridiculous when someone says she 'looks good', but I'm rather sensitive right now. Of course, Hope looks quite peaceful and sweet when she's sleeping, so that's what people probably see and comment on. Perhaps it is supposed to be an encouraging comment. It's better if there is understanding and compassion.

I see the blue tinge around her mouth, and the way her skin marks easily so that we're very careful to watch for pressure sores. I see the way her hands turn blue with each seizure and sometimes don't pink up for a while. I see the shallow breathing, and occasionally irregular breathing. I see her not tolerating formula, and the struggle we have each day as we try to meet her nutritional requirements.

I'm telling you this, because I think some people mistakenly believe that we are 'just fine' (and therefore Hope must be doing okay). And I know that I usually present myself as happy and content when I'm with people. I like being with people. Visiting and interacting with people gives me energy. So, don't look at me and assume that Hope must be doing fairly well, just because I'm not falling apart. When I say "she isn't doing very well", I mean it. Yes, that phrase is very subjective and really doesn't give much information. That's why I have the blog. So, I can give you a better idea of how Hope is doing.

Thank you for caring enough to read this.

Quick update

2011-08-05T19:55:00.000-07:00

We're back. Hope has had a rough week (making it difficult to concentrate on 'fun/relaxing'). I'm tired, so I'll leave a bit of an update and hopefully get back soon to chat more.

It seems that Hope is having more violent seizures now, and she's puking with the seizures. Her eyes are still puffy, and right now she sounds congested, but that's because she just finished puking up some brown stuff during an awful seizure (9:30pm ish). I know this doesn't sound too positive, but it's what I came home to. So sad...poor Hope.

Still Sleepy!

2011-08-01T08:16:00.000-07:00

We still have some cold symptoms floating around here. I have been feeling quite unwell. Brodie and Mira seem to be mostly better. Hope is sleeping a lot. She's still coughing up green stuff, and her eyes are 'gunky' all the time (Mira had the same thing with her cold). She isn't having fevers anymore and her breathing is nice and even, so that's good. We usually see her awake for a few minutes and then she has a seizure and goes right back to sleep.

Today, we're trying to decide if we should go ahead with our plan to head out to Killarney. Hope is going to stay here with our respite worker. We won't be far, so we can easily come home. I'm just trying to decide if I'm comfortable leaving her. Hmmm, 'comfortable'? I doubt that I'm ever content to leave Hope behind, it just feels wrong. But trying to do something good for the rest of the family is usually wise, and I know Hope won't mind. I just have to talk myself into it.

So, you probably won't see anything here on the blog till the end of the week.

We've spent the last couple days visiting with our family from England. I think they enjoyed Mira quite a bit. I know Mira and Brodie loved all the attention...

And Hope recieved a lot of attention too. She liked her cuddles the best...

Sleepy Girl

2011-07-29T18:16:00.000-07:00

Hope is such a sleepy girl these days. She had a little fever today, and the tylenol helped. She's been very sleepy for quite a number of days now. She wakes up for a few minutes, and then has a seizure and goes back to sleep. At least when she's sleeping, her breathing is nice and even.

Fever

2011-07-28T19:18:00.000-07:00

Hope had a fever today of 102.4 F. She still hasn't gotten over the cold that the other two kids had. She's coughing up green/yellow sputum and for a while today she was working very hard to breath, and her heart rate was over 200 beats per minute. It took three hours to get her temp down, and then she started to settle. It was a rough day. Right now, she is sleeping peacefully and her temp is normal, and her breathing is steady. Hopefully I can rest up well, and find the mental energy for this next stage in the journey.

Family

2011-07-25T11:57:00.000-07:00

This is how Mira looked this past weekend. Today she still has a drippy nose, but she's much more smiley and energetic. Brodie was over his cold within a couple days. Hope isn't coughing as much anymore, but she still has thick yellow/green secretions. We'll keep an eye on her.

Despite this, the weekend was great. I was thrilled to be able to spend a lot of time with my Sawatsky family, who had come from all over, for a family reunion. Family is such a GOOD thing. Relationship is definitely worth the effort.

Nothing much...

2011-07-20T19:28:00.000-07:00

Nothing much is happening here, although I'm pretty sure all three kids have a cold. Brodie and Mira are coughing for sure, and I thought Hope was having her normal coughing, but now I think it might be a cold. She is coughing A LOT. It's not that exciting though, just normal kid stuff.

Alex and I managed to get away, by ourselves, for the weekend. Yep, that was definitely a good thing. We're still trying to figure out how to adjust to life without Ashley, so it was nice to get away and have a break from thinking and decision making. It's been four months now, since Ashley died, and I find grief to be a mysterious thing. I'm still trying to figure it out. All I know for sure, is that my normally organized, speedy, and multi-tasking brain has turned to mush and the best I can do is go with the flow.

I do have unexpected moments when the tears come, but please don't ask me why I'm crying. I don't feel that I should have to explain it, or that I should have to analyze it. There are so many reasons to cry and I'm just glad when they come, so I can let go a little. I should be allowed to cry at this point. Everything just feels a little unstable and since I don't know what to do about that, I'll just keep close to God and let Him guide me.

Cuteness!

2011-07-15T19:35:00.000-07:00

Okay, yes, I admit it...I can't get over how cute Mira is...and I am shamefully posting this pic that I love.

Te he!

I am still amazed at her ever changing expressions and cute little giggles. I love how she reaches for me when she's tired, and how she scrunches up her nose and almost snorts when she gets really excited. It's amazing to see her on her hands and knees, rocking back and forth, thinking about how she will get to that shoe she wants to chew so badly. How wonderful is LIFE?!!!

Hope is having a good week too. She's had a lot of cuddles today and I'm sure she'll have a lot this weekend too.

Have a great weekend.

Weekend outing

2011-07-11T07:33:00.000-07:00

Alex played fastball all weekend, and I decided it would be worth the energy to pack up the kids and go watch for the day on Saturday. Hope did really well, and even had a little nap in the afternoon. Mira did well too, but she did not nap...at all. Despite the heat and no nap, Mira smiled all day and clapped and bounced. Ashley J. and myself were very impressed.

Better!

2011-07-07T07:34:00.000-07:00

Yes, Hope is doing better. She's come through the latest vomitting episode and is peeing well again. Today we are having a quiet day at home.

Hope's birthday was made special when her cousins came to visit. The girls posed for a nice picture while the boys played downstairs.

After that Hope's caregivers came for a visit and we sang some songs to her. She was still vomitting during the day and evening, but I think she enjoyed the singing and attention.

I had made cupcakes for the occasion. I know it means nothing to Hope, but it sure was a treat for the rest of us, and treats are a huge help these days.

Today, Hope is having a good day. She smiled a lot during playtime this morning and enjoyed her morning excercises. Brodie is a great help in the mornings. It's nice to have him home for the summer.

Happy Birthday Hope!

