Welcome back, after tackling the topic of mental health with Muscular Dystrophy last week, I thought I'd talk this week more about something that brings me a lot of joy, yet challenges me more than anything ever has in my life! Being a mom with a disability. I have written a couple of blogs about each time I was pregnant and what that was like as someone living with MD. I said I would touch more on what it was like raising kids while also juggling a physical daily challenge. So, here's my experience so far with that! I have two boys who are now 13 and 17 years old! Time certainly goes by too fast. Don't blink.
The stages in my life, going from living at home, then to college, then to moving out on my own, adding a husband, and then two kids definitely has just kept increasing my responsibilities and things that I am in charge of handling. When it's just you and your husband, the laundry loads are smaller, the grocery shopping, meal planning, and cooking are simpler. I got to where I had all of that down, and managing it while holding down a full time job was manageable. I was also in my 20's, and a non disabled body even breaks down and gets weaker as we age, but having an aging disabled body is a double whammy!
I won't go into all of the details about how the responsibilities, and work increases when you have a child. It's pretty obvious that the work load would increase. Combining that with lack of sleep, can take a huge toll, and it certainly did with me. As the boys got older, in a way things became easier. Those younger years before they can walk, that can be hard because with MD your arm muscles are weak too, so lifting is hard, and carrying them while walking wasn't much of an option for me. Getting creative was key. Using a stroller to get them around in the house was a must. I could transfer them from the stroller as long as I was sitting or standing leaning against something for stability. I encouraged them to use their legs from very early on and that really helped me too, so they weren't so limp.
When they start crawling and walking, that is helpful in some ways, but a whole new level of exhaustion trying to keep up with them! If I went out alone with my boys, I had to make sure I had a plan, always. That's something I would like to touch on more in a different blog. Helping others understand why every little detail has to be planned in our minds before we venture out. Spontaneity is hard for me for that reason. To keep them safe, I had to be sure that they wouldn't be in a place where they could run from me, because that's what toddlers do. They run, a lot! If they were to get away from me, I wouldn't have been able to run after them. Park outings or anything like that, I had to do with my family or friends. Just for safety reasons. That didn't stop us from doing other things together where I could keep them in a stroller. My boys are almost 4 years a apart, so my oldest was getting that down by the time his brother was born. I had to teach them that I wasn't able to run after them, and that they needed to stay with me to be safe. They can learn to adapt, just like I do, and they did.
As they have gotten older, they can help do some things around the house to lighten my load. In full transparency though, I haven't been great about enforcing that. Before I had kids it was a fear of mine, that my kids would feel burdened by my disability. I never wanted them to feel like they had more responsibilities because of my limitations. Because of that, I haven't given them a ton of duties at home. I'm just being honest, and I have talked to them openly about this. I also struggle with wanting to have control, and independence. I am a work in progress.
They do help me carry groceries in, take trash out, and some others things around the house if I ask them to. They are both busy students and athletes, so I feel like they have full plates as it is.
As far as the emotional side of parenting with a disability, that has been hard too. When the boys were younger, and in elementary school, I was still working, so volunteering at their schools wasn't always easy. To be completely honest, I kind of liked having that excuse. One of my biggest nightmares is to walk into a classroom full of kids, who are unpredictable, and can say really hurtful things. Some of those feelings, I'm sure, are from past trauma of those experiences growing up. It's hard to hear those things, even as an adult when you can understand more that kids are usually just curious, and maybe don't ask questions in the most tactful way. There was also a part of me that didn't want my boys to be embarrassed by me. Again, not saying that was the right thing to do, but it's an honest account of how I was feeling at that time.
As I had to use my scooter more and more, they also took on the responsibility of helping to load and unload it. They have openly expressed that they don't love doing that, haha. I think partly it was because it draws attention to us, which is the last thing a teenager wants, but also it's just work and teens also don't love to work. As the boys get older, we are able to have more open and honest conversations about the times they have been embarrassed by me. While not easy to hear, I understand it. My older son wrote a beautiful paper for one of his high school classes about the first time he and his brother took me out with my wheelchair. It was an emotional read for me of his thoughts and feelings about the experience. Just as my disability is unique, so is their experience of being the son of a mom with MD. There aren't a ton of people around for them to share those same experiences with, and as teens they probably aren't in a space to want to do that yet. I hope when they are ready they can connect with others who have a mom with MD.
Walking humbly courageously into being a mom with MD has been one of the biggest leaps of faith I have ever taken. I'm so glad I did. My road to accepting myself, disability and all, has been a long one full of joy, heartache, frustration and lots of tears. I'm so glad that I have grown strong in my faith, because that is what ultimately got me where I am today. My beautiful sons inspire, motivate and amaze me daily. Sure there are challenges, no doubt being a parent is hard on many levels, but it's totally worth it seeing your children grow into who they were meant to be.
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