Friday, October 25, 2013
There has been so much going on in our home that Im not even sure what thing to blog about. But I think Im going to stick to the most recent instead of the obvious thing that people think I will be blogging about. : ) I will definitely be going back to that one though. We've had an interesting year to say the least and the person who has gone through the most has hands down been Toby. Tethered cord surgery is no joke people. Its crazy. Insane. One of the hardest things Ive seen Toby go through. Not to scare all the moms of SB babies out there. But it doesn't get easier. Its hard. Its hard to explain to a child whats going on. Its hard to tell them its worth it. Its hard for them to understand and be consumed with fear and pain and yet for part of them to totally not get it. Shoooo I hardly understood all of it and the whys behind it. Then the derotation osteotomy is no joke either. It was almost harder than the TC surgery. Casts and weeks and weeks and weeks of casts. not being able to crawl. having his legs propped up. INSANITY. No bathing....well that was just gross. Toby didn't care. Anyway, at the end of it all there was one big thing that happened. Toby tasted independence. Which I know seems weird after I said how hard they were. But picture a child who has never been able to do for himself. Never gotten his own water. Never helped set the table. Never gotten food, pushed in his chair, never done lots of things totally by himself. Never been able to carry toys to another room, never been able to pick up a ball and play. IF you are wondering why. Picture doing all those things in arm crutches. When ever drop of your energy and focus goes to walking. Think of where your hands would be and how much balance it would take. Most people don't realize that toby is paralyzed, little to no feeling in his legs at all. Imagine walking like that. Then imagine yourself in a wheelchair. Your hands are free or basically free. You can do things, get things, move things and help. MAJOR difference. He was happier. A lot happier. Yes we had our sad moments. Yes we avoided parks and playplaces. But during the day he was happier. Now imagine taking all that away from a 7 year old. Putting the wheelchair away and handing him those arm crutches again. Saying, no more. no more independence. no more getting things yourself, no more playing easily. everything will now be harder. You will get fussed at, you will get told no, you will get told to work harder. When you mess with the spinal cord everything is affected. He started stuttering, He started struggling more with hand strength. And yet we pushed and pushed and pushed. Therapy 6xs a week. Hes done with school and instead of playing he's doing more work. And yet for weeks I couldn't see it for what it was. I was blinded by "walking" I was blinded by my dream for him. My goal for him. His life just never doesn't have a goal. He was a mess. Emotional, obstinate, acting out, refusing to play, fighting the therapists every chance he got. And yet I couldn't see his life for what it was. Kinda a mess. A mess I helped create. Here I was trying to do whats best for him and making his life miserable in the process. Last night I started thinking what if we lost him. What if he died. It can happen. Its happened to plenty of parents before me and will continue to happy. What if I knew I only had a couple more years with him? I would say, FORGET THERAPY. FORGET WALKING! LOVE LIFE. PLAY. HAVE FUN. I would stop fussing, I would stop saying, "GET UP", "TRY HARDER" I would stop demanding so much from my 7 year old little boy that most adults couldn't handle. Even as I type this I'm embarrassed to admit how blinded I was. But I type it hopefully to help other moms not let it happen to them and their child. Nate and I were at our wits end with him. Honestly I was ready to send his hiney to a boarding school. Anything. I was ready to check into CHINA! But then Nate and I prayed. We stayed up and prayed and begged God for wisdom. Because I honestly HAD ZERO. Even after 7 and a half years of raising a special needs child I was about as lost as the first year with him. God answered so quickly and clearly. He used different people, different circumstances for me to take those blinders off. For me to go, "whoa hold it!! what are we doing here?" And ya know I'm thankful. SO thankful. Now don't get me wrong am I bringing out his wheelchair now and saying no more walking. You don't have to do anything. All I want is for you to be happy nothing hard will ever be asked of you. Ummmmmm NO!!! because that's not healthy either. But Im letting him breathe. I'm letting me breathe. I'm saying, "Hold the show people. Lets give this kid a break. Lets let him be a kid some." You know when we watch him play wheelchair basketball he is talented. Like really talented. Hes fast and you know he's happy. He loves it. I cant imagine living a life where everything I do his hard. Where everyone is telling me to work harder. Where nothing I do feels like enough. Where everyone picks my goals for me and then I do all the work. Praise God its not how our HEAVENLY FATHER works. Praise God He doesn't ask that of us. So who am I to ask that of Toby. We got to find balance. Pray for balance. Pray for us as we figure this out. God has shown Nate and I we need to back off some. We need to change some things. Now how that is going to look in real life and still trying to do what is best for him....you know I'm not 100% sure. But we are still praying. We are still begging for wisdom. And we will continue. Because if anything Ive learned as much as I am an "expert" on Toby and he's condition. I absolutely still need the Lord. I NEED GRACE!