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.
Palanquin ftw!
Seriously, though, what are the chances of getting a mother’s helper involved with your family? I’m guessing you can’t afford a nanny (my sister is one and I know what she makes), but what about some mid-teen, maybe home-schooled, whatever, who could help out once or twice a week (especially if they are interested in any human-related field down the line, good on a college application). That way it’s someone who knows you, your routines, the kids know him/her, extra pair of hands blah blah blah. I assume you’ve considered this and there’s a reason it won’t work.
I do think the best solution will be to hire someone and I think once we get some bills paid off it’s something we’re going to investigate further. But there are pros and cons to that which would require another whole post. Thanks for the palanquin suggestions though; I will definitely keep that in mind!
Thank you for sharing the difficulties of your daily life. I just wanted to offer you my hugs…I can’t imagine how hard that must be.
Thank you for writing this, Kelly. This wasn’t whiny, it was informative and insightful. I think you are a rock-star awesome Mom-Champion for all that you are and do. God knew what He was doing when He designed your family, each member as a unique blessing to the others, a gift of their individual gifts, talents, strengths and weaknesses. Your struggles aren’t unseen, and you are doing an amazing work.
Kelly, this is a good, honest, true and insightful look into daily life Chez Lyceum. While you certainly aren’t whining, your post has given me an attitude adjustment about how I deal with my own challenges. Perfect as we approach Lent!
is there any way you could qualify for a state program that would pay for a caregiver to come on certain days? In Virginia my friends with autistic children have caregivers in the home 40 hours a week. it is 100% covered. If there is no program like this for SMA, there should be!
I can kind of understand how you feel as I am homebound with many kids because of my own mental disabilities. I can’t leave the house with my brood because of the anxiety attacks it gives me. We do manage a few outings when I am able to arrange things so I can take at the most 2 of my children out at a time, or have the older ones go alone to play dates with trusted people, and yes, people coming to my house. One thing that is comforting is that my children really are happy being with each other and don’t seem to mind that we don’t get out much.
Thanks for sharing this. I think it’s important to let other people know just exactly what is involved in getting your boys new places. This way, people will be more willing to meet you somewhere in public or come to your house. Most likely everywhere assumes you are an expert at getting your boys where they need to be and don’t think twice of all the issues you face with each outing.
Hi, Kelly.
What you wrote and how you wrote it helped to communicate a great deal about raising Fulton and Teddy. I am glad you did this. It clearly gave me an inside view and a better understanding.
Peace,
Lori Ann
I appreciate you writing this as well. One of my best friends has Limb Girdle MD and every single time I’m with her I see the world in a new way. There is so much I take for granted. Every time she goes out requires preparation and thought and a decision on whether it will be worth the pain and struggle. I would love love love to live in a house that was more welcoming to her. I can’t imagine how much more the struggle must be with young children but this definitely helps.
No advice. But be assured of prayers!
It’s amazing how many things you have to consider- things that many people wouldn’t even think about! Eye-opening.
God bless you!
I have zero advise.
You’re NOT whining. If you ever NEED an example of whining to contrast to the challenges of your life, call on me. I can provide epic whining. Rock on, girl.
Thanks for your transparency. As parents I think it’s important to portray the truth about what we deal with on a daily basis. None of us are perfect and we all get frustrated with our situations. You’re doing a great job.
As much as I would love to invite you to my house I already know it’s a bad idea. However, my parents house is perfect for your kids to do circles around the 1st floor. Harrisburg welcomes you with open arms!
So glad you shared! Every moment of honesty like this helps people like me be more aware of ways in which we can attempt to love better, by adapting to the real needs and limitations of the people in our lives.
I was reading this and thinking, people should go visit this awesome woman, stat! We just moved into a new home closer to our friends and my family, and we have open house every Sunday, no matter what, and I have really loved it. We’re a one car family and my husband is often gone with work and other commitments, so without this weekly get-together, I would rarely see people. But we decided that we wanted to make hospitality a part of our family, and that means openness and joy, not Martha Stewart table settings and an immaculate house (white glove ready, it is not!) I hope that’s something that might work for you – it’s so nice to see folks in a low pressure environment on a regular basis. It gives such a feeling of community.
Prayers for your challenges, and thanks again for your honesty! It’s all good!
I have only one sister, 14 months older than me, and she has cerebral palsy and is in a wheelchair for life. This profoundly influenced my childhood and my life. We were not homeschooled, so at least she/we got out to school everyday, but I relate so much to all the rest of this from a siblings perspective. I can’t imagine it as a mother, but we are always very wheelchair-aware and try to help the elderly at church or anyone else we see in need of assistance. God bless you–I wish we lived closer and could have the whole family over!
