October 3rd - Tough Questions

Tomorrow I will continue with Toby's birth/beginning of life story, but this morning I want to take a moment to share a conversation Toby and I had last night.

Toby and I were hanging out at the park during Garrett's soccer practice.  He and I began to talk about his back surgery today.  For some time, he has had the misconception that every time he has surgery it's going to fix things so he can walk.  For the first time I had the courage to tell him the whole truth and not just a brief answer and move on, "No buddy, you can't have a surgery to help you walk.  You're probably never going to walk."

I wanted to cry buckets of tears at that moment. Ugh! Why is this so difficult?

Toby's response was, "This is dumb, that's ridiculous."  He pounded his chair and then did his "self-talk" thing where he tells himself it's going to be okay. He told me he wants to run and play like other kids - he pointed at the kids on the playground. "I want to play football."

What do you say after that?  How do you make it sound less awful? How do you explain that your situation really stinks, but God has an amazing purpose in all of this?

I've been reading a lot lately about how people with Spina Bifida don't want recognition and accolades for overcoming their disability. They just want to be treated like real people. While I agree in part with what they are saying it doesn't discount the fact that Toby has faced more hardship in the first 7 1/2 years of his life than most people face in a lifetime.  It doesn't change the fact that he is going to have to overcome many obstacles and already has - one of which is just being alive. I don't want to discount his courage and perseverance.

So, how did I respond?

"Buddy, I know it's hard; I'm so sorry you can't walk and will not be able to, but I know that God has a purpose and plan for your life.  There are verses in John 9:1-3 that say:
"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" Jesus answered, "It was neither that this man sinned, nor his parents, but it was so that the works of God might be displayed in him."

Toby interjected, "I know those verses."

I know you do, buddy, they are some of mommy's favorites.  Do you know what being blind is, Toby? It's when someone isn't able to see anything - only darkness. This man was born that way, just like you were born with Spina Bifida.  Jesus told his disciples that this man was born that way so God's works could be shown through him.  God wants to use you to show His glory so His works can be displayed in you.  Every time you choose joy instead of anger because you can't walk, you do that. Every time you are thankful for all you have and are - you do that.  Then, we talked about the many things that he can be thankful for - he can play sled hockey, baseball, use his hands to write, and talk. So many kids don't even have that."

It was one of the toughest conversations I've had. How do you explain to a 7-year old that we live on a sin-cursed earth; one that is riddled with disease, sickness, and death.  God never intended it to be that way, but He loves us and can bring beauty from ashes, joy from mourning.

Right now, Toby's having his 26th surgery (I think - I may have lost count, and what about those times when he was put under for multiple procedures), but it's roughly 26. He rolled into the hospital with a smile on his face and cheers - he is happy to be here. He has good people caring for him, and knows he gets to watch a lot of Disney Jr. I had to remind him to be quiet because people were sleeping. His favorite nurses came by to say hello, and made his day.  Often times dealing with the emotional/spiritual side of a lifelong disability is harder than the physical, but I'm convinced beyond the shadow of a doubt that God is good.  He is faithful - He has carried us through so far, I know he won't stop.

This week Caris asked me what it meant to trust.  My reply was that trust is believing that what someone says or does is true. I know I can trust God because He has proved himself faithful a thousand times over.  I'm so thankful that He can be trusted with my tough questions too.