2011-07-04T07:37:00.000-07:00

Happy Birthday Hopey!!! It is so sad that you started puking last night, but we'll cuddle you all day anyway.

I decided to share a slideshow with everyone today. It is the same one I made 2 years ago, and I modified it by adding some more recent pics. Hopefully you can see it okay...

Free photo slideshow generated with Smilebox

First haircut

2011-06-30T08:19:00.000-07:00

Hopey's fourth birthday is just around the corner, so it felt like the right time to cut her hair for the first time! Yep, I have never cut her beautiful curls...

And yes, it was a little sad to cut them off. But also a little exciting because it's a fun thing to do with my little girl...

She sat so nicely and didn't cough at all.

I hope her hair stays curly...

Now I feel like getting out the hair dryer and styling her hair, but she's gettting sleepy...

There ya go...off to sleep as soon as I get you comfy on the couch. Yay, we still have beautiful curls to play with!

Appointment Day

2011-06-27T15:29:00.000-07:00

We packed up and went to Children's Hospital today for a Neurology appointment. It was helpful that our Palliative Care team was able to join us for the apppointment. The team approach is very effective and I feel less pressure this way. Alex and I really wanted something to help Hope on her bad days, when the seizures continue for hours. The plan is to give an extra dose of Phenobarb when it's a bad day (basically give her a phenobarb load), and see if it helps. We really don't want to increase her daily meds because she often has good days, and we don't want to lose her awareness on the good days. It's okay to make her sleepy on the bad days though. Comfort, right? Right!

Hope had some good days on the weekend. We were able to bring her outside again...

Trying to crawl

2011-06-23T06:39:00.000-07:00

Hope did not continue to puke after that one post-zoo vomitt. Phew! She's doing fairly well actually. She's still coughing a lot and having seizures, but I'm able to get some cuddles and take her outside on the deck.

During one of our outside evenings, Mira was inching herself back, as she tried to figure out how to crawl...

Then she decided she'd had enough...

That's just how I feel too somedays!

The Zoo

2011-06-21T17:46:00.000-07:00

Brodie's class went to the Zoo today, and I've been sooooo wanting to join them. So, I did. Hope slept the whole time in her KidKart and Mira was great, just sitting back watching the kids. I think Mira enjoyed the energy from the kids quite a bit. The cloudy day was perfect for the zoo, and I'm glad it didn't rain. When we got home, I carried Mira to bed and then went to get Hope. I had just layed Hope down on her bed when she started vomitting (rather good timing, I thought). Then she went to sleep and hasn't woken up since. Maybe she won't puke again. Maybe the little outing was too much for her. Maybe I'm just glad we got to do something different with Hope and Mira. Brodie was very excited to have his sisters there.

Now Hopey....please, don't be sick... I'll feel awful for taking you out!!!

Lovely evenings...

2011-06-16T19:16:00.000-07:00

We have had some very nice evenings in between the rainy ones. Hope is still doing well, and really enjoying her evening cuddles. She still doesn't do well when I sit her up in the KidKart but she does smile a lot when she's lying down, and we talk to her. During the day, she is usually having a lot of seizures and then falling asleep, so the evenings are best for her.

This is our first summer to enjoy some nice green grass. I'm so glad we finally got some landscaping done. Alex has been working hard this spring.

And Brodie too! He wanted to show you his garden...

Bumpy ride

2011-06-13T19:53:00.000-07:00

Wow, this is a bumpy ride that we're on. Hope had a great day today. She had 4 wet diapers. Her breathing was much, much better and her lips were not blue. I took her outside for evening cuddle time and she did great.

We're experiencing the 'dips' that come when a child has a fatal illness. Perhaps you remember a while ago when I talked about these 'dips', before Ashley died. Palliative Care informed us that we may see numerous 'dips' where Hope is gravely ill, and then she'll bounce back because she's a child and still has quite a bit of reserve. One of these 'dips' will be the end (the reserve will be gone), but we might not know which one, and I'm trying hard not to obsess about predicting the end.

No predicting or guessing...just loving and holding and family time.

Weekend vacation

2011-06-12T19:55:00.000-07:00

We had a nice weekend vacation, right here in Winnipeg. Since we had two weddings to attend at the same hotel, we decided to book a room and have some fun. Ashley, our respite worker, was able to stay at the house with Hope.

Brodie and Mira were both very excited about the pool. Mira went crazy with the splashing. Remember how much she likes to slap at things? Well, she likes to splash even more...

Then we got ready for the wedding...

We were at the church early because Alex had a pre-ceremony job at the church. Brodie did a great job entertaining Mira...

It was so good to have some fun away from home, play a bit, enjoy some good visits with friends and family, and have a break from meal planning/preparation. Unfortunately, Hope did not do so well. She has been having fevers on and off. She has had only one, hardly wet, diaper per day over the last three days. Today we cancelled plans and sat with her. I watched her fingers turn blue and her breathing become more and more laboured. Then I took her outside for some cuddles, and by the time I brought her back inside, she was looking better. In fact, right now she has perked up, is looking around and making some little cute noises. Her color has returned to pink. She's still coughing a lot.

We'll see what tommorrow brings.

Getting outside

2011-06-09T13:35:00.000-07:00

Getting outside is always a good thing, especially getting out as a family. I know others might not understand why I create work for myself by taking Hope with us for outings, but it's important. She's important and she is part of our family and she is worth the effort.

When you meet someone like Hope, who doesn't appear to have very much awareness of her environment, you can remember this: Only she and God know the depth of her awareness. Therefore, we should always offer a 'hello', or perhaps a little 'hand-shake'. When we meet someone with a baby, we instinctively smile at that baby and don't necessarily expect them to respond positively to us. Hope is the same. She's a baby in a big girl's body. She likes it when her hand is held, and she might like it when we smile at her. We just don't know, and that's okay. That doesn't meen I'll be offended if you forget to smile at her. It's just a hint for those who may feel uncomfortable and unsure of how to approach a severly handicapped child.

Wet diaper!

2011-06-05T10:55:00.000-07:00

Yey! Hope had a couple wet diapers today. She's coughing up some yellow stuff and keeping her formula and meds down. It's looking good right now.

Soon she'll be able to join us on the floor for some fun. Last weekend, my sister and her family joined us for a day. The kids had a great time and Hope enjoyed watching them...

Sleeping

2011-06-03T17:38:00.000-07:00

Today Hopey had some very intense seizures back to back, after which she fell asleep. She has slept all day, and is still sleeping now. We've been giving her water all day, in addition to her meds and everything has stayed down, probably because she's in such a deep sleep.

This evening, Brodie and I decided to introduce Mira to ice cream. Check out the fun...

The ice cream was one of those expensive Klondike bars from the ice cream truck. Brodie had heard the music of the truck and asked to spend his money. When he came back he had bought something for himself and for me too. How thoughtful!

