Wednesday, 21 September 2011

It's one of those days...

...Where I'm feeling a little sad about everything.. I am not one to usually feel sorry for myself or to play games with myself and wonder "what would life be like if Gage didn't have Spina Bifida?", but today I read that OHIP is covering surgery for Canadian mom's to travel to the US to have surgery to repair the child's spine in utero. Furthermore, they anticipate the surgery to be available in Canada as early as next year... We missed the boat by a couple of months. Now this is not to say that I would have jumped on a plane, alone and pregnant and travelled to the United States to have an invasive surgery to repair Gage's spine. To sit in a hospital bed for the remainder of my pregnancy, all alone, and risk delivering a child at 28 weeks gestation.

.....But I didn't get the choice.

I know sometimes I wish I could undo Gage's SB, but then he wouldn't be My Gage and I can't imagine him any different. I just wish I would have gotten to make that decision. I see the children that did have the in utero surgery, who are walking independently, living without shunts or chiari symptoms and then I look at Gage, who will likely always need assistance to walk, who has already had 2 shunt revisions, and a sympomatic Chiari and it makes me feel a little sad.
I wish I would have gotten the choice to choose a life that might have been a little bit easier for him.

As if I wasn't having a crappy enough day, I got a phone call from the day care co-ordinator at the YMCA and no one who runs a home daycare (that has an opening) will take Gage due to SB. They are obviously all uneducated and seem to think that my son is going to be a hinderance to their lives or other children in the home. It is so frusterating because Gage needs the same care that all the other kiddos do. and the main child care center has a huge waiting list. My EI runs out in 3 weeks, so now we have money worries too :( ugh...
I am beginning to see the challenges that come with his diagnosis. And I am having my first moments of frustration..

On a little better note, Gage is working his little butt off in physio and making me proud. It's these days that help me out of my slump and remind me why I am so damn lucky to have him in my life.
It appears as though Gage is functioning around an L2 level (his actual level is L5-S3), so he does have to work really hard but he is trying. We are working on tummy time and getting him to lift his head up off the ground.
When I see him making progress, and determined to get that darn head up, I can't help but smile. In those moments, I'm thankful for his spina bifida, because I have learned to appreciate the smallest things and the little milestones that are so important for Gage and his development. These things likely would have gone unnoticed if he didn't have spina bifida.
Here is my dude working hard :)

this monkey seriously owns my heart <3


  1. I remember having "one of those days" many times when Caleb was younger. It seemed that everything was so hard for him, from holding his head up, to rolling over, scooting, everything. Caleb is 6 now and I still have those days when I hate how hard he has to work. But Caleb is amazing and doing so many things that I never dreamed he would be able to do. Gage is so adorable. I can't wait to see all the awesome things he is going to do over the years.

  2. Aww Shayna,
    Big hugs! I have thought the same thing about the MOMS trial - maybe I should have fought harder to see if I was eligible, but I would have disqualified anyways (previous c-section). I almost think it's easier that way, to think 'hey it wasn't an option for me at all'. But remember prenatal surgery has serious complications as well and I think Gage is doing great!
    The levels - I think you just read my mind! I posted all about the levels this week, but Gage is way to young to properly assess, (Nick is too young too), but it's hard when all you want is answers!!
    I hope you get an answer to your childcare worries soon. I was really, really lucky with our private daycare and she took Nick no problem (but she had already fallen in love with Katheryn). Is there a way to educate daycare people? I just don't know.
    You have a fantastic attitude and those down days will usually be followed by an up day. But we all have them. You are doing great!