Love

Oh boy.  I don't even know where to start.  First off, I have thought a million times today that I will never, ever, ever take for granted having my family together under the same roof again.  Ever.  It sounds so cliche, and I probably sound like the biggest broken record, but my heart is broken.   I miss waking up in the same bed as my husband.  I miss getting woken up by Gabrielle wanting to eat, and I even miss the early morning wake up's by Michael and James.  Do I dare say I miss the chaotic dinner time (thank goodness for wine!) and I really miss the peacefulness of the night once the boys are off to bed.  I miss our life at home with play-dates, friends, activities and all that other fun stuff you do when living a 'normal' life.  I miss being together.

Sleeping peacefully at home post-transplant

I will do anything to ensure that Gabrielle has the best quality life I can give her. A life full of love.  I make sure to kiss her belly, her arms, her face, and her toes so she can feel how wonderful it is to be touched.  I make sure to laugh, sing songs and play games with her so she can experience 'play' and how amazing it is.  I let her brothers give her endless amount of attention so she can experience friendship and sibling love.  I make sure she gets lots of time with her grandparents so she can experience all the wonderful things grandparents offer that parents cannot.  I make sure she has time with her cousins so that she can experience how wonderful and loving her big cousins are, and I let them talk about how excited they are for Gabrielle to do dance and ballet and how one day they'll be in grade 7 while Gabrielle will be in Kindergarten at the same school.  I give her opportunities to cuddle with aunties, uncles and family friends as she watches and listen to the chaos off all the kids playing around her. I make sure that while we were at home, and even at the hospital that she gets sunshine on her face, wind and the amazing ocean air to breath in.

Bath time

While in the hospital, I make sure that she only gets suctioned when absolutely necessary.  I make sure that they don't put the mask right around her face when doing nebulizers because it scares her.  I make sure that when they do x-rays that they don't clamp her arms straight up beside her ears because her range of motion is poor and it hurts her.  When the nurses aren't looking I take her little gloves off her hands at night because I know how much she loves to hold her soother, and I request to take her blood pressure cuff off her arm at night because she can't bend her arm to hold her soother.  I make sure that when they do any procedures that I am there with her and when the nurses or doctors ask if I want to leave because it's hard to watch your child in these situations, I always decline because if Gabrielle needs to endure it then the least I can do is hold her hand and look her in the eyes so she knows I'm with her.  We will always be with her every step of the way.

And I can't ever forget what James said to me after Gabrielle came home post-transplant.  He said: "Mom, I wish I could be Gabrielle."   I had no idea why he would think that or how he was processing things in his own mind but when I asked him why he thought that he said "because I wish I could be as brave as her."  My reply?  "Me too James... me too."

So here I sit in the ICU room wishing that Gabrielle and I could be at home.  After 4 days in the ICU there have been no real major improvements.  The corona virus continues to wreak havoc on Gabrielle's lungs and the doctors are waiting to see if the high flow oxygen support, nebulizers, suctioning and medications will support her enough until her immune system (which is being suppressed due to transplant and to prevent GVHD) can fight this virus.  We have been in contact with Canuck place and have the opportunity to all go stay there together for a 'holiday' from the hospital.  We are really looking forward to some time together as a family.  Regan, myself, James, Michael and Gabrielle.  Together, under the same roof.  Even though we won't be at home, at least we'll be together.

Something I have learned to never take for granted again.

love