Being present!

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

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

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

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...

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...

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

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

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

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

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!

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...

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...

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.

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?

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!

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...

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

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

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"