Becoming a Mom Living With Muscular Dystrophy: Part Two

Hello and welcome back to another week at Humbly Courageous! If you are new, I’m glad you stopped by!

My Family 

 

As I mentioned in part one, there were some serious worries, and real concerns going into my first pregnancy as a woman living with Muscular Dystrophy. The second time around was no different, but this time the concerns were a little different. I knew I could get through a pregnancy. My body had shown me that it was capable, and that there were ways I could adapt to make it through. I also knew that I had learned a lot in my journey so far with Luke who by this time was 3 years old. I had learned to adapt and care for Luke in my own unique way. This time around I was thinking, can I care for an infant plus a busy 3 year old who is very active, and has a mind of his own? Anyone who has raised a child knows that age 2 has nothing on age 3, haha! Physically, things were challenging, and to be honest I had always thought that if I did have a child, then I would definitely only have one, and be thankful that happened for me. 

Baby #2!

Really, the first two years of Luke's life I felt strongly that he would be an only child. I didn't know if I could put my body through another physical demand that is as great as that of a pregnancy. I also knew that this delivery would be another c-section. I knew the first time had caused me to be a little worse off physically, but the joy of having a son far outweighed any of that. I started to feel a nudging that I didn't want Luke to be an only child. I wanted him to grow up with a best buddy, like I had with my sister. There is no joy greater than the bond of young siblings who may fight sometimes yes, but the sibling bond is a strong one. 

My husband and I ultimately decided that trying for baby #2 was what we wanted to do. Fortunately again, I got pregnant pretty easily. Pregnancy this time around, as any mom of more than one child can attest to, was not the same experience as the first. You don't have the luxury of taking those much needed naps, and only worrying about yourself. You have another human to care for that constantly needs you. I was also working again. Looking back, I know God picked me up and absolutely carried me through that time. I was doing a lot of home visits as my job as a service coordinator with Indiana's early intervention program. I was physically about as taxed as I could be. Luckily, my husband was a great support, and somehow we survived and thrived. I believe I worked up to one month before I delivered Jack. The pregnancy was a healthy one, but I did have the same challenges getting around with my center of gravity so distorted. I also had a couple of falls during this pregnancy, but luckily nothing too serious. 

Our sweet baby Jack was born by c-section in 2007. It was a little different going in for a scheduled delivery. I knew what to expect, and honestly the delivery part couldn't have been easier. I feel like I healed a little easier from the second c-section. I think that could have just been I knew what to expect, and just the fact that I knew I had to get better quick, so that I could continue to care for Luke along with little Jack. 

Going Home With Jack

I had postpartum blues after I had Jack. It was a really hard time. I was feeling pressure to get back to work, and just juggling all of it.Two little boys, a household, a job I needed to get back to, and just living with a physical disability that makes your body so weak. It takes digging as deep as you possibly can at all times to make it work. I ended up getting an extended maternity leave because physically I just wasn't ready to be back into all of the home visiting and physical aspects of my job. I think I ended up taking an extra month. During that time, our family was adapting to our new normal. I kept a stroller in the house and that's how I got Jack from place to place in the house most of the time when my husband wasn't home. Sometimes, when he was very small, I could walk and carry him a short distance. Once he got over 10 lbs I didn't do that as much. I didn't want risk falling with him. We had a lot of family support, and that's how we made it through. I think going to work in some ways gave me a little bit of a break from the physical demands of motherhood. In my opinion, there is no harder job than that of a stay a home mom. I worked part time, so I got a little bit of both worlds. Staying home with the kids was by far more physically exhausting than my job.

When we would go places, I would load Jack in his car seat on top of the table so I didn't have to try and lift him from the ground to the stroller. Most times, I would push the stroller out to the car and transfer him into the car that way. Luke was such a rockstar big brother. He adapted in his own way too. That's a heavy load for a 4 year old, but it was worth it to him. He had a brother! He would help me carry stuff to the car like the diaper bag or my purse. He was a great helper to me, just doing the little things like bringing me stuff from around the house I needed to save me some steps. Everywhere Luke went, he ran, so it was always quick! He always did it with a smile on his face too. He just got it, that was the way our family had to work. 

Brothers!

Loading Jack up

Something I always longed to do as a mother was to be able to scoop my boys up after they fell, or just when they would raise their arms wanting to be held. I was so envious when my sister and my friends would just effortlessly scoop their babies up in one quick motion and put them on their hip and run around doing all kinds of things. I never got to do that, it just wasn't possible for me. What I did do was teach them to climb up on me. I would get to the nearest structure that I could lean against, and they would come to me. We called it monkey. They would climb up my body and once they got to a certain point, I could stand against something and hold and comfort them. Not the same as others were doing, but it was special because it was our thing. We had a lot of those things that just the three of us knew and did.

Monkey!

The level of difficulty going from one to two was much harder, but we made it work. I had to have more help from family doing certain things, but the three of us definitely did things on our own making memories together when I was home with them during the day.

Jack is now 13, and he is one of the most empathetically attuned people I've ever had the pleasure of knowing. He just feels, and knows when not only me, but others are hurting or upset. He is athletic, and runs as well as plays basketball, which is his passion. By the grace of God, neither of my boys seems to be affected by Muscular Dystrophy. Such a wonderful relief. 

This was a hard hike, but Jack's encouragement made it better!

I would like to talk more about raising my boys as a woman with muscular dystrophy in future blogs, but I will end this one by sharing a special memory, and a true lesson in what it looks like to adapt. The boys and I had tagged along with my husband on a business trip to Chicago. The plan was for us just to hang out at the hotel, but after arriving we learned that the Lincoln Park Zoo wasn't too far from our hotel. At this time, I had started using a small wheelchair for distances that we had brought on the trip. My boys were about 5 and 9 at the time. The three of us talked about it, and decided we were going to go to the zoo. Going meant we would all three have to work to get the chair in and out of the car, and that they (mostly Luke) would have to push me in the wheelchair while we were there. We were all a little nervous, but also excited at the possibility of such a fun day. I have to tell you, my boys knocked it out of the park that day. My heart was bursting with pride. I had someone take a picture of us there to remember that day, and I got out of my wheelchair for the picture. I know it wasn't easy for either of them, but they also walked in humble courage, and stepped up to the task at hand. 

If you are living with Muscular Dystrophy and are thinking of becoming a parent, but just aren't sure, I hope my story helps you to see, that just like us, our kids adapt. They learn the ropes just like we do. Children of parents who live with a disability get a front row seat to a beautiful lesson in perseverance. It really is priceless, and I believe a gift. 💚

Jack

Chicago Zoo Trip