When you’re handed a diagnosis like Spinal Muscular Atrophy, you immediately think of doctors, and routine exams and blood draws and usually wheelchairs. You Google for answers and find all sorts of pictures and information and it kind of blows your mind.
Luckily, I had some great therapists, doctors and social workers who helped me sort through everything. Our schedule quickly changed to accommodate a plethora of appointments, but shortly thereafter I leaned, most unexpectedly, that a chronic disease brings with it tons and tons of specialized equipment. Honestly, I never would have believed you if you tried to tell me how much stuff Fulton would require in the four years since his diagnosis. Maybe it just shows my ignorance and lack of experience around handicap people, but I was totally blindsided.
And first off, I’m thankful for it. One hundred years ago, Fulton would probably already be dead by now. His bout with pneumonia at age two would not have been treated with modern medicine and respiratory treatments at one of the world’s greatest children’s hospitals. He couldn’t have received a swallow study to help us realize he was inhaling thin liquids. He wouldn’t have received an NG tube to help him consume enough fluids or calories without choking, or a BPAP machine to help his lungs. Quite simply, his weak body would have succumb to the infection.
But thankfully, we live in a wonderful time where medical advancements make it possible for kids like him to drive around independently, breathe with assistance at home and on the go, stand up and see the world, and stay nourished. Yes, their life is different from yours or mine, but Fulton doesn’t often think about what he can’t do because he’s so busy doing what he can thanks to technology.
But, because he relies on so many external devices to help him do what we take for granted, our house very quickly became overwhelmed with “stuff.” All very good stuff mind you, just lots and lots of it. I must admit that when we received Teddy’s diagnosis, one of my first thoughts was, “Where will we put two wheelchairs, two standers, two of everything?????”
It started with just the paperwork. I jokingly wondered aloud on Facebook whether or not insurance would help us buy a new filing cabinet.(A friend in a similar situation said I should try.) Then, the good stuff started arriving; the bathchair, an activity chair, a stander and braces for his feet to help him stand. Then we ordered the wheelchair and we had to add a large ramp with a deck to the house. We also kept a folding suitcase style metal ramp in the van to help us when we were out. Then he got sick, and we came back from the hospital with a BPAP, a cough machine, a feeding pump, a suction machine, a nebulizer, a pulseox, an oxygen tank and a separate oxygen concentrator. Each item has its own filters, bags, tubes, masks, sensors, connectors, etc. that is packaged individually.
Eventually Fulton needed new braces for his legs and hands and we had to start manually draining his bladder, which requires a new catheter and pair of gloves every time. Plus, pads to protect the bed and his chair from accidents, which are shipped by the case.The space under Fulton’s bed is a warehouse of medical supplies. When he’s healthy, things can get dusty. When he’s sick, his floor and trashcan are overflowing with discarded wrappers and plastic packaging. Hands down, Fulton generates the most trash of any member of our family.
Soon we needed a medical stroller plus a new stander and bathchair (Teddy uses the old ones now.) Then came the hospital bed which fills the small downstairs bedroom Fulton and Teddy share. Between the two beds, a dresser which holds clothes and medical supplies there is barely enough room for Fulton to drive his chair in and park it for the night. We enclosed the front port of our house and made it into a kitchen and are still in the process of turning the old kitchen into a mudroom. I had hoped to bring our chest freezer in from the barn but instead our mudroom is one wall coat and shoe storage, two walls of doorways and one of medical equipment.
Some people wonder why Fulton and Teddy can’t share equipment. Unfortunately, Fulton’s equipment is set to his size and it would require too much work to switch it back and forth daily. Plus, Fulton requires a much higher level of head and trunk support, so sticking Teddy in Fulton’s equipment would actually limit Teddy’s movements.