As expected

2011-06-02T19:23:00.000-07:00

Hope is progressing as expected. She was vomitting steadily till about 1pm. Around 2:30pm I decided I would try one med because she had a lull in the vomitting and I really hate to see her seizures escalating. Very slowly, one millilitre at a time, I gave one medication. She kept it down. At 3pm, I tried the second seizure med, which took me about 30 minutes to give (because I give it very slowly, kind of 'sneaking' it into her tummy). At 4pm I thought her stomach was doing fairly well, but at 4:30pm she vomitted some yucky stuff that was full of old blood. So, I waited some more. This evening she only had a little puke. Therefore, I am going to assume that she kept most of her evening meds down (although it is only 9:20pm and I'm sure she could still prove me wrong). If she does well tonight, I'll start water in the morning. We also use a few non-stomach meds to help with the vomitting. Olanzepine wafers which dissolve in the mouth and should be absorbed (if she would stop puking and drooling and spitting), and a Scopolamine patch which is commonly used for motion sickness. I don't actually think either of them help, but it's nice to try something.

These episodes follow a similar progression each time, and the main concern is that her kidneys will tolerate the dehydration involved and that she won't aspirate and get pneumonia. Actually, the main concern is her comfort, and I am so glad that she still appears content and relaxed (in between seizures and vomitting of course). I'm praying that she'll sleep tonight.

Vomitt

2011-06-01T19:32:00.000-07:00

Yep, I knew I shouldn't have posted that blog yesterday. See what happens when I say we're doing well? Hope proves me wrong. She started vomitting around 10:30 this morning, and she's still vomitting this evening. Of course, the seizures are getting worse and she hasn't kept anything down. Unfortunately, Alex is away on a work trip right now, but he'll be home soon.

All is well...

2011-05-31T18:20:00.000-07:00

All is well here. Brodie is enjoying school and we've finally set a date for his birthday party which was post-poned due to Ashley's illness, Hope's illness, Ashley's funeral, Hope's continued deterioration ect. It's been a tough run, and now it's time to attempt to climb out of the pit again (ie. pretend this is our new normal and hope it lasts). So, I set a date for Brodie's birthday party (a small party) and Alex laughed at me. "Jolene, you know what happens when you make plans...". Yes, yes, yes....I know, but Brodie deserves a party and I finally have the energy to make it happen. He's been a very patient little boy!

Hope is still having very intense seizures, lasting up to 10 minutes. She has 7 - 15 per day, but she still has smiley comfortable periods in between and doesn't appear distressed at all. I can't sit her up very long because she has trouble with her secretions still, but she sure does smile when we put Mira on the floor in front of her to play.

Mira is having fun chewing on her big toes when she gets her socks off. Too cute!

Waiting for warmer days...

2011-05-26T07:02:00.000-07:00

We've been enjoying the bits of sunshine around here, but will definitley appreciate some warmer days. When I have a warm afternoon I can take Hope outside for a bit, and it's nice to give her a change from the couch. She's still having a LOT of seizures. Yesterday she had seizures every 5-10minutes for a couple hours and that was hard to see. She eventually went to sleep. No vomitting though.

Enjoying the rain

2011-05-21T17:56:00.000-07:00

What a lovely day! I know some of you may not agree, but I love a nice gentle rain. I brought my girls outside on the deck to enjoy the fresh air and the sound of the rain. Hope has had some pretty good days. We can't do a lot with her, because she doesn't tolerate sitting up for very long. She's having a lot of seizures and frequently turns blue, just around her lips, during the seizure. Hope smiled a lot this afternoon while we were outside. I think she liked watching Mira.

Mira has learned how to clap her hands, and she gets pretty excited about it. Actually, we get pretty excited about it too! I'm still surprised at how much happy emotion I feel when I see her clapping her hands with enthusiasm and squeals. It's overwhelming to see these little milesones that we never dreamed we would experience again.

Okay today.

2011-05-18T11:23:00.000-07:00

Hope seems okay today. She's still having some pretty big seizures that put her to sleep and her breathing worries me at times, but she's still smiling and responding to us. So, maybe she's fine. Seriousely, I am just telling you what I see, and I am not going to give any predictions or timelines. I am so tired of trying to guess at what's happening. Right now, she is fine and that's good enough. Day by day, is all we can do.

Mira and Brodie are doing great. The best part of the day is when we can all sit outside and enjoy some fresh air.

Strong girl!

2011-05-17T07:53:00.000-07:00

Hope you are such a strong, little girl!!!

This morning, Hope has given me some little smiles in between the seizures and coughing. Her eyes get drowsy often, and I think she did get some sleep last night. Alex was up checking on her a lot, last night and said that she was sleeping until the seizures started closer to morning.

After the scare we had yesterday, I am very surprised to see her doing so well today. Her color is good, and her breathing is steady, although she's still coughing up a LOT of foamy, white stuff, and occasionally some thick, yellow stuff. But, NO FEVER! The fevers scare me, because Ashley's downhill slide involved fevers which she had never had before. Hope is the same, and I can't remember her with a fever before this. We are still probably looking at a grim picture right now, but like Ashley, we won't know how many dips there will be, until the end. So, cuddle time has become a priority.

Thank you, again, for the supportive emails and comments. I did notice that something happened to some of the previous comments (they disappeared), and I have no idea what went wrong. But don't worry, I did get to read them.

update

2011-05-16T14:45:00.000-07:00

Just a quick update. Hope's fever finally came down, and her mottled skin has turned pink again. She's fallen asleep and is breathing nice and even, at a good rate. Yep, she looks lovely...go figure! This feels like one of those really big roller coasters. You never know what's around the corner.

Sliding downhill

2011-05-16T09:02:00.000-07:00

Yesterday, I sat down at the computer a few times and meant to update the blog, but I was distracted from the task each time. I wish I had made it happen yesterday, because today is not so great.

Hope was doing well. We were able to bring her to church with us on Sunday, and I had some nice cuddles with her during the week. The weekend was fantastic. We enjoyed the warm weather and started a project. I even put a summer dress on Mira...

The last couple evenings, Hope has been crying. Such sad, sad cries, with great, big tears, and then she falls asleep. This morning she had a big seizure and then started shivering/shaking. She was cold to the touch, and she had goosebumps, so we covered her up. But the shivering got worse and she started looking mottled, so I checked her temperature. Not good. She has a temp of 104 degrees Farenheit. I gave tylenol and got rid of the blankets. We're turning her every 30 minutes and using a cool cloth on her forhead. Yes, I do have help today, and I've called Alex home.

Right now, it is 11am, and she is not looking mottled anymore, and her skin is nice and pink. But the tylenol has not helped, and her temp is still 104 degrees. Her breathing is a little laboured and fast, and she has yellow, thick sputum (which some of you may not care about, but my nurse friends will be desperate for details). I would guess that she has a pneumonia. I will not guess if she can get through this.

Whatever happens in the next little while, you can pray for us. Either way, this is hard.