Honey, this isn’t whining. This is being open and honest about your limitations with two kids with SMA. I have a heck of a time with Daniel when we visit places but it’s the opposite problem — he has no conception of boundaries and can’t understand why he isn’t allowed to just run around and open/slam doors. I can resonate with a lot of what you wrote though.
oh my friend…you are speaking my language. not whining at all. just speaking the truth as your life demands change as do your sons needs. hugs from my wheelchair accessible house to yours. We shall not be overcome by these anxieties…at least while there is chocolate to consume!
Thank you sooo much.
I stay homebound with my kids, because of my insecurities as a homeschool mom, my new belief as a Catholic, my heartful of idiosyncrasies, my sooo many things that I have convinced myself are valid. But here you are are with something more than valid, something that you desire to do but sacrifice, because of love. I feel challenged and stretched by your life.
Much Much Much Love and thank you again!
Wow, Kelly! Not whiny at all…it’s important to get glimpses into what others deal with, otherwise our world stays so terribly small. Thank you for sharing with us!
Wow. I’m a new reader and had no idea this was your life (I should do a better job with the whole About Us thingy, I guess…)!
I’ve been snort-laughing from your posts and I’m honestly amazed you’re able to do your daily thing and blog without getting on here to vent everyday like I would – this coming from the lady who trumpet-announces a pinky finger hang nail, so… But really, this wasn’t the least bit whiny – just honest and vulnerable and I thank you so much for sharing this reality (goods and bads) with us. You’ve certainly given me something to think about and consider for my own home and if I lived ANYWHERE near you, I’d stalk you until you were just uncomfortable enough to invite me over for a visit!
I can’t wait to meet you at Edel. Please bring the purse.
Thank you for sharing your struggles so honestly. For not a moment do I doubt your love. Something you said may be the permission someone needed today to admit that it IS hard, even if it is infinitely worth it. I would totally be open to scheduling the playdate at your place….just give me a 17 hour head-start and I’ll hop in the car 🙂
Oh, do I know whereof you speak!!! I don’t have children in power wheelchairs, but I have an elderly (incontinent) mom who is left side paralyzed, who cannot operate the wheelchair and who cannot drive a power chair. And I DO know that she needs to get out more, and see things, and “wouldn’t it be wonderful if we could take her to Mass on Sunday” (say all those siblings who are never around) or “come over for dinner some evening. What’s stopping you?”
Everything you have said, from the hour or more preparation (dressing, makeup, hair), packing the diaper bag in case she has a BM, into the car, (transfer out of the wheelchair, buckle up, stow the wheelchair in the trunk), drive to the place, take the wheelchair out of the trunk, transfer back into the wheelchair, arrange footrests, carrying her in at the non-handicapped home, and then sit with her to hand her food, and drink, and assist with conversation (because her hearing is bad too) and then most of the other guests, even her own children, not even wanting to speak to her (just easier I guess) so I have to sit with her so she doesn’t just sit alone staring at everyone not hearing a thing, and then the whole exhaustive process in reverse to get her home.
So when these lovely invitations to dinner DO come along, all I feel is great dread and exhaustion just thinking about it.
Oh, I hear ya’ sister! I hear ya’!
P.S. Do you have manual wheelchairs/transfer chairs you can use when you go to some places? They’re lighter and easier seating at someone else’s home, and at least your kids can be mobile if someone else is willing to push them around. But I know that only addresses one of the problems. Oh do I get it.
People who do not have children with SMA can only imagine how difficult it is to care for them. This post helps others understand everything you have to think about before you can say yes to anything. We all wish we could do more to help in some way, but completely understand how difficult it would be for you–and the boys’ routine–to have someone else do any of it. You are a blessing to ALL of your children. Would you like Addie, Byron, and Edie experience more? Of course. But know that they are still experiencing fun things–and also learning how to be compassionate and helpful toward others. Know your limits and do the best you can–which is what you already do! You can’t ask more than that of yourself. You and Tony are simply amazing and are blessed to both have a sense of humor. You are stronger than you know, so don’t be hard on yourself. Thank you for sharing!
I didn’t think this post was whiny, in fact I enjoyed “seeing” this aspect of your life. It is good to share, it opens everyone’s minds. I’ll be honest–I couldn’t help thinking, just come over here! And I think that is exactly what everyone thinks–they are happy to have you over. Whenever you find solutions to your obstacles (and to some there are none–especially the inaccessibility for the chairs). SO–hugs to you and your family!!
I’m late to commenting because I’m just reading this now and seeing a peek into what you and your family handle with SMA. Wow. Kelly. So not easy in any respect. I wish I lived closer so we could do stuff together, but now I understand how that would go for you. Sister, wow! Prayers & love.