Happy Mothers’ Day! Raising abled children has its challenges but it’s nothing compared to the challenges you will face when you have a child with chronic conditions. Disabled parents have to go to a lot more doctor’s appointments than abled people do and learn a thing or two about accessibility. When your abled it’s always good to learn what it means to be accessible to improve the lives of disabled people but if you don’t want to you don’t have to. No one knew I was going to be disabled when I was born because my mom didn’t want to know the sex of the baby and I was a complete surprise in the delivery. If you were born with Spina Bifida today it would be less likely that this would be a surprise because there is so much more they can do now to improve quality of life that they couldn’t in the nineties. My mom has raised five kids and out of all of them, I am the only one that has been disabled which makes things different because you can’t raise disabled people the same way you would abled people. Parenting a disabled child has a lot of rewards but also more responsibilities than abled parents. In this post I am going to talk about some things things my mom has had to do raise me that most abled parents will probably never even had to think about.
Insurance company battles– If it wasn’t for my mom I would be in a massive amount of debt because insurance never likes to approve any necessary medical procedures or supplies that I may need. It’s truly an act of Congress to get these things approved and I am so lucky I have a mom who is willing to do deal with all the aggravation of insurance companies. I promise you when insurance companies see a doctor’s order they think to themselves let’s make life incredibly difficult and deny this necessary medical equipment because we know better than a medical doctor! Having a mom that is the squeaky wheel pays off because sometimes you have to be annoying in order to get stuff done!
Takes me to my doctor’s appointments-If I absolutely had to I would take public transportation to my doctor’s appointments but I am lucky my mom is willing to take me to all my medical appointments and I don’t have to. They are not always reliable and usually they get you to your appointment three hours early or an hour late which can be annoying because then your stuck at the doctors all day when it should only be an hour! I know I will eventually need to take public transportation when my mom is unable to take me to a doctor’s appointments but for now, I am grateful I don’t have to spend a day at medical appointments.
Puts up with ableism- When I was born somebody told my mom that she would have been better off if she had an abortion. My mom kindly said to her that children are a blessing and even if that person faces some challenges they still deserve to live. To have a disabled child is stressful enough because parents always have some uncertainty and remarks like this should have never been said. Disabled people are not the only ones that have to put up with ableism but a lot of parents do too and my mom probably handled this a lot better than I would have because I have zero tolerance for this kind rudeness.
But why? When you are parenting a disabled child one of the things all parents have to think about is how am I going to answer the why me questions. If you kids are really young they may not wonder about it yet but at some point they may realize they are different and want to know why. Like most disabled kids I did wonder why I was different and asked my mom the question most parents hope they never have to answer. Don’t try and dodge this question or act like you have all the answers because if you don’t answer it someone else will and in my experience strangers aren’t nice about it. It’s better to prepare your kids than to let society do all the work for you!
Makes sure I am safe alone- Cooking is hard for me because I can’t easily use a microwave or really a stove at all without their being serious risks. My home is not totally accessible but I unless I were to live on my own I don’t expect it to be and the things that matter are accessible. My mom sees my struggles on a daily basis and has some idea of what is difficult for me what isn’t more than an average person. Sometimes my mom is not always right with what she thinks is accessible but that is okay because at least she is trying. It is kind of hard to know if you don’t experience a disability because a lot of things seem like they would would accessible but are anything but that. One of the things I struggle with most is cooking so whenever my mom knows she is going to be gone a while usually she prepares something so I don’t starve because I will! I can’t really use the stove because it’s dangerous but we have a microwave that sits on our countertop which looks tacky but it not their for looks and it’s only there so I can safely microwave a meal. One of the most common injuries that happen to people with Spina Bifida is they get burned because they are using a high top microwave when they shouldn’t be.
Takes care of me during surgery recovery- If it wasn’t for my mom taking care of me during surgery recoveries I’d have to hire someone because for most of my medical procedures there is no way I could care for myself. My mom has been there for all my recoveries and even stays at the hosptial to make sure I am getting good care. Some doctor’s even think she is a nurse because she know ways more medical facts about my condition than I do which is probably due to the fact she pays more attention at my medical appointments than I ever have. We could hire a nurse to come take care of me when I am recovering and unable to do things myself but nothing beat care from your mom and who wants to do that when you don’t have to!
Cheers me on at therapy– My mom was by my side for every therapy session even when I was screaming bloody murder which is where I got the nickname fire engine because that is literally what I sounded like. My mom knew walking was important for independence and although I screamed my little brains out I still worked but I just cried while doing it so that was not a reason to stop! Even now with my hip replacement rehabilitation, my mom wants to watch me do physical therapy to see if there is anything outside of therapy she can do that could help improve strength. A lot of disabled parents won’t teach their kids how to walk or dress themselves even if they can because it’s easier not to. Life will always be hard and even if you were someone’s slave you still can’t erase their physical challenges. You are actually making our life easier by making us attend physical therapy to learn life skills because the reality of it is someone may not always be there to help us with everything. You are doing your child a disservice by not teaching them important skills they are perfectly capable of learning. It’s okay to help disabled people but to feel sorry for them and to use their disability as an excuse for everything is not okay. We may hate you for making us go to weekly therapies in the beginning but year down the road we will be very appreciated that you did!
My mom does more for me than people give her credit for and I probably don’t thank her enough for everything she does. Sometimes my mom doesn’t have time to exercise because she is on the phone for hours with insurance companies trying to get me necessary medical supplies which I have never even done. I am thankful she is willing to do that for me because if something wasn’t paid or got denied I wouldn’t know what to do about it. Everyone was surprised I was born with a disability because no one it so it has been as much of a learning curve for my mom as it’s been for me. My mom has taught me as much as I taught her if not more and that is where I learned that it’s okay to be different and not want to be someone else but embrace your disabled body. If my mom never taught me those important I would probably be one of those people that sat in my home depressed and waiting for that cure! To all the disabled parents I wish you a happy Mother’s Day and remember that disabled people don’t need you to fix them but all we need is your love and acceptance.
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Really beautiful and heart warming post. Your mom is doing an amazing job! Wishing her a very happy mother’s day! ❤️
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Wow, such a beautiful tribute. Brought tears to my eyes. The love of a mother like this is the most prescious thing on earth. I’m so glad you have her in your corner.
What a wonderful, loving tribute to your mother! It’s great that you recognize all that she has done to help make your life better 🙂 I hope you shared this post with her.
I could really relate because I have a chronic illness AND at one point, both of my young sons did, too (it’s genetic). The younger one thankfully recovered after 10 years (his was milder), but my older son is now 26 and has been sick for 17 years (and me for 19 years), so the two of us have moved through this crazy life together for a very long time. What you said about insurance and medical appts especially rings true – I often say that dealing with the medical stuff is like a full-time job! Even at 26, I still go to my son’s doctor’s appts (at least to our specialists) because he’s not always well enough to understand and remember all that is discussed. Those expeditions wear us both out, but we actually enjoy the time together and each understands what the other is going through.
Thank you for taking the time to write such a beautiful, compassionate tribute to your mom!
Live with ME/CFS
My Rockin Disabled Life
Your welcome, I shared it with my mom so as far as I know she read it! My mom still goes with me to all my doctor’s appointments and I will be twenty-nine this year because sometimes I get overwhelmed with information and miss important things so it’s always a good idea to have someone else there taking notes.