I Can't...I'm in a Wheelchair

So, this blog post has been especially difficult to write because I'm really grieving.  I'm sobbing as I type. Finally, two friends helped me to admit that:

I'm scared about Toby's future, terrified really, and I'm grieving about it.  I'm also upset - upset that he can't walk, or even crawl and may never do either.  It's really hitting me hard... really hard.

Just recently a friend posted on her son's Caring Bridge page how she's struggling with comparison - comparison being the thief of joy. (Please read her July 31st entry - scroll to the end);  I was so thankful for her post because it helped me finally admit to myself, and my Savior that I'm struggling with comparison too - and fear.

Tonight as I was getting Toby dressed after his night-time bowel routine, I put his shorts on and prepped him to leave his room.  I told him,  "Toby, you really are going to need to start doing this (meaning putting his own shorts on) all by yourself."  His reply to me, "I can't, I'm in a wheelchair."

It broke this mommy's heart....

Of course, I told him about all the amazing things that kids can do in their wheelchairs, that yes of course it's harder for him to put his pants and shorts on, but that he's done it before.  He is stronger because of it.  But, honestly I just want to sit down and have a pity party.

I've been playing that comparison game again and it is robbing me of my joy...so and so's child is participating in that cool sport, so and so's child is walking now, so and so's child is etc. etc. etc.  Some days I need to get away from Facebook, and stop reading everyone's updates.  I try to focus on the things that Toby can do, the things we can be thankful for- He's alive, He isn't on his ventilator 24/7, etc.  BUT some times I don't even want to do that. I just want to cry, sob, and throw a little temper tantrum that "THIS ISN'T FAIR!"

Then, the fear creeps in.  Fearful that we aren't letting him get involved in enough sports - being active enough so he'll be active when he's older.  Adults with SB really struggle with weight issues as they get older, especially ones in wheelchairs and then it affects their quality of life.  I really want him to be active and fit so he doesn't struggle with that.  I fear that he is too dependent on us, that I do too much for him.
Another big struggle with adults is time management and independence.  With Toby's recent back surgery he really hasn't been able to do much by himself.  He has contractures now in his hips and knees, so his knees can't extend completely, which means he can't stand.  His braces don't fit him anymore, and his old ones kept his knees locked straight.  It's not safe for his tendons/joints to have them straight, if we could even get them straight in the braces because of the contractures.  The rods are also prohibiting any type of intensive physical therapy.  Every time we leave PT, I feel more discouraged because she tells me more exercises and movement he should/should not do.  She's been communicating with his orthopedic surgeon.  Most recently it was no twisting of his spine, so hitting baseballs.  Yesterday, in desperation, I asked her if we can work on crawling (army crawling) so he can be more independent.  We are still transferring him in and out of bed, in and off the commode, in and out of his shower chair.  She is worried that it will extend his spine too much, put too much pressure on those rods and go against the doctor's orders.  It crushed me - so all he can do is sit in his wheelchair? That's all!!

Just a few days ago, I told Bruce that I felt like we sort of got the double whammy with Spina Bifida AND the trach.  We love the water,  the beach, water skiing, water parks, the Great Lakes, camping, etc. (well, Bruce doesn't LOVE the beach so much), but it's really hard to take our kids to those places because of Toby.  He has a trach - he can't be immersed in water because it will go directly into his lungs.  It might cause an infection or worse drowning.  Is he still going to be sitting in the zero-entry end of the public pool when he's 10 or 15?

Another friend who has a younger child with Spina Bifida and a trach wrote a blog post recently called "Standing is Stupid".  (Her blog is amazing by the way - she has a gift with words).  It's an amazing perspective and one that I'm struggling to accept - that Toby may never stand or walk or swim or run, and that is is okay.  We will have to focus on the things he can do - and give him as much independence in that chair.

Toby loves to play doctor.  He doctors his JT doll (It's his Medical Mini-me), and one of his nurses always plays as his assistant.  We need to foster that love, and continue to encourage his independence.

One day none of this will matter at all - He will walk, run, and breathe in heaven and God will make him whole.  For now, I will grieve, cry and have my fit and when the sun comes up in the morning I'll set aside my grief and move on because that's what you have to do - keep moving on and accepting that God's grace is sufficient even when Toby's in a wheelchair.