Welcome to the first post in a sporadic series about life with Spinal Muscular Atrophy, Mantoan style. I hope to give my readers a glimpse into our “normal.” My goal is not to invoke pity about our situation or platitudes about our extraordinary abilities, but to reveal that God does indeed qualify the called rather than the other way around. A serious medical diagnosis may radically change your life, but it doesn’t mean you have to stop living.
Traveling with a large family requires a certain amount of Type A tendencies, otherwise, you’re assured of forgetting a million important items. It’s why “Outer Banks 2013” has been carefully in the works for months. (And I still manged to forget to map directions to the rental office to pick up our keys. Thankfully, the office was located on the main drag and we found it with minimal bickering between my husband and I.) And yet, Fulton takes vacation planning to the next level.
First, I whip out Fulton’s two page packing list, because I don’t know of any neighborhood 7-11 that I could walk into and ask “What aisle do you keep the 10 french pediatric catheters and surgical lube? ” I simply cannot forget anything.
Every night he’s hooked up to a minimum of two machines (three if you count the humidifier that hooks into his bi-pap.) If he’s got a cold, or we traveling for longer than a weekend, that means three more machines to haul. All the machines need to be plugged in at some point either to run or recharge. Right there, logistics rule out any spontaneous weekend camping trips. And as you can imagine, setting up a mini hospital suite for only one or two nights is a pain. Fulton’s sleeping needs were one of the main reasons we decided to rent a house for a week as opposed to spending a night or two on Assateague Island and a few nights in the Outer Banks. Tony and I love camping (a.k.a. cheap overnight accommodations for large families) but we’ve come to realize future trips will have to be budgeted to allow for home rentals.
We take a small trailer with us when we go away for more than a couple of nights. Our van can’t fit all the luggage and medical equipment otherwise. At least, not without making it impossible to load/unload Fulton’s wheelchair. Long drives are difficult simply because there’s often no place to lay Fulton down to stretch him out or change his diaper. He’s far to long for restroom changing tables and who trusts the floor in those places?? We’ve started taking his mat to lay out on the ground at rest stops. As long as the weather is good and it’s not completely paved, this works well.
In trying to stay on a budget (a.k.a. spend as little as possible) we rented the cheapest house I could find within walking distance to the beach. Most homes with elevators were astronomically priced and the few non-elevated homes were either too small or also too expensive. That meant all week we carried Fulton and his medical stroller up and down the steps to our rental. We didn’t realize until we’d drove around that quite a few homes in the OBX are built with long ramps leading up to the front entrance. Something to remember for next time.
Luckily, we can still carry Fulton around, although I don’t like doing it. Fulton is 35 pounds of dead weight. (For lack of a cheerier term.) He has limited head and neck control. One false step and I don’t even want to think about the consequences. I no longer allow anyone except Tony and I on very rare occasions to carry Fulton upstairs in our house and never down our basement steps anymore. I know the older and heavier he gets the less options we’ll have. Yet, I hate to deny Fulton the opportunity to do anything his siblings do or prevent his siblings from doing activities just to ‘be fair.’
We’ve also learned that handicap accessible does not always equal power wheelchair accessible. Something as insignificant as a three-inch lip to a curb or doorway can cause all sorts of problems. Poorly marked or hidden handicap entrances, cracked or buckled sidewalks riddled with tree roots, people illegally parking in front of entrance ramps: until you see the world through the eyes of someone like Fulton you don’t realize how inaccessible places really are. We tried to avoid these problems by taking Fulton in his stroller when we were uncertain of accessibility as it’s easier to lift over curbs and bumps.