Better

2011-05-10T17:05:00.000-07:00

Hope is looking good again. She's still coughing up a lot of yellow secretions and that's a good thing. I was able to hold her on the deck and listen to the rain, which was great because I was having a 'crying' day. You may get tired of reading up the 'ups and downs' that Hope endures. Perhaps you even have a moment of thinking "Oh bother, here we go again". I sometimes consider leaving it off the blog, but then decide that most people are supporting me through the ups and downs and don't mind hearing about it. Despite the fact that her vomitting episodes are familiar, they still bring on the same feelings of hopelessness and painful helplessness each time.

Now that they are coming so often, I'm not finding the time to deal the emotions involved. Apparently I am a little 'slow' when it comes to processing these emotions, because I always function well in the crisis. Then I have a couple angry/sad/disgusted/grouchy days about a week after the event. You may have noticed that I don't broadcast these days on the blog...te he! I'm sure you can imagine how well this works for me, with the vomitting episodes happening every couple weeks. I'm rather glad that I have come to the conclusion that I am allowed to be sad, and that I can still function while I'm sad. I just slow down, play some music and remind myself to put away 'the list'. I've decided that being sad is just fine, and if I try to avoid it, then I get angry. It's OKAY to be sad and yes, it always passes. How could it not, when I have little cuties all over the house...

Coughing and awake

2011-05-09T05:52:00.000-07:00

Hope coughed up some thick, yellow stuff this morning. I'll take that as a good sign. She's also very quick to open her eyes when I turn her...and she's still having seizures and wet diapers. All good signs (even the seizures), which leave me to believe that she's not dying right now, not today.

Hmmm

2011-05-08T10:54:00.000-07:00

Well, I honestly can't say for sure, which direction Hope is going. She has stopped vomitting now, but is very pale, with breathing that changes from slow and shallow, to fast and 'shivery'. Her lips were pale this morning, almost white, and it bothered me so much. It was just too similar to Ashley. Right now, she has pinked up a little and her eyes are open, but she's very, very tired. So, we will continue to love and pray, as we wait.

Yesterday was Brodie's First Communion, and we are very proud of him. It was a lovely ceremony and we had a small celebration afterward, at our house.

I'm glad we were able to make the day special for him. At the end of the day, I was a bottle of emotions, just ready to explode. All I really wanted to do all day, was sit and hold Hopey...so, that's what I'm doing today.

and NOT so well...

2011-05-05T20:19:00.000-07:00

This is becoming a rather annoying pattern. First, I post a blog that Hope is doing well, and then 'oops', she's puking again. She started vomitting today at 1:30pm and hasn't stopped. The seizures have been really bad for the last couple days, and I figured this was coming. Although I had hoped we would have a few more days of smiles. Poor girl.

On a different thought. Here's a photo of the kids and myself in 2008, when Hope was 7 months old...

and then you'll see me holding Mira (7 months old), just as she was waking up the other day...

and Mira with her Godmother, Miranda...

So, there you have it. I keep getting comments about Mira looking so different from my other kids, and I keep saying that she looks like Hopey! Can you see it?

Doing well...

2011-05-03T09:18:00.000-07:00

Hope is better and full of smiles. You should see how excited she gets when we have 'playtime'. Playtime is her stretches and excercises, which she loves. She's responded well to the diazepam and isn't quite as stiff, but her increased tone has made it obvious that she's changing. Her feet are so twisted now that I can't put her in the stander, or put shoes on her feet. We have to decide if we're going to make special splints for her feet, so that we can continue to use the stander. The stander isn't a necessity, so I'm not sure that I'm going to bother with it. It is nice to have an alternate position for Hope in the stander though...and it's so good for her lungs when she's standing upright.

Brodie is still fabulous with Hope and Mira. You can see Brodie and Savannah (our baby-loving neighbour), in the photo below, with Mira. Lately I've been making good use of Mira's "slappy hands". I sit at the piano with her and let her slap to her hearts content. She loves it!!!

Not so bad

2011-04-29T06:51:00.000-07:00

I think Hope is already doing better. This episode was not so bad. She still had a lot of dry heaving, but not as much vomitting. She's still stiff and having little 'sweats' occasionally, but she's smiling and alert. So, I'll go with that. She's smiling, good enough.

Mira and Brodie are doing great. I'm exhausted.

Puke!

2011-04-27T19:30:00.000-07:00

Well, that lasted long! We found Hope in a puddle of puke this morning, but the rest of the day wasn't as bad as usual. She had some moments of stomach heaving but no more puking. Maybe she won't be as bad this time. The other problem is that she's having these little 'sweats' where we find her with beads of sweat on her face, and we remove blankets and she cools down. But then she's shivering, so we give her back the light blanket...and then she starts sweating again. I'm not too sure what's up...we'll see.

Here's a pic from last week, when Hope was doing so well. She definitely has more visual ability than Ashley had, because you can see her smiling at Mira, when we place her strategically!

A Happy Easter Weekend

2011-04-26T15:20:00.000-07:00

We had a very good Easter weekend. It was great to leave the city and go visit family at both farms. Mira and Teagan had some fun when we're at Kyla's farm...chewing on things of course. Brodie had fun at both farms because he had cousins to play outside with.

Hope did very well. She had a lot of smiles for us and even seemed to enjoy the travelling. She only had one little puke on the way back into the city (just to keep us on our toes)!

Hope is still rather stiff and kind of jerky and twitchy. Her feet have twisted to the side now probably because her legs are stiffened straight out most of the time. We're still making increases with the diazepam, so we'll see if it helps eventually. In the meantime, she is very happy.

A good week

2011-04-22T13:26:00.000-07:00

Hope has had a good week. She's been smiling and sweet and full of coo's. The big change for her is that she is extremely stiff. It's hard to bend her body to get her in the carseat. We've started Diazepam, but we're taking it slowly and not making increases very fast. So, it will take a while to get good results, but this way we won't overshoot and make her too sleepy.

Hope has always been floppy. It was Ashley who needed increases in the Diazepam all the time. This is such a big difference for Hope, and we're all noticing it. We're trying to do her exercises and stretches 2-3 times per day and give her more position changes. We've been massaging her legs too, and although she loves the attention, it hasn't helped.

Have a wonderful Easter weekend.

Remembering

2011-04-18T08:22:00.000-07:00

Today it has been one month since Ashley died. What a strange thing...to have a child that is not here. I'm not sure how I'm supposed to feel and sometimes I wonder if maybe I'm not very good at 'feeling', because I actually don't cry very much and I don't feel horrible.

It's hard to believe that she's actually died and gone to heaven. Perhaps I have a really strong protective mechanism that stops me from thinking about it. Or perhaps I grieved for so long, that the cup of grieving has very little left in it. Does that mean I didn't love her enough while she was here? But I know that I loved her, and I put a lot of effort into caring for her in the best way I knew how. Am I feeling okay, because I accepted her death a long time ago? It wasn't a shock to us, like it could be in another situation. Perhaps, it is the Grace of God. It has nothing to do with my strength and everything to do with His!

