Tuesday, December 27, 2011

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.

Saturday, December 24, 2011

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.

Thursday, December 15, 2011


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.

Friday, December 9, 2011


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...

Thursday, December 8, 2011


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.

Monday, December 5, 2011

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.