As most of you know I have been fighting Molina Healthcare to get Jackson a bed that will accommodate his special needs. The bed I was looking at was called a SleepSafe bed. Molina first denied it saying that we didn’t prove it was a safer option than a hospital bed. So I had all Jackson’s doctors and some therapists write letters detailing why the SleepSafe bed was the best option (no gaps between the mattress and sides where he could get trapped and suffocate, 4 solid sides that would contain him when/if he had a seizure, twin sized so it would give him appropriate room to grow, etc.). The documentation and evidence I sent to Molina to appeal their decision was overwhelming in that Jackson needed a specialized bed. Molina then denied the appeal, despite the letters and supporting documentation, saying essentially “Whoops! What we meant to say was we don’t buy beds.” Now if they had just said that in the first place I would have been like “Okay, what do we do now, how do we get Jackson a bed?” But they didn’t, and instead they just pissed me off. [Quick lesson: Don’t piss off mothers of special needs kids unless you are prepared for the wrath of a Category 5 Hurricane and the preparation, storm and aftermath that accompany it]. So this week I called the Office of Administrative Hearings and requested a hearing in opposition to the denial. I have an attorney over in Seattle at the Justice Project who has agreed to take Jackson’s case. It’s not so much about getting the bed anymore as it is the way we have been treated. Jackson has a medical condition (Epilepsy) that requires certain accommodations. It’s ridiculous that we have to fight so hard to get a little boy a bed that he would be safe in. Even if we lose I will feel like we have won. Jackson’s voice will be heard by a Judge and we will send them a message that it is not okay to put families through this just because our kids have different, special needs. It’s not okay to make the people who need help the most grovel, beg and plead for the things they medically need. But meanwhile…..
A friend of mine found a friend of her Dad’s to make Jackson a bed. This truly special man’s name is Dwight. Last week Dwight delivered Jackson’s new bed to us and boy oh boy is it beautiful! It has all the safety components of the SleepSafe bed but it is just so much more special because it was made especially for Jackson. Every time I put Jackson in his bed I feel so thankful that Dwight was willing and able to make the bed for us. No longer do I wake up in the middle of night and hear Jackson fussing because his leg or arm is stuck in the crib slats. I know he is safe and comfortable. It is so cute when I go in to get him and he has his little face smooshed against the plexiglass with a big smile on his face. Plus his bed is just so cool. I got in it myself one night and had Kevin shut the door and it was like being in a really cool fort (I kind of want one of my own now). I’ll never be able to thank Dwight enough for making Jackson’s bed, I just hope he realizes how much his act of kindness means to my family.
Dwight making the bed is just another example of how much Jackson has brought into our lives and how he touches others. He has shown us that there are strangers out in the world who will take their time, effort and energy to do kind things for others with seemingly no reward. Without Jackson I would have never met Dwight or even known about him. Now I am thankful for him every time I walk into Jackson’s room. And once again I am thankful for Jackson and his effortless ability to teach me lessons I didn’t even know I needed to learn.