I've had an ongoing thought that has helped me understand myself and this process. This journey reminds me of climbing a mountain (although I have never climbed a mountain). As we climb this mountain we have experienced some setbacks, some struggles, lack of energy and sometimes it feel like we won't make it, but we've persevered. With Ashley's death, I feel that we've reached the summit. We've carried her as far as we could and now we can let God take her the rest of the way. It feels like a victory and we can breath a sigh of relief, knowing that we did not fall down the side of the mountain, or leave our children behind, or even leave each other as we struggled. God is smiling down on us, as we feel the cool crisp air, and become aware that our arms are now holding three children...instead of four. The top of that mountain is a beautiful place.

Now, I was thinking that I would get a little rest as we carefully moved down the mountain, but I was surprised when I realized that we are not done. We may have reached the summit of one mountain, but it was hiding the next mountain and we will have to continue our journey with Hope. Thankfully, this mountain has a more defined path, and we can use the lessons we learned as we climbed before. It is not a bad thing to continue on this journey and our steps are more sure now because we have come closer to God.

I was looking for photos of Ashley and wondering what I could share on this day of remembering. I can't believe that I have no new photos to share, and yet, how could I? She isn't here. Well, this is what I have to realize isn't it?! So, I returned to the 2009 photos, and went to April, where I could find Ashley in her pretty Easter dress. I remember thinking how cute that dress would look on a little girl who could walk, and now I'm crying...because of course, Ashley is walking now!

A Trip...to ER?

2011-04-15T13:58:00.000-07:00

Yep, we took a little trip to Emerg today. While I was out for a bit of respite, my helper, Ashley J., called to tell me that we had a problem. Hope's G-tube (feeding tube) had fallen out, and yes, Ashley had tried to put a new one in but it wouldn't go in. So, I rushed home, thinking that I would have 'no mercy' and just shove that thing in (because I had no intention of letting Hope have surgery to get another one, and I just don't go to Emerg if I can help it). Well, my attempts made no difference. Hope's stoma had swelled instantly and closed the hole to a very small little opening. While I was on my way home, I had asked Ashley to find the bag of nasogastric tubes that I still had from years ago. She found them and inserted one into the hole so that it wouldn't close any further.

So, we packed up Mira and Hope, brought all the meds and tubes and suction machine, and started off for Childrens Emerg (anticipating a long stay). I was very impressed with our nurse. She was able to dilate the hole for us, and get the new tube in with very little trouble, and we didn't even have to see a doctor. She even gave us supplies so that I could do this at home, if it ever happens again. Back home we went, and we even beat Brodie's bus home. What a fun little adventure! Of course, it helped that Ashley J. was able to stay longer and help me with the packing, travelling and unpacking.

Now, Hope is back on her couch, looking fairly comfortable. I did give her some tylenol because I'm sure all that poking was not fun for her.

We did have a little moment when we checked in at Emerg and I hadn't mentioned that Hope is palliative care. They check vital signs at the triage desk. Hope's oxygen saturation was only 91% and her heart rate was 142. I was sitting there looking at the numbers and thinking, "Oh, that's interesting...I always wondered how her sats were...". Then I noticed the triage nurse watching the numbers with a look of concern, and then I remembered to mention that Hope is palliative care and she shouldn't worry about the numbers. She nodded in understanding and then we were promptly moved into a room, where our nurse showed up fairly quickly. I wonder if they thought they should keep us moving, just in case (Te he... they don't know how resilient Hope is).

Smiles!

2011-04-13T12:23:00.000-07:00

Hopey is having some smiles today. Actually, she is having lots of smiles and happy little coo's. She has not thrown up any food or meds, and she has had a really wet diaper. Yay! She's looking good...hopefully better.

Mira has two teeth right now, but is still chewing on everything in sight and drooling like a champion! We tried to get her to chew on the soother one day, but she didn't like it much...

A little step back

2011-04-12T17:08:00.000-07:00

Hope's not quite better. She vomitted up every bit of her meds and water this morning. She had one wet diaper, but nothing since. Now, she's sleeping and she's kept her afternoon meds down. I'm just starting to give her evening meds. We'll see how this goes.

Hoping for Hope

2011-04-11T09:15:00.000-07:00

Hope is following her usual pattern and looking better today. I gave her morning meds very, very slowly and then set up the pump to deliver a steady (but slow) drip of water into her stomach. She is sooo dehydrated right now. Now, we wait for a wet diaper and then I'll breath easily again.

I told Alex yesterday, that Hope seems smaller. It looks to me, like she has shrunk (he laughed at me). Her cute little head seems smaller, her rib cage is sunken in and her limbs are loosing that nice plump look. Of course, that makes sense with all that she's been through since Christmas. I don't like this 'fading away', and I'm still hoping that I can get her to tolerate more food so that I can 'plump' her up again. Hoping for Hope, that's what I'm doing. Hoping that I'm wrong about this downhill spiral.

It's so nice and quiet in the house today. I have had my cuddles with Hope and Mira. Brodie is off to school with his 'vehicle' that he made for his science project. Music is playing and I have time to think and pray. It is a good day.

Mira is starting to sit up. Her favorite thing to do is slap at things. She is not a gentle girl. She's got some power to her. I can see already that we'll have fun getting to know her as her personality comes out. Mira had some help learning to sit, from her cousin Teagan who is a very polite and smiley little role model...

A good week until...

2011-04-10T12:42:00.000-07:00

We had a GREAT week. Hope was smiling, she tolerated her full volume of formula and she enjoyed all her daily activities. Friday was Brodie's chapel at school and Hope was able to come with me for that too. Our respite worker, Ashley J. was along to help...thankfully. Then Hope had a little 'puke' on Friday night...and I tried to ignore it. That didn't really happen...right? Saturday she seemed fine, so we continued with her normal routine, until 5pm when she started puking up buckets of formula which was not digested at all. Her stomach is not working again! Luckily, we always have her situated for potential puking (as you can see in the photo above), so we only had a little mess.

Today Hope is looking pretty bad. Her eyes are puffy, with purple bags underneith from all the heaving. She's seizing constantly from lack of seizure meds, and she's still vomitting up some blood-tinged emesis. Yep, that's depressing. It doesn't matter how many times we see this, it is still awful.

I know it's taken me a while to post, and I'm sorry that you might have been wondering how Hope is. Thank you so much, for caring enough to wonder about us. I was going a little crazy this week. I even had a few moments of panic when the workload felt like too much and I messed up a couple appointments. I started wondering if this is what grief does to a person. I wondered if maybe my brain was becoming resistant to the constant pressure and it wasn't going to work anymore.

After much consideration and a lot of venting, I realized what the actual problem is. I can't handle any external pressure! I CAN take care of my kids and even my house (if I want to), but I can't take care of anyone else (no coffee dates, no showers, no visiting, no parties, no planning ahead). And of course, no one expects me too! We may be feeling 'okay', as I told you but we still need to take time to walk this road of grieving and deal with the moments that come. So, as of now, I am letting everyone know that I am taking it one day at a time ( because letting people know this, makes me feel better about saying 'no'). I need to feel what each day brings. If I decide on a particular day that I feel like a visit, then I may say 'yes' to a friend, but I can't plan ahead and have that pressure to show up and ignore what I really need.

