Welcome to part four of my sporadic series ‘Life With Fulton’, where I detail the ins and outs of caring for a child, or children, with Spinal Muscular Atrophy. Read previous installments HERE, HERE and HERE.
I’m a very social homeschooling mom who lives in a state teeming with homeschooling activities. With Philadelphia only a short drive away, I could easily over-extend myself between all the great classes, co-ops, field trips, playdates and special events in the area. But unfortunately, the older and heavier Fulton gets, and especially since Teddy got his wheelchair we stay home more than ever.
It’s been an upsetting reality. I’ve had to accept that it’s becoming too hard for me to travel with the five kids by myself. Maybe if it’s just to our church, the library, the boardwalk in the off-season, or a nearby mall that is half vacant and always empty. All of those are accessible and provide plenty of room for Fulton and Teddy to drive around.
But if your house is not accessible or I can’t be sure if there’s handicap parking that accommodates my van I start to get nervous. If it’s an unfamiliar building or museum, I need to research entrances and elevators. Even a meet up at a regular playground can be discouraging if we pull up and I’m faced with lots of loose mulch or gravel that the chairs can’t handle.
I can’t be spontaneous. I can’t agree to attend anything without thinking of the work involved. Most of which leaves me exhausted after a day out. I spend my whole morning making sure we get some school in, and organizing the diaper bag with ALL the supplies. Then getting ready to go, especially in the winter, is time-consuming : are the wheelchairs charged? Do I need to take Fulton in his stroller to get him in a house? etc, etc. And even with practice, loading up is at least ten to fifteen minutes because of all the effort it takes to secure two wheelchairs into the van. I stopped running errands with the kids, unless they just wait for me in the car, because I spend more time loading and unloading than I do running into a store.
It’s not for want of people trying to accommodate our needs either. There is never a shortage of friends who are tying to figure out how to help us visit them or get us to participate in an event. However, if you don’t have an accessible home, visiting is just going to be hard. Even if I can set up a ramp, often furniture will crowd a room or the playroom will be in the basement anyway. I don’t want my friends to feel bad. I don’t want to say, no we can’t come it’s too exhausting for me. So I’ve carried Fulton and Teddy up and down steps to follow the kids, carried them into houses where I couldn’t unload my lift, and tried to position them comfortably on sofas when their chairs or strollers can’t make it in the door.
And there they sit, constantly asking me to get them this toy or book or pick up a toy they dropped or that was taken by another young child. Most other three and five-year old little boys don’t want to sit still and play so often they are alone or with another sympathetic mom or their sibling who will help and play with them.
In my own house, I know how dependent they are, but my home and daily routine are set up around that. When we go out for fun and socialization in non-accessible surroundings I am unable to leave their sides and it is exhausting. If they want a book, they can’t get it, if they drop a book, they can’t get it, if they want a drink or snack, they can’t get it, if Teddy needs to go potty, he can’t get there. Everything your healthy three and five-year old can do for themselves, my boys can’t do. (They’ve gotten very good at screaming though.) Their older siblings are a big help, but we didn’t get out of the house just so Addie can babysit while I chat with some moms. My older kids need the socialization even more than I do.
I want my older kids to get out and do things, ANYTHING, but getting anywhere is such a challenge. Last Wednesday we went to a playdate at a dear friends house. All the moms there understand how hard it is for me to get out, and tried to entertain Fulton and Teddy by reading or playing with them at different intervals so I could sit and drink coffee and relax. But it was still hard and I came home and cried to Tony that evening because I don’t know how much longer I can do these outings by myself anymore and that hurts. I don’t know how much longer I can safely carry Fulton across icy sidewalks, up steps, across a house that has a playroom and a living room on opposite sides. I don’t know how much longer I can get their wheelchairs into accessible places and keep tabs on them both, like making sure Teddy doesn’t drive off full speed towards a stairwell while giving Fulton a drink. I hope as they both get older, museums will be easier but houses will only get harder the heavier they become. Even getting the boys onto the beach is a struggle anymore, which for me, is devastating because I love spontaneous trips to the shore. I’m becoming the mom that says no to everything and that makes me so very sad.
Worst of all, these days leave me tired and angry. I often snap at the kids more by the time we get home and I just want to lay down. Dinner? Forget it. And I’m scared that Fulton and Teddy will think I’m resentful towards them because of the care they require. I’m not of course. I love being their mother and having the privilege to raise them, however, it’s a lot of hard work and currently, I suck at joyfully serving. And I feel guilty. Why can’t I take care of all their needs when we’re out and be happy?
I wasn’t sure I even wanted to write this post because I hate whining and complaining simply for the sake of doing so. I always try to look for a way to fix my problem or at least stay positive. I try not to post anything just for a pity party. But right now I’m at a loss. I’m working on it but I haven’t found a solution I’m happy with right now. It’s especially hard because I know things aren’t going to get easier, only more difficult. Sorry I can’t wrap this one up neatly with a bow.
Some other thoughts that you might consider.
If your house is not accessible, it’s not accessible. Don’t feel bad. I don’t want you to move on our account.
But please understand, if I need to carry our boys into your house, I might have to decline invitations to visit. I don’t hate you, it’s just that carrying children with muscle weakness is tiring and often the seating in the average home is not supportive enough to place them on. I will spend half my time propping Fulton and Teddy back up because they will keep toppling over.
No, you can’t just pick up the powerchair, even with a couple of “strong guys.” The weight is all at the center and if you pick it up by the wheels you’ll break something. And it takes FOREVER to get wheelchairs repaired.
Thank you for offering, but I can’t allow you to carry my boys for me. Maybe Teddy if he knows you, however, you could easily injure yourself picking up Fulton if you don’t know the proper way to lift him. In addition, neither boy has a defensive reflex. If you’re holding Teddy and quickly move and he starts to fall off your shoulder, he will keep going to the ground. They can’t catch themselves or raise their hands to protect themselves.
If we can set up a ramp and get the chairs in, understand I may need to move furniture and knick-knacks to get them through a room. If I let them drive, they may scrape up your walls and corners. If you’re not comfortable with this, say so.
Do not be offended if my boys don’t want your help. They are used to me providing for them at home and they don’t understand why strangers keep trying to get them things or play with them. With enough time they will get to know you and trust you.
If you have pets that keep getting in my boys faces, even with friendly licks, I won’t be able to visit unless you’re willing to crate the animal in another room. Understand that my boys can’t get away from animals that are bothering them.
Don’t be upset if I need to leave early because I’m tired or frustrated. I’m working on it. I’m figuring out ways to get help.
Be open to meeting at an accessible location like a wheelchair friendly park or local library.
Be open to coming to my house.