Becoming a Mom Living With Muscular Dystrophy: Part One of Two

Hello and welcome back to another week at humbly courageous! If you are new, thanks for stopping by!

What is it like being pregnant and parenting while living with Muscular Dystrophy is a question I often get from those living with MD who are considering becoming pregnant, while living with a genetic condition. There are so many thoughts, feelings, fear and worry that come along with this big decision. You have so much to think about. I think one of the first thoughts that comes to mind is, will my child be born with my condition? If my child is born with my same condition, am I going to feel guilty?  Is it going to be too painful to watch my child go through all the hardships that he/she will inevitably face living with a condition that hinders you so much physically? Another thing that comes to mind is will my body be able to sustain a pregnancy, and where will I be physically after the baby is born? You worry about what it will be like for your child to grow up with a mom who has a disability. Will they feel like that is a heavy burden that constantly feels overwhelming to them? Will they be embarrassed? These are all thoughts I had leading up to finally making the decision that my husband and I would try and have a baby. My husband shared some of  the same concerns, but ultimately we decided that, if  in fact our child had a disability, we would help them lean into their obstacles, and be as successful as possible, just as my parents had done for me. 

Fortunately, I got pregnant fairly easily with our first child, which was such a blessing. The first few months were pretty typical of a normal pregnancy. I had morning sickness, and felt very tired, which is the case for many pregnant women. During my 28 week visit, my doctor, who was taking some extra precautions due to my disability, wanted to monitor me and the baby. Jamie and I had been rear ended a few days before that and all had checked out at that time, but she wanted to check again just to be sure. She monitored me and noticed I was having some contractions. She sent me to the hospital, where, thank goodness, they were able to stop the contractions. I went home on a modified bed rest. I wasn't confined to bed, but I had to be really careful and had to stop working. The bigger my belly grew, the harder it became to get around. I used a wheelchair when I went out, but could get around our small house ok just walking and holding onto things. 

As the delivery neared, my doctor was encouraging me to have a c-section. She wasn't sure I would be strong enough to push a baby out. I insisted though, in true Amy fashion, that I wanted to give it a go, and try to have a “normal”delivery. I knew a c-section would be a really hard recovery for me, and manipulating my already very weakened core would make things even more difficult. After 12 hours of labor, an only partially working epidural, and just not progressing much, my doctor insisted on the c-section. By that time, I was ready to throw in the towel, and was kind of wishing I'd made that decision from the get go, although I was proud of myself for trying. I will always be glad I did. My son Luke was born a healthy and beautiful baby. 

Recovering from a c-section is no joke. I spent several days in the hospital following Luke's birth. I was on pain medication of course, as it is was a major surgery. I was also not sleeping well, because in a hospital no one sleeps well! I had been given some sleeping medication. I was breastfeeding, so I was up at all hours. One night I needed to use the restroom in the middle of the night. My husband called in a nurse to assist him with me because it was so hard for me to walk, but they encourage walking to help with the healing from the surgery. The medication on top of that made walking even more difficult. 

The next evening, Jamie had gone out to get us something to eat. Luke was in the nursery under the Bili lights because he was slightly jaundice. I was enjoying some quiet time, when a knock on the door came. It was a social worker. She came because the nurse that had assisted my husband the night before had been concerned that I wasn't able to handle being a mother because I couldn't walk on my own after a c-section, coupled with a disability! First, I was gutted, then I was furious! Lady, get the heck out of my room because I just survived a pregnancy as a disabled woman, and delivered a healthy baby boy into this world, and you are not about to take that away from me! Not only am I able to take care of my son, I will tackle more obstacles than you can imagine with a smile on my face, as I have done my whole life. I told her just that. The nurse from the night before had not researched my chart enough to know I was disabled is what I was eventually told. She assumed I was over medicating, and that's why I couldn't walk. I still burst into tears when I allow myself to go back to that moment. It is still traumatizing. My worst fear had come true. That someone would view me as an inadequate mother, and I hadn’t even left the hospital.

However, I rallied as I do, and fast forward 17 1/2 years. Luke is a runner (thank you Jesus he is able), he's extremely intelligent, and he is passionate about what he believes in. He made me a mom, and he has done a BEAUTIFUL job of being my first born son. He and I conquered and figured this out together. I had LOTS of help from my family, and my husband’s family. Many of you know my husband is an absolutely fantastic human being, and the best father. However, my family gave me the space to figure what I needed to adapt to, so I could feel confident in independently caring for my son, which was of the utmost importance to me. Luke and I went everywhere, just he and I. I wasn't afraid to take him out on my own. As long as we had our stroller or a cart, we were good! There were many tough, physically taxing days to the point that my husband would have to carry me to bed. Working while juggling a child and a household is hard! Stack a physical disability on top of that, and as you can imagine that makes things more difficult. It also makes accomplishing that even more rewarding.

Pregnancy and the c-section did take a permanent toll on my body. I bounced back somewhat, but I never have gotten back to where I was before. I have ZERO regrets, and as you will read in next week's blog post, part 2, I even did the whole thing again! Becoming pregnant as a woman living with Muscular Dystrophy, I was certainly walking humbly courageous into the unknown. I hope this can encourage some of my fellow MD warriors to make a decision around becoming a parent, no matter how that may look for you. People with disabilities are just as capable and deserving of being parents as anyone else is.💚