We unwrapped that box quickly. And sat Noah in it only to find that his bum slid through the potty hole of the shower/toilet chair and that the only thing holding him up was the bucket underneath. For a moment I kind of panicked. I knew he couldn't use it like that. I wracked my brain for an insert that would help take up some of the space in the bottom. Noah just has a really little bum. He's a super tiny guy and and his bone structure and body frame is small. Because of the foam material I knew that many products we had here in the US wouldn't work as they'd dig into the material and ruin it, and other inflatable options that they use for people who have hemorrhoids or women who have recently delivered babies were too big. The abductor in the center made it even more challenging. I was worried that I had just worked so hard for something Noah wouldn't be able to use after all.
I contacted SOS (Specialised Orthotic Services) in the UK who is the manufacturer of the product, to let them know my difficulties. They asked me to send in some pictures of Noah in the chair so they could see the difficulties. Within 24 hours they informed me that they had a technician who was making an insert to correct not only the problem of Noah going through the bottom of the base because his bum was so little, but also to help him from tilting to one side - something I didn't even mention. They just noticed it on their own in pictures. I am not used to this kind of incredible business practices and customer service here in the USA. Here the philosophy feels like you ordered it, sorry it didn't meet your needs or expectations and game over. But SOS from day one with all the products Noah has from them have been exceptional. They are extraordinary how they care, in how they respond, and how they will go above and beyond to help.
I was expecting something you know kind of make-shift - like a DIY project out of pool noodles and inflatable swim devices or something to put in the center. They said it wouldn't look attractive and I didn't care, I am always after functional. I was just so appreciative that they were helping me trouble shoot it being a pinch too big for his bum. I've been so occupied with getting Noah well that I wasn't able to really track it's arrival.
But SOS was so sweet and would send me updates on where it was as they were tracking it for me, and I was relieved when I got word it cleared entry in New York. We were at a doctor's appointment with Noah when it arrived, but thankfully Noah's grandmother was here with his little brother and able to sign for it. I hear the carrier who delivered it was curious about the contents of the big box because it was light as a feather. Inside the box was a black and a really beautiful insert. And I do mean beautiful. It was the most perfect fix you could ever think of. It is the very best shower and toilet chair in that exists anywhere. And it now fits Noah like a glove. I am in awe of how they could do this just from a picture of seeing Noah in it. And I wish I could just hop a plane and give them all the biggest hug in real life.
I wish that every child like Noah had one. It's magnificent and so well made. I have been beyond impressed with every single product that SOS sells. The quality of their products, the durability, the safety features and accessories, and how sensory soft and plush everything is. You can tell that so much thought and craftsmanship went into making these products.
The next thing I have my eye on is the Sleep Pod by SOS. During this illness with Noah it has been really hard to have him in another room away from us, we really need something that we could have in our master bedroom with us to watch him much closer when he's not feeling well or a sleeping option for him in the living room during the day where he can lay down on something other than the floor. Special needs adaptive equipment is expensive no matter who makes it or where it comes from. And the Sleep Pod carries a price tag starting at $1,200. Which mind you likely doesn't include carriage/shipping fees or if customs were to flag it as they "sometimes" do and attach a duties and tax to it. The Sleep Pod carries no insurance code and Noah's Waiver has decided to site SSA Section 6505 and not allow any products to be purchased with waiver funding at the moment. It always feels like the impossible mission to get the things I know would make a difference for Noah's quality of life. His only hope would be a fundraiser and I'm not sure how fast we'd be able to reach a goal like that. It would be a completely out of pocket cost for us - short of me maybe trying to hunt a loving foundation to help me.
I held Noah on the couch sitting upright both him and me last night for the entire night. We have a basic cheap tiny couch. Nothing fancy, no comfortable ottoman. Just a couch with two throw pillows I found at Costco. He couldn't lay down flat on his tummy in his bed. He just kept collecting in oral secretions and waking up in a panic. I haven't held Noah all night long like that since he was a baby. Brought back a flood of memories of those early days when I fought so hard to keep him here. Just as precious as he was years ago, simply longer legs and arms, but his sweet scent forever familiar. Moments like that fuel this fierce fighting drive in me to do whatever it takes to make his life easier, better and comfortable.
He is precious in every way, the sunshine in my day, the joy in my soul, the love of my life.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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