Do you try harder when you feel like you've lost everything?
I have been reading the blogs of some moms outside of the Spina Bifida world. Mom's who have children with special needs not completely unlike Jonathan's needs. However they have one HUGE difference... their children were NOT born this way. Each of them suffered some illness or trauma that impacted their little bodies and brains in such a way that they can no longer do things that they were born able to do. Something stands out about these moms (families), something a little different than what I've seen with the moms in my "community". They travel and spend money, lots and lots of money. They are trying EVERYTHING and having some amazing success to show for it. I'm learning about all sorts of new therapies and treatments, devices and equipment... there are things out there that I never knew existed! In fact, I've spent over 10K (in my head) just thinking of the things I want to do/get/try for Jonathan right now. I WANT THAT TOO!!!
I WANT to to try those things, I WANT, WANT, WANT for my child and children like my child! Some days, it makes me crabby and bitter just thinking about it because I have no way to get it. I have never in my life struggled with wanting something I don't have. I'm not into shoes, clothes, cars, fancy things. I'm just not. Before Jonathan I was happy in our little tiny cottage of a house, now I WANT a wheelchair friendly one story. Before, I didn't care about my car, now I WANT a van so we can have more room for equipment and kids. I WANT to try new therapies, to have the best equipment and have the latest technology for my son. And, I can't afford most of it. I'd go broke trying to attain it. So I pout, and I'm frustrated and I'm pretty sure I'm sinning in my attitude and I make myself CRAZY. I'm blessed beyond measure, yet I still WANT. I WANT for myself and others in the same situation. We have it better than SO many, my son's have a lifestyle and a quality of life better than so many but still I WANT.
And I struggle... why is it, in our community we aren't encouraged to think outside of the box and try new things? Why doesn't insurance cover new therapies? Is it because our children were "born this way" so, "it is what it is", and nothing can change it? Is it because we already have a "set treatment plan" for children with Spina Bifida, a go-to-guide? Is it because for us, our children never "broke" so we see no need to "fix" them? Honestly, we feel blessed just to have them. We take what we have been given and roll with it (HA, a wheelchair joke!:) We do the therapy, yes. We go to the Dr's visits, yes. We get the bracing and equipment and supplies and we follow the beaten path of those who have gone before us. There is nothing in our community to "fix" Spina Bifida. Our children either can or they can't, they will or they won't and it's all a wait and see. In some ways the black and white of it all is comforting in others, frustrating beyond words!
Here is my dilemma... just because it's not the USUAL method of treatment, just because our Dr's have never heard of it, just because it may not work... do we not try? Where do you draw the line between trying new things and spending buckets of money, in hopes of a better life for your child, and being a good steward of your money by not being careless. If insurance doesn't cover it, do you raise money... do you ask others to join you on a journey of "what if"? Because... WHAT IF... what if it DOES work, what if it's not all "snake oil" and what if it DOES make your child's life easier and more "normal"? What if we are carving new and better paths for the future generations? Can you really put a price tag on that?
I DON'T KNOW! And that's my dilemma.
(But it does help to vent:) it gives me perspective and reminds me to CLAIM and CLING to God's Word.
<< Ephesians 3:20 >>Glory belongs to God, whose power is at work in us. By this power he can do infinitely more than we can ask or imagine.
GOD'S WORD® Translation (©1995)
My 10K list:
Childrite therapy seat $150 (on order will be used to make the Zac Chair)
Charley Wrap $500 (on order)
ZipZac WheelChair $800 (on order, Kent and his team are custom making Jonathan a bigger version with the Childrite seat)
Magnetic Therapy 200 hours $8000
Oh, that Zac wheelchair is awesome! I know the wanting feeling - it's no fun. We always want what is best for our children, and having to pick and choose is hard.
ReplyDeleteI have been having these exact same thoughts lately. You summed it up perfectly.
ReplyDeleteHere's hoping we can all meet our 10K wish list :)
That is a tough one isn't it? I think we should fight for the things our kids need and I think it is okay to take a chance on something new and different. The cost is hard though, I am well aware of this now that we are trying to save for a hand cycle for Caleb. I'm sure people think it is crazy to spend $2500 on a hand cycle for a kid but I think he deserves the opportunity to have a bike!
ReplyDeleteMy grandson is the same age as Jonathan (they live in your neighborhood). He has a genetic condition causing motor delays. He is still not walking at 26 months...he is very mobile, cruising and eventually he will walk but will still have limitations. He also has a baby sister 8 weeks old! It gets hard transporting him and everything else too. I love that Zac chair! Surely someone could make one! Are yall using ECI? Do you know about the sensory room at the Methodist Church? Go to: http://www.thewoodlandsumc.org/spb/special-needs-learning-lab . It's free and they often lend equipment...also special needs playground there. Wanted to pass the info on to you, though you probably already are aware of it. I loved seeing Jonathan do his army crawl...thanks for posting. I am blown away by how far my amazing grandson has come when It felt so hard his first year. The possibilities never end for these kids.I'll Never stop looking for anything that might help! I like to come back and see all the great progress Jonathan is making! Go after your list! And congratulations... little brother! Thank you, May
ReplyDeleteI called it sensory room but the official name is The Learning Lab.
ReplyDeleteKimberly, have you seen Kingsley's Bumbo chair? It's not the same, but it's similar. The guys at the workshop at our children's centre made it for him. I brought in the bumbo and they only charged me for the parts to create it - which was about $75! Apparently it was pretty easy to make. If you can find someone, just have them make it for you! I can send you more pictures if you want to see how it was created. It's a bit wider than Zach's, but it spins on a dime and once he figures out how to use it, he'll be off! :) http://thelittlekingsley.blogspot.com/2011/04/buckets-of-excitement.html I know what you mean about the wanting. There's so much I want, so much I want to try with him. I don't ever want to look back and wonder if I could've done something differently. Motherhood is rough!
ReplyDeleteGREAT blog. I think we all tow the line and we do the best we can. I think in our hearts we will find what to push for and whats okay to leave alone. Hugs!!!
ReplyDeleteOh man do I hear you sister!!! I am in a BAD attitude for this very reason right now!
ReplyDeleteIssue #1 My little SB guy has an infection that keeps coming back, and the Dr's are treating it "the standard way" I am SICK of the standard way because it is not healing!!! So I am spending a fortune out of pocket because no specialty Drs in the county we live in will take his state insurance!
Issue #2 He is in his wheel chair so much right now that my back is KILLING me form all of the transfers and lifting his chair in and out of my car. But I can't afford to replace my car right now :(
And I would LOVE to have him in a special learning program too, but I know I can't spend the $$$....
The list goes on... I hear you so loud and clear!
On a side note, I did and do use magenet therapy (on a much smaller scale) with Nathaniel and have seen tremendous results from it, if you very want to hear about our story let me know :) SimplySoares.blogspot.com or SimplySoares@att.net
You are such a sweet mommy! It was so cute seeing you swinging with your little one. I would have come over to say hey but I didn't want to ruin the moment =)
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