The days when I need to be home alone with my children are coming more often now, and I think it's because Hope is so unstable. I don't feel like we have a lot of time left with her, and I know you'll understand that. I'm not going to guess at a time-line, but I will go with my instincts which tell me to concentrate on my family (and even myself) right now.

Yeah, Hopey!

2011-04-03T12:48:00.000-07:00

Yeah, Hopey...you are finally looking a lot better. Hope was able to enjoy cuddles and sitting up in her KidKart yesterday, for the first time in weeks. It has taken her 3 1/2 weeks to recover from the latest vomitting episode and I am so glad she didn't follow Ashley's lead! It has definitely been a sobering thought, that we might lose both girls in such a short time. We've been slowly moving out some of Ashley's stuff, which hasn't been as bad as you might imagine, but it would be horrible if we were giving up everything for both girls.

It might be helpful for people to know that we really are OKAY. Yes, losing a child is a very hard thing, and we will be dealing with this loss for years. But we have also been grieving in small doses, for six years, which gave us time to love Ashley and accept her limited time with us. Nothing was taken for granted and each year was cherished. So, right now I will tell you that we are feeling fine...but I will reserve the right to change that sentiment in the future. I just have no idea how I will feel in the months to come. So, if I start crying for some reason...months or years down the road...I'll trust that you will remember that grieving is not predictable. Also, it's okay that you may not know what to say to us, because we don't know what to say back! A hug is always safe.

Now, back to the normal stuff. We celebrated the beautiful weather yesterday by hosting some of the neighbourhood kids. You can see Brodie in his Calgary Flames jersey below. Mira was mesmerized by the hockey game in our driveway!

This morning we went to church and Hope slept through the whole service, but she looked cute anyway! When we got home, we got her into position for some tummy time and Brodie promptly scooted in to cuddle with her. He's such a great kid.

Thank you SO MUCH, to those who sent food (but we don't need anymore). I had no idea how much work and decision making was involved with funeral planning. The food that came after Ashley died was an incredible help and more than that, it was such a treat. It was all so, so tasty and I definitely think food is a comfort. I had no time or energy for meal planning or prep, so it may have been a KD week otherwise.

Just one more 'Thank You'. We have recieved many e-card notices when donations were made to RCC in Ashley's name and this is appreciated and applauded. Thank you so much!

Little smiles

2011-03-30T14:32:00.000-07:00

Hope woke up this afternoon and has been giving us some smiles as we cuddle her. She's not throwing up today, and she's having some wet diapers. We haven't gotten her feedings back to normal yet, so we'll keep working on that.

Oh Hopey!

2011-03-29T18:50:00.000-07:00

Oh, Hopey...why can't you just be better? Last night we had wonderful smiles and cuddles and even some 'coos' from Hope. She was just wonderful to hold. This morning we found a puddle of blood-tinged puke to clean up and Hope struggling with secretions. She has barely woken up today, and she only had one wet diaper, but don't worry she's been breathing very peacefully for the rest of the day. It seems like we're one step forward and a couple steps back these days.

Today I went to a funeral for Joel. Joel is the 2 year old son of my friend, Karen, who's blog you can see in the sidebar. Joel died on the day of Ashley's funeral. Now, Karen and I have even more in common and we will be walking this journey together for years to come. This isn't a sad statement, it's a statement of wonder! How blessed am I, to have a friend who understands my unique journey, and who's journey I can understand in turn? The timing of us meeting just a little while ago, speaks of God's hand at work. See how your prayers for us have been heard?

A better day

2011-03-27T19:40:00.000-07:00

We made it to church today. I had to suction Hope on the way there, and on the way back. She is still coughing up a lot of secretions, but she has not had a fever today. Hope slept most of the afternoon, and then woke up to give us some very sweet smiles this evening. Maybe she is getting better.

Tommorrow

2011-03-26T20:18:00.000-07:00

Last night we were horrified when Hope started vomitting again. She hasn't recovered from her last episode and I just can't imagine how she can go through it again right now. But today, we were able to get her meds and water into her very, very slowly and she didn't throw up. She didn't have a fever today (she did last night), and she slept most of the day.

She has been very peaceful...maybe too peaceful. Her skin is so pale and she doesn't wake up very much. When she does open her eyes, she closes them soon after. Her breathing seems shallow, but I am hyper-sensitive...so who knows if it is actually different than normal. At least she isn't vomitting.

Tommorrow is Sunday. We will try to go to church if Hope is able to travel. Of course, this means we will be experiencing our first Sunday morning without Ashley. Sunday Mass was the one thing we always did together. The girls always came with us, unless they were very sick, or at respite. Anyway, it just hit me that I only have to get three kids ready for church tommorrow.

Instability

2011-03-25T15:53:00.000-07:00

The funeral was beautiful and the support was overwhelming. We both want to thank everyone for blessing us with meals, words of support, visits, hugs and attendance at Ashley's funeral. We were glad that we chose some of Ashley's respite providers to be her pall bearers. It was very fitting.

Presently, we are finding ourselves focused on Hope. She is just not getting better. The day of the funeral, she didn't throw up because we decreased her feeding rate in half (we were worried that sitting up might be too much for her, so minimal amounts in her stomach would be better). But during the funeral, her breathing was very laboured and irregular. Yesterday, she perked up and we had some lovely smiles and wonderful cuddles.

Today, we woke up to find that Hope had a very high fever. The tylenol brought it down, but her breathing has been laboured and irregular at times. For a few hours today, her lips were very pale and the veins around her mouth were very blue...just like Ashley before she died. But now her lips are pink and she's breathing a bit better.

Dr. Harlos, from the Pediatric Palliative Care Team came by and listened to Hope's chest. He made me feel better when he found that Hope's chest didn't sound as bad as Ashley's did, last week. Hope is still having wet diapers too. So, I'm hoping that we have a couple more weeks with her.

If you were to ask me how we are doing, I would be hesitant to say because we are still in a rather intense state of watching and waiting. I doubt that we've processed anything at all, and it's hard to believe that Ashley is gone. I just hope that we have a few more months with Hopey.

Ashley's Funeral

2011-03-19T20:33:00.000-07:00

Ashley's funeral will be held on Wednesday, March 23rd at 11:00am. It will take place at St. Timothy's RC Parish on 135 John Forsyth Rd., with a reception to follow. In lieu of flowers, please go to the website for The Childrens Rehabilitation Foundation to donate, which is the fundraising arm for RCC. See below...

http://www.rccf.ca/

Alex and I would like to thank everyone for the overwhelming support and genuine empathy that has come our way. We hope that Ashley has touched your lives too.

