Just keep swimming!

I haven't blogged in a very long time, it seems. I wait until there is something emotionally pressing on me before I finally let it out through my fingers on to the keyboard.

I guess today I want to share a real view of what it is like to have three kids with a progressive neuromuscular disorder. Before I say ANYHING I wan it known that I love my children exactly how they are. They make me proud of their "never surrender" spirit shows through every single day. But it's only fair to them, that I am honest about their disease so that you may have a peek in to what they deal with.

There is the obvious, and the not so obvious. Let me point out the most obvious thing that is not obvious at all. They hurt. They hurt everyday. They don't whine to people they don't know, they don't tell people they hurt. But they hurt. Its so easy (even I do it sometimes) to look at all three of them and assume they are just fine. They look normal. Sure they wear AFO's on their legs...but that's no biggie..right? WRONG. Have you ever had a cast on your leg? How about a walking cast, one that lets you get around, but you cant really move your ankle, and you have to keep your foot straight out. How about trying that on both legs. Every. Single. Day. Wyatt has not gone a day without his feet/legs in this position since he was six years old. And yet...he has climbed a rock wall (out of sheer determination), he has hiked up bluffs in beautiful Minnesota, he runs, he plays, he does as much as he can...all with his legs/feet in this position.

We drive a mini-van. (exciting I know!) Why do we drive a mini-van? (obviously it is not for the "cool" factor). We drive a mini-van because it is darn right HARD for kids with AFO's to get in and out of a vehicle. Alli found this out the hard way when she had to start wearing her leg braces. A mini-van is lower to the ground, has handles to hold on to when you get in, and still has some room to maneuver a body (with two cast like irritants on their legs). Would I love a jeep, an suv, or something cool? Well sure! But right now...I would LOVE to have the doors on my minivan actually work. One door is stuck shut, and the awesome button that we used to be able to push to make the doors automatically open...yeah, that cool feature gave out a couple years ago. GET IT FIXED! Right? That's what your thinking? Well, that leads us right in to the next "not so obvious obvious thing"

Money. We are a single income family. My husband works hard. He works so hard in fact that it sometimes means he works MORE so we can have more money to try to pay for things that people have no idea we have to pay for. Obviously doctor bills, right? Correct. Pediatricians, Pediatric neurologists (remember we times all these things by three because we have three kids with this disease...not just one) Physical therapy, speech therapy, orthotics, special socks, special shoes, special inserts in those special shoes...the list goes on. NEVER ENDING. We spend over $400/mo on prescription medications just for the kids. Wyatt's meds, Alli's asthma and allergy meds, and Eli's urinary meds. Thankfully we will soon meet our deductible and that price will go down. (until next year)  This is not a disease that goes away. These bills just accumulate and accumulate. We just get caught up...and its time for another visit to someone.

Next "not so obvious, obvious thing"...

They want to play sports. They want to be on a team. They want to run without worry of breaking an ankle. They don't want to be the kid who doesn't get to jump in a bouncy house or on a trampoline. They don't want people to stare at the "things" on their legs. They want to be like your kid. But they cant. You don't see it. You don't see it because they look like a normal kid to you. Wyatt's heart breaks that he cant be on a football team. He LOVES the sport and eats, breathes, and sleeps football during the season. It breaks Paul and I's hearts that he cant be out there. As I write this, I realize this is an exceptionally emotional thing for me. He would make one heck of a football player.

I pass out IBU Profin almost every night. Wyatt takes prescription pain medicine twice a day. (Non narcotic...a medicine made just for people with nerve related pain) If he doesn't take this medicine...he doesn't walk. The pain is too overwhelming. He is 11 years old, and he has to take this twice a day, just to live a semi-normal life. Alli deals with less pain, but in a way, her lack of pain is also a concern. Her feet go numb. She looses feeling in her lower extremities at times. This can be very dangerous. If you cant feel your feet...you are at a higher risk for hurting yourself even worse than if you can feel it. Thankfully her numbness and lack of feeling comes and goes...and I pray it never goes away for good.

This brings up another thing you wouldn't know about our family. We have a counter height dining table from a second hand furniture store. I always thought they were cool and really wanted one. Now, after two years of owning one, I now know it was a stupid purchase on my part. When their feet cant reach the floor, their legs go painfully numb. The shooting, sparking, painful numbness that feels like you are walking on nails. This happens regularly at dinnertime. One kid accidentally kicks another kid because the first kid had a nerve spike and didn't feel the kick, and the other kid hurts because the kick felt like it just sent their leg into a bonfire. So, get a new table, right? Right...see "money" above.

I'm at a place right now where I realize this blog is full of complaining. I don't want it to come across that way. Im not asking for anything. I just want the "not so obvious" things to become obvious to our close friends and family. If you see my kid writing with a pen or a pencil and it just up and fly's out of their hand...they didn't throw it, and they don't want you to see what happened. Would you? If we don't invite you over for dinner, it's not because we wouldn't love your company...its because we cant afford to host a dinner party, and quite frankly...my house is a mess. If you invite us to go somewhere with you and we say no, Its probably because either A. we cant afford it due to all those pending medical bills, or B. Its possibly an activity that would be something our kids should avoid.
That doesn't mean we don't want to be invited places. Our true support system lives far far away. The people who "get" this disease because they have it too...our loved ones who share that DNA...they are in Iowa, Michigan, and west Texas. They are all there...without a support system of their own as well. All of us are stuck in a land of hiatus waiting for this disease to get worse. Wondering if when they wake up tomorrow...will something in their body have changed for the worse? We don't know. We never know what tomorrow will bring. Let me just say that one more time...We NEVER know what tomorrow will bring. Obviously, we live by faith and not by sight...or this life would be unbearable.

Alli choose a life verse a couple of years ago. "I can do all things through Christ who gives me strenghth." Philipians 4:13. That speaks volumes of the kind of kid she is. Her most recent passion is climbing trees. Try that with leg braces. ;)

Wyatt has a deep faith in God. We used to call him our little preacher. He doesn't see himself as handicapped at all. He sees the blessings. He is logical to a fault. He sees the GOOD in life. He is super social and genuinely likes other people.

Eli is just beginning this whole CMT thing. He is working through his own social issues that have nothing to do with CMT. He is severely dyslexic and socially challenged at times. He is hoping to make a friend of his very own in the near future. That's his goal right now.

Paul is starting to feel the affects of his faulty extra chromosome as well. Due to the fact that we cant afford for him to loose his job, I wont go in to details of what he is truly silently suffering from. But I can tell you that he would take all the pain, all the hurt from all three kids on to himself if he could. He has said it many times, and I would as well. Because we love them. We love them so much, so deeply. The awesome thing about that...is that if we love them that much...our Father in Heaven loves them even more than we do! And that, my friends...is how we keep going.

The best advice comes from a fish with short term memory loss. "Just keep swimming".