One of the things I anticipated the least in adjusting to life with SMA was dealing with other people. This is where I still struggle immensely. Sometimes the attention is polite and friendly and we may even receive special treatment, like a discount at one attraction “because of our son.” Obviously, we get lots of stares. I don’t even mind that. I mean, before Fulton, I’d stare if I saw a toddler in powerchair. Kids usually think Fulton’s chair is cool and want to touch it or ask questions about why he needs it. Again, I understand that. But what rubs me the wrong way, and I feel bad about it, is just the fact that everyone wants to talk to Fulton and touch him; his hair, give him a high-five, shake his hand. Just because he’s in a wheelchair doesn’t mean he’s extra friendly, in fact, unless you’re a young blond nurse, he’s not going to want anything to do with you. Sorry. And it doesn’t mean he’s mentally disabled so please don’t speak to him like he is or ask me questions about his life span while he’s right. next. to. you. In most of these instances, Fulton can’t really remove himself from the individual (like hide behind my skirt or run away) because the person stands directly in front of him. If he can drive away he usually does and when allowed to talk to people on his own without his personal space being invaded he often does.
I know people just want to be kind but I have three older children who would love to chat with you, can I direct you towards them? I don’t want to force Fulton to have to talk to all these people or let them rub his hair. I’m hoping in time he’ll develop the patience and sense of humor to deal with it. For now, everyone just thinks Teddy’s a very well-behaved two-year old in a stroller. But once we’re out an about with two kids in wheelchairs plus the rest of us….good grief.
Vacations are also hard because we fall out of our routine. On one hand, it’s easier because Tony is around all day to help with Fulton and Teddy’s care but on the other, sleeping in, day trips, missing naps: all these things throw off my groove and I’m more likely to forget to administer someone their meds at the right time, or make sure Fulton’s adequately hydrated. For this trip, we really tried to allow plenty of downtime to make sure all of Fulton’s care stayed on track. I really can’t see us vacationing with other people (outside grandparents) because we can’t go,go,go all day. Probably the only good thing about coming home is slipping back into a comfortable routine.
Despite the extra work, I love family vacations and spending time together. (I hope this post doesn’t make it sound otherwise.) We’re planning another trip to the midwest this summer to visit family and already I’m dreaming about a few nights in Ocean City. Every time I start to wonder, how will we mange this or overcome some new struggle, I try to remind myself of all the things we’re doing now that I couldn’t imagine a couple of years ago. And having fun doing too! So long as we have the will, God always helps us find the way.
But Kelly, Fulton’s hair just screams “Touch me!!!” I have to tell you, there is just something about Fulton that just pulls me in, maybe it’s that mischievous smile of his. Oh, and I will now stop being a baby when it comes to packing up my kids for any sort of trip. Thank you for helping me get over myself. 🙂
Wow! That is such an eye opener! So many things to remember and prepare for when you have an SMA child. I love that all the extra work doesn’t stop you from vacationing with your family and making Fulton feel a part of everything!
THank you for sharing!
“I really can’t see us vacationing with other people (outside grandparents) because we can’t go,go,go all day.”
Just because you go on vacation with other people doesn’t mean you have to do everything together all day. You set some “boundaries”, and each family can enjoy the day as it sees fit. Going to the Shore is cost prohibitive, but if the cost of a rental could be split two or even three ways (assuming a large enough rental), we could actually do a beach vacation with the added benefit of spending quality time and building memories with friends while also respecting that each family needs to be able to come and go as it sees fit for daily activities. And who’s not up for a nice game of cards or deep conversation with cigar and scotch/jaeger/etc. together with all the adults lounging on the patio/deck in the evening after all the kids go to bed?
Well I wish I lived near you but then again probably better not because I’d probably EAT Fulton AND the rest of your children!! They are all so gorgeous! I’m delighted you had a good holiday & definitely the cure for post holiday blues is planning the next one!
Very interesting post, I think I’ll try to whine less about taking my daughter to visit her grandmother overnight… 😉
I wonder if it would be easier to carry Fulton in a sling or carrier of some kind?
Thanks for the glimpse into handling special situations. I hadn’t given it much consideration and I’m glad to learn. I’m glad too it was such a great trip!