Our Angel is in Heaven

2011-03-19T06:20:00.000-07:00

Ashley died peacefully, at home, in our arms yesterday at 2:30pm. Grandma and Grandpa Allen had just arrived as she took her last breath. It was a blessing to have them present at the moment, and after when they were able to help with Mira.

Having Ashley at home while she was dying, gave us a chance to feel our emotions and listen to our instincts. Yesterday morning I felt the need to give Ashley a sponge bath, even though she didn't really need it. As I washed her body and rubbed her little hands with lotion, I had the thought that this could be the last time I would bath her. She was still breathing fast, and nothing really changed but as I finished her bath, I felt a moment of 'panic'. That's not really the right word, but it's close. I just knew that I should call Alex home from work, and even if she was fine, he could still come home to support me. Alex arrived home around noon, and was able to have a couple hours cuddling Ashley on the couch. I gave him some time with her, and had a little rest. I awoke after 30 minutes and felt refreshed (which I was surprised at), so I got up and went to Ashley. I had just a little more time with her. Alex opened the door to his parents, who had arrived, and then we sat down with Ashley and she took her last breath. It was so incredibly beautiful. She was quiet and peaceful, and breathing nice and even...and then she wasn't. She just lay there, and you could almost feel her beautiful spirit drift up to heaven.

Mom & Dad Allen were able to go pick Brodie up from school. We had some time with Brodie, and he is handling things as an 8 year old would. He experiences some emotion and then takes a break to play wii, then comes back again. He's doing well. It will be an adjustment for all of us. When it was time for Ashley's body to go to the funeral home, we asked Brodie if he wanted to say good-bye again. I liked what he said..."Why Mom, she's already gone." Yep, he was right. She's already in heaven.

Today we will start planning the funeral. Information will be posted here of course.

Working hard

2011-03-18T08:28:00.000-07:00

Ashley is still working hard to breath. She's breathing very fast, and still has a fever. The tylenol helps sometimes. I just keep giving it. She does look peaceful, and she's not having any seizures. We rarely see her awake. If her eyes are open, they are often just half open and not very aware. She is not having any pain, as far as I can see.

I have been so focused on Ashley, that I forgot to notice that Hope isn't getting better. She started her vomitting episode 10 days ago, and she still isn't back to normal. Usually she gets over it in 4-5 days, and then has a 'perky', energetic time afterward. But I can't sit her up, or she will cough until she throws up. So, I am keeping her on the couch too. This morning I cleaned up a whole bunch of thick, green secretions from her mouth and the cloth under her face. She's terribly sleepy and I was expecting that she would be back to smiling by now. So, I guess she's sick too.

We've definitely entered our 'Winter' season in this house. It's a time of change, and it's although it is a little gloomy and grey, we are still blessed. We are at home...together! Blessed by friends and family who call, or send notes, or comment here on the blog. Blessed by meals, and coffee treats and special visitors. Most importantly, we are blessed by God's presence and the peace that envelopes our home. We still smile and laugh and eat and pray! We are well....thank you for caring.

January/2011

Death watch

2011-03-17T07:21:00.000-07:00

When Ashley was a year old, we decided to stop waiting for her to die, and I remember a comment about us being on the 'death watch'. It feels like we're back there again. Unfortunately, it is not something I can control, and although it may sound like we 'cry wolf' a couple times... and then Ashley gets better, we are not over-reacting. We're just living a very real, very tough situation. My friend, Karen, sums this up very well in her recent post about 'life bumps'. You can see the link to her blog on the sidebar titled Rainbows and Earthquakes.

Ashley is breathing at rates of 70 - 80 breaths/minute right now. She has a fever that comes and goes (sometimes the tylenol helps but it doesn't seem to be helping this morning). She did have a wet diaper this morning and she's not puking, although she's barely awake enough to even cough, much less vomitt. She still looks peaceful, and she could get over this, but I really couldn't say for sure.

Limp

2011-03-16T08:08:00.000-07:00

Don't you love my blog titles? I am just not very creative right now. Limp is the title because Ashley and Hope are just limp. What a wierd word.

Ashley had a wet diaper this morning. She does this to keep me on my toes, I'm sure. "See Mommy, I won't pee for 2 days just to make you wonder, and then I'll flood everywhere". She's just lying here this morning, with limp arms and a slack mouth, drooling icky green stuff and her eyes are half open. It's not the most encouraging picture...but she did pee...so that's something, I guess.

Hope sat up in her chair for a couple minutes yesterday and promptly started coughing and throwing up, so back to the couch she went.

Brodie's done hockey for the season, so we don't have that fun distraction. Mira has two teeth and is chewing on everything in sight. She tries to get anything and everything into her mouth. So cute.

Hmmm

2011-03-15T18:08:00.000-07:00

Hmmm, I don't think Ashley is quite better. She has had some breathing issues today and is not looking very good. She also, hasn't had a wet diaper in 36 hours.

Hope puked a couple times today, but only because she's coughing so hard.

It's stay home, cancel appointments and manage necessities only for now.

Better?

2011-03-14T20:21:00.000-07:00

It was a better day today. I think both girls are on the mend. We had a peaceful evening at least. Ashley tolerated her meds and water today.

More of the same

2011-03-13T12:47:00.000-07:00

Ashley just can't seem to stop her stomach from heaving. We can't put anything in her stomach at all. She's been dry heaving all day. Hope is coughing up green/yellow stuff, but seems okay other than that. We're a little tired. Alex and I both have headaches...lovely!

Brodie and Mira are bright spots of course. Mira is trying to sit up...

Ashley's sick now!!!

2011-03-12T19:50:00.000-08:00

Unbelievable! Ashley started vomitting tonight!!! Her stomach is heaving so much that her puke has become blood tinged, just like Hope. Seriousely???

I don't get it.

Hope did have a wet diaper today, so I guess she's on the mend. Not that it matters, we just move the suction machine over to Ashley's couch and keep on going. Honestly, I'm a little tired of it all.

Coughing

2011-03-12T09:30:00.000-08:00

This is just a little update, for those who are wondering. Hope finished vomitting and started tolerating bits of water yesterday. Today we've increased her water and she is tolerating all her meds. She's started coughing up some green yucky stuff and she has not had a wet diaper since Wed. I'll be expecting a wet one tonight or I'll be worried.

She looks good though. Nice pink cheeks and a fairly strong, productive cough.

Brodie had his last hockey game today. Mira is having a nice nap and Ashley is enjoying the couch. It's a good day to relax.

Hope is sick

2011-03-10T17:49:00.000-08:00

I took the girls to RCC yesterday for Ashley's wheelchair fitting, stander fitting, and an appointment to have her casted for the soft boston brace (a brace that will support her torso which is becoming very twisted). I snapped this pic just before the vomitting began. I was so pleased to have gotten to the Centre by 9am and the girls were all smiley and cute...so I got the camera out. A little while later, our nice day turned sour when Hopey started vomitting yucky, blood-tinged puke everywhere.

