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