Thanks so much for writing this!! I don’t have anyone in my family who needs to use a wheelchair or requires extra medical care, but I have some friends who do. And so many people just don’t understand how not to be rude! And what you said about inaccessibility is sooo true. I never realized how true until I met these friends of mine and would try to get around with them and would realize how limited the world was for them sometimes. It’s not fair! Hopefully, by the time Fulton and Teddy grow up the world will be a lot more accessible and considerate of those needing a wheelchair to get around!
Thank you for a glimpse into your life.
In general, when confronted with an unfamiliar situation, In my experience, people fall into a few different categories. There’s the top 1% who blow you away with their kindness, generosity, and compassion; the next 10% who are great; another 60% or so who bumble around a bit but are pretty well meaning; 20% who are going to irritatate the heck out of you, 8% who you WANT to slap, but you shouldn’t; and the bottom 1% (and I’ve only done this once) where you put your arm around them, lean in close, and quietly say into their ear “just shut the ____ up.”
I hope that added up to 100%.
I feel kind of stalker-ish, but I love you!! What an amazing gift you provide us with every post. I laugh one day and the next I get a glimpse of the cross you bear! I love the joy that I get from reading your posts!!
It’s hard for my family to travel also due to food allergies. We always travel with a cooler and need to rent a place with a kitchen to cook. We don’t ever get a break from cooking!! It’s just as much work to be on vacation as to stay home. The way I see it, got to get out of the house!! God Bless you!!
This is really cool to read. I’m so glad you are writing it down because I’ve been curious about aspects of live with Fulton and Teddy, but I didn’t know what was rude to ask, or if you just get tired of telling people about it.
I have to be honest and say that I am probably one of those who has great intentions but might bumble the initial meeting. But I have a good heart, so hopefully you’d let me try again. 🙂 As a parent of blonde kids in a foreign country, I can completely identify with the hair ruffling/inappropriate touching/attention seeking. We hide behind our language barriers though and just smile, bow, and back away. There are some people who just don’t get how to talk to children in general. They talk at them or over them but not *with* them.
We love love love family vacations where we rent a house next door to family or good friends so the parents hang out after bedtime. If you lived closer, I’d talk you into it. 😉
I loved this glimpse into your life. And I love Fulton’s face with the statue – he seems like he’s always scheming something. Last night I was sitting waiting for my 6 year old to finish speech therapy when a little boy with Down’s syndrome came and sat in the chair right next to me. He was so little that he used my arm as a way to climb the chair and his grandparents were telling him not to bother me (in a kind way). I was like, oh no, it’s cool, I see him here every week. And then I started talking with the boy, gave him a magazine and had a good time until he was called into his appt. Here’s the thing…I have such a big heart for people with disabilities that I usually go to the other extreme and and instead of not knowing what to say/how to act, I start making myself a little too comfortable with them. I would totally be the person that would high five your son because I would want to make sure I was treating him like any other kid. But in doing so, maybe I’m not treating him like every other kid. Ya know?
I just need to remember that most people really mean well. I get upset when there’s no reason too. Even when people keep talking to him when he’s obviously uncomfortable, or grabbing his hand to shake when he’s too weak to pull away, I need to remember to respond charitably. I think Fulton would love to meet so many of you but I expect you would respect his space. Even you Colleen; if the boy with Down Syndrome didn’t want to talk or read a magazine, would you force it on him? Most people know when to back off and even when they don’t, there’s a right a wrong way to deal with it. Much of my aggravation would be eliminated if I just learned to let it go. (Rather than vent publicly on a blog?? Hmmmm…) And Pat, I’ve met that bottom one percent and I still seethe about it. Thankfully, it really is only one percent who say and do such thoughtless things.
I know it was hard for you in the first place to open up to the blog community about your challenges with SMA, but I’m so thankful you did. God created us to need each other, but we humans keep acting like we believe (and we want others to believe) that everything’s under control; we’ve got it covered. It’s hard to step into the middle of the circle and speak about your challenges and weaknesses, and I and many others are grateful for your virtuous boldness. This is heart piercing in the best sense.