Some days I feel like the equipment will squeeze us out of our house. As someone who is constantly trying to eliminate clutter and live simply, I am frequently consternated by the boxes of supplies and subsequent trash that clutter our house. And there are constantly new “therapeutic” products being developed which well-meaning therapists keep trying to sell us. However, even with insurance approval, we can’t acquire every specialized device out there. In addition to the downstairs bedroom and mudroom, my living room is covered with a tumbling mat, my hall closet is filled with a therapy ball, stability thing-y, and scooter, plus, there are cases of formula in the basement. When I tell therapists that we don’t have room for this new medical “wonder”, they act like well, you just move some furniture or empty a closet (like I haven’t done that a million times by now.) Little do they know, I’m packing seven people into a 1,900 square foot home, only one level of which is handicap accessible.
As I look into the future, I not only worry about my sons, but where will all their stuff go? Teddy’s wheelchair is ordered and will hopefully arrive in 90 days. Within the next few years, he will also need a special toilet chair which will not fit in our bathroom. As the boys get heavier, we will need a lift to help us transfer them to their wheelchairs or bathchairs. Teddy will eventually need his own hospital bed.
And just when I start to hyperventilate, I remember that the same awesome God that provided our van can handle the “equipment problem’ even if to me it seems absolutely impossible and insurmountable.
For those of you on the outside looking in, I would offer only this advice. Don’t buy Fulton and Teddy anything. They get a lot of well meaning toys and gifts that they can’t use and that take up a ton of space until the day I don’t feel guilty donating them to Goodwill. Plus bedroom space is at a premium so knick-knacks and keepsakes have no where to go except the recesses of their closet.
If you know a parent in a similar situation, and you want to purchase a gift for their child, I suggest asking for ideas. Most often the family will have specific toys or equipment in mind. And special needs families, create a ‘Wish List’ of ideal gifts if you haven’t already and make it public. Perhaps several of your family members could pool their funds to get a special high end toy instead of four cheap toys that only frustrate your child.
Fulton’s birthday is on Friday. I know the grandparents are anxious to deluge him with gifts so I’ve got some closet space ready. As for Tony and I, we already promised to take Fulton, and the whole family, to a demolition derby in a few weeks. I grateful for the opportunity to celebrate another momentous year without adding to the clutter.
All links are to explain medical terms and devices and do not represent affiliations with specific websites.
We just have the nebulizer and a team of specialists that rivals most hospitals. I think we would have come home with the NG tube and a feeding pump two years ago if Daniel hadn’t passed his swallow study.
Oh man, clutter is my enemy. I would have a hard time dealing with all that stuff, as necessary as it is! I wish Extreme Makeover Home Edition were still on because I would totally nominate you! And I’m gonna say it, as corny as it is…You are such an inspiration and an awesome mom.
You’re too sweet Mary. Really, I don’t need a bigger house (since I don’t want more space to clean), I would just like all 1,900 sqft we do have to be on one open level. But for as old as our home is, we’ve opened it up as much as possible between moving walls and furniture. My husband and I often joke that, short of moving into an airport hanger, there really isn’t a house out there that’s going to easily accommodate our size family plus two wheelchairs.
Naively, I never considered the volume of stuff a handicapped child requires. It’s bad enough around here with three kids without special needs! You should figure out how to send subliminal “cash only” gift requests.
Hope you all have an awesome time at Fulton’s birthday treat. Fortunately Husby’s medication doesn’t take up so much space, but I’m with you on the wonder of science, without which he’d be long dead.
I think when you die, you’ll become the patron saint of mothers with children with special needs.
One more thing, when you come visit me, I don’t have a wheelchair ramp, but I’ll carry them up the stairs if I have too. 🙂
If the boys share a room, can you get a ceiling mounted lift? We use them at work and they are genius. I have no idea if they work for at-home use, though.
You need to apply to go on those Home Makeover shows. They would seriously pick an awesome, funny, family like you!!! Have you ever tried? It could also jump start your acting career…just saying 🙂
Thank you for sharing this. This is one of those things that I don’t think you can know until you see it / live it first hand. But it’s important for all of us to know, I think. I appreciate your willingness to be open.
Oooh boy – I hear your pain! All we have are several boxes of bandages, packs of sterile cloths, boxes of high calorie drinks, ointments, tools and tricks of the trade for wound care, etc. and I am going nuts! Unfortunately when we revamped our house, I though it would be oh so clever to get rid of all the closets to give our tiny house more floor space. Ooops. Hugs and prayers for you all!
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