If it had to happen at an appointment, I'm glad it was an appointment at RCC because they were great. Pukey clothes and blankets were washed and dried (yep, they have a wash machine and dryer), and they had some sheets to wrap Hope in while the clothes were in the wash. In the meantime, we continued with Ashley's appointments. You can see her below, getting covered in plaster to make the mold for her brace...

All that stuff came off eventually and although I washed her fairly well before I dressed her, she still needed a bath when we got home. I was a little worried about driving home with no one to sit with Hope. If she started vomitting while in the carseat, I was pretty sure she would aspirate (which would mean getting stuff in the lungs). She didn't puke. She waited until we got home and then started up again.

So, there we are. It's just one crisis after another these days. I'm glad we enjoyed the previous week of smiles, cuddles and peace to the fullest. Today Alex got home from another work trip, so I'm glad to have him home tonight so I don't have to sit with Hope alone.

Normal?

2011-03-05T16:05:00.000-08:00

I guess we're back to normal, almost. Ashley is still sleeping a lot and I haven't witnessed any seizures, but I like this new normal. Ashley started moaning, loudly, today for the first time. So I picked her up and she promptly stopped moaning, and started smiling! Well, isn't that nice. She's using her moaning for a good reason, I like that. She had a very good day. We're still going slowly with the feedings but we're getting back to regular feedings soon I hope.

Hope, Mira and Brodie are doing well. We were excited to have a 'bumbo chair' lent to us for Mira, which allows her to sit up and watch Brodie or myself while I'm working with the girls. It's great.

Back to school

2011-03-01T14:01:00.000-08:00

I finally found a moment to update the blog. We got adventurous and took the girls out to one of Brodie's hockey games on the weekend. As you can see below, my two wonderful respite workers, were able to help me. It was fun and the girls did great.

Ashley went back to school yesterday, and did fairly well. She's still not having any noteworthy seizures, but she is getting a little more stiffness in her limbs. We have to use some pressure to bend her arms and legs, not quite as bad as before. Unfortunately, she is still having trouble with some vomitting. We think she starts coughing and that brings on the puke, so we're using Hope's pump to deliver formula very slowly, attempting to minimize the amount in her stomach at any time. Yesterday, we ran the pump too fast and she was puking again, which isn't fun because she turns a little blue and really struggles to breath. So, I'll adjust the rate again. She gets home from school in a few minutes and we'll start the pump at a slower rate. I'm not sending any food to school, as it would be best if she's not throwing up at school!

Brodie, Hope and Mira are doing very well. Mira loves bouncing in her exersaucer and really loves her jolly jumper!

Much better!

2011-02-25T16:31:00.000-08:00

Ashley is definitely better! Are you surprised? Because I sure am. This is certainly a wake up call for us. It's time to get some funeral planning done. When Ashley was six months old we started planning her funeral, and then she stabilized around 12 months old. We haven't reviewed those plans since. The Palliative Care team told us that they see this happen. This little crisis could be called a 'dip' and she might have many more, or she might succomb during the next one, but it isn't unusual for a child to deteriorate and look gravely ill, and then bounce back. We'll call it a 'practice run' because now that we know what it looks like, we can make a few preparations. Not that it will be easy to support her through some more 'dips', but it helps to have an idea of what to expect.

The support we recieved through phone calls, visitors, comments and emails, was incredibly appreciated. We didn't feel alone, and yet we had many peaceful moments with Ashley in between visitors/phone calls. It was a good balance.

Ashley is a different girl now. Since her illness, she is completely relaxed and peaceful. She doesn't moan or cry. She never postures or twists her body. She has had no seizures! She just lays there with her eyes moving around when she hears a noise, and sometimes she has a tiny little smile. We have NEVER seen Ashley like this...hope it continues...

Ashley at 6 months old.

A bath!

2011-02-22T06:37:00.000-08:00

Well, we're getting optimistic and giving Ashley a bath this morning. She coughs and sputters with each turn and turns a little blue around the mouth, but then settles and returns to regular breathing. Alex went to work today, we figured he might as well. Ashley seems to be getting better.

We'll try some formula again today. She's been tolerating water through her G-tube, throughout this time, but each time I have tried formula, she has started vomitting. So, we'll dilute the formula and borrow Hopey's feeding pump for Ashley, and let the formula drip in slowly.

So, I do not think I will post again tommorrow, unless something happens. I'll put another update on here in a couple days. Thank you sooooo much for the prayers, the thoughts and the helpful, supportive comments. Even when someone writes that they are thinking of us, it is meaningful. Thank you.

Another day

2011-02-21T06:57:00.000-08:00

Well, I think this is going to go on for weeks. Please don't forget about us, this is really hard. I remember when Ashley was an infant, even before we knew anything was wrong, and I constantly told myself that this child was teaching me patience. She was so difficult to feed and I had to relax myself and wait till she was ready to lean in and latch on. Well, the lesson in patience is ongoing. Apparently, this is not something that I am very quick to learn.

We are in limbo! Is she getting better? Is she dying? I have many moments of peace when I relax and realize that I can be thankful for the 'right now' of holding her and being at home during this uncertainty. Wouldn't it be awful to be in the hospital? I'm sure the many prayers for us, are helping us find these peaceful moments and just accept what 'is'!

We hadn't seen a wet diaper in days, and then she filled a diaper to overflowing last night. Her breathing is regular and a good rate. But her cough is not that strong and she's not moving anything when she does cough. Her chest still sounds horrible, especially the right side. And oddly, she is still very sleepy, completely limp and has had no seizures and no posturing. This is NOT NORMAL for Ashley. It's lovely to see her so peaceful though.

So, there it is. I have no idea what is going on, and I just need to accept that! I'm going for a walk, I need to get outside for a bit.

Awake

2011-02-20T06:51:00.000-08:00

During the last four days, Ashley has been limp and lethargic, mostly sleeping and if her eyes opened it was a half lidded, glassy eyed look. This morning her eyes are open and she seems awake, just like she would normally look, except she's still limp, she's not having any seizures and she's not posturing.

Her chest still sounds horrible and she's not coughing anything up, but she looks so good. I told Alex this morning that she's probably going to shock us all and get better.

The same

2011-02-19T19:16:00.000-08:00

Ashley's day has been peaceful, sometimes breathing fast, and sometimes breathing slow, but still peaceful. She opened her eyes once and looked very sad...one tear trickled from her eye and then she went back to sleep. Very sweet but kind of sad. She does not appear to be in any pain or distress at all, in fact I can hardly believe that she won't get better. She appears to comfortable, as if she will wake up tommorrow morning and start moaning to be picked up. I haven't had to give her any comfort meds so far, we've just been blessed to sit with her and hold her.

Breathing fast

2011-02-19T06:10:00.000-08:00

This morning, Ashley is back to breathing fast with the occasional little pause and sounding very congested. She managed to cough up a bit of green stuff last night but not much. Thankfully, she still looks peaceful.

Another day to hold her.