I get a lot of looks and questions when people see me pushing around a walker or riding in a wheelchair. “What happened to you?” “Were you in an accident?” “Did you have surgery?” “Did you break something?”…
I’m still trying to come up with a crazy and fun answer instead of the boring “No, I have Friedreich’s Ataxia…”
Once someone finds out that I didn’t have surgery or break something, they usually get quiet; feel uncomfortable and awkward for even asking. But luckily, for them, I make it un-awkward pretty fast! I make light of the situation and have some fun with it–I mean, who wants to hang out with a Debbie?!
But in all honesty, I get it. I’m not your average 27 year old, mom. I understand the looks. The curiosities. The questions…”Hold the phone, you’re a mom?” “I don’t even have F.A. and I’m exhausted raising kids. How do you do it?”
Well, besides my Super Mom powers, I’ve learned a great deal of different techniques in taking care of myself and a baby. I must say, a lot of things I’ve done before can still be done; it just takes me a hell of a lot longer. I may look awkward and uncoordinated, but hey, it will get done! I just have to tweak things a bit.
When Eli was a newborn up until he started walking, I was able to take care of him by myself at my house. I put him in a bassinet on wheels or a stroller to move him around the house. He slept next to my bed in a pack n’ play. I had his bottles all set up on my nightstand so I was always ready for those late night, middle of the night, and early morning feedings. Was it difficult? Hell yea! Was I exhausted? More than ever! But, I wouldn’t have felt like a new mom if I hadn’t experienced that on my own. I did get frustrated; especially at the little things: dropping Eli’s binky on the floor, spilling his formula all over, cleaning up all his toys, washing the endless pile of dirty clothes or the WORST, when Eli would be crying and I could only sit to hold him. Like most babies, Eli loved to be held while standing and I couldn’t do it. I hated that I couldn’t. I beat myself up for it. I was afraid he would not want mommy anymore or resent me for not being able to do what everyone else could do for him. I know it sounds dramatic, but when you’re a mom you always think of the things you’re doing wrong instead of everything you’re doing right.
But, of course, I was wrong…Eli and I have an extremely special bond that most people wouldn’t understand!
Eli has learned a great deal of what I can and cannot do and has grown to be my special helper. He holds out his hand to help me up the stairs, carries things for me, brings Sylvia (my walker) closer to me, grabs me a water out of the fridge and the list goes on and on-he’s growing to be quite the gentleman!
Now, Eli is 2 1/2 and busier than ever, so I take the help when offered!
I have an odd living arrangement (what’s new? Nothing about my life is ‘normal’): as I said before, I have my own house, but I only go there when Eli is spending time with his dad, which is a nice, calm escape to relax and catch up on rest, since Eli keeps me on the move! When Eli is with me, we stay at my parents to get that extra help I need. Just because my parents are around, doesn’t mean everything is easy Peazy! I may need help with bathing Eli, cooking meals, and chasing him down when he runs from me, but I’m still his mom. I play with him, we eat my our meals together, I change his diapers, get him dressed, drive him around, discipline him, cuddle with him, read to him, watch movies together…
There’s ALWAYS a way to bond with your child even when you’re physically limited. You just have to find what works!
Some of Eli and my favorite things to do are:
~watch movies-there’s nothing we enjoy more, than cuddling up and watching one of our favorite movies. Usually Toy Story, Shrek or Dr. Seuss. I love them just as much as Eli, so it’s nothing for me to keep watching it once he falls asleep! And sometimes when I’m feeling extra nice, I treat Eli to dinner and a movie-his fav!
~playing on the iPad-I’m still stunned that Eli knows his way around the iPad so well. He turns it on, swipes the screen, finds his apps, navigates in the apps…he’s so smart! (Biased mother) and he knows how to YouTube videos. Haha. Yes. Crazy…I know!
~building blocks, playing with his race cars, and pretty much anything we can play with on the floor, we do.
~having our weekly treat at Starbucks!!
~exercising together- I’ve found some fun and creative ways to get Eli involved in exercise and it’s benefiting us both! F.A. Or not, I highly recommend getting your kids involved in exercise. And what better way, than with you?!
I try to always keep a positive frame of mind, but it’s so hard to fight away those “what if’s” and ” why me?” that seem to come to mind more often than I would like.
When I was little and people used to ask that infamous question: “What do you want to be when you grow up?” My response always seemed to be a list of 3 different answers: 1) Become a Veterinarian 2) Become a hair dresser or 3) be a stay at home house wife/mom. I would get married at 23, have 5 kids (3 boys, 2 girls) by the time I was 30.
Hahaha! Gosh, the things we think of when we are young! I think it’s safe to say, as much as I love animals, I will not be going to school for 100 years to study them. I am good at two hair styles: throwing it up in a messy bun and slapping the hair straightener to my hair for the ever so simple, straight look. Aaaaannnnd I am 27, no husband, one kid….close enough, right?
If you were to ask me this exact question, now, I honestly would say: to always find happiness and to keep fighting for a treatment for F.A. I guess those don’t really constitute for a “job” but it definitely sums up what I want out of life. Most people want to be rich, buy expensive cars, big houses, jewelry, bigger boobs, smaller nose, plump lips…I mean, I probably wouldn’t turn away some new knockers. I could use a new set of those…but for real, all I want is to put my damn high heels back on and dance the night away. Is this too much to ask?!
Living with a life altering disease definitely changes the view on life. Although, I can’t speak for other people who have been diagnosed with something life altering, I can say I cherish the smaller things thrown my way. I look at things in a different light. A brighter light. Finding ways to achieve things in a manner I never knew I could even do, is rewarding. I surprise myself all the time with overcoming obstacles and challenges. And I will continue to strive at doing so!
One of the greatest gifts about life is knowing everyday has endless opportunities!