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My Son was Born with a Limb Difference⏤A Mother’s Journey

Finding out you are pregnant is one of the most exciting moments for the future parent(s). Picking out names and planning their entire life probably starts when you find out you have conceived. And oftentimes, the nerves kick in, especially for first-time moms.

I met Ashlyn in 2015 when she was hired to support an office I was working in. I immediately took to her because she also is apart of the same sorority as me, Alpha Kappa Alpha Sorority, Inc. We both left the company, but like most, still kept up with each other on social media. I enjoyed watching Ashlyn marry her best friend and life partner, Mychal, and pop on Instagram with the cutest baby bump.

And then on December 31, 2019, Ashlyn opened up on social media like I’ve never seen her do before. We’ve had girl chats as friends and colleagues, but I’ve never seen her share private information on Instagram. She let us know that her beautiful son, Myles, was born with several congenital disabilities that fall under an association called VACTERL.

Here is Ashlyn’s story.

What was the first feeling you had when you found out you were pregnant?

Initially, we were excited but also scared. Myles is our first child, and we were the first from both of our sides to have a baby. Before getting pregnant, I was already someone who likes to be “prepared,” so I was already in the planning mode from the beginning. Just like any other woman, I started downloading apps to track the pregnancy and signed up for newsletters so I could get all the tips. I was really extra. I even bought some books which I never read, and I tried to change my diet, which never really happened.

How did you pick your son’s name?

We went back and forth on several different names. We picked our one favorite and decided that I would make the final decision on Valentine’s Day. I knew that Mychal loved the name Myles and I wanted to love it too. After looking more into the meaning, I found several meanings, such as “Gift from God” and “Soldier.” The name also comes from the name Micheal which is my husband’s name but spelled “Mychal.” After I saw that, I knew it was perfect, and we decided on Myles Weston Ray Outlaw. Of course, we went with a “y” because we both have “y’s.” Also, my husband has two middle names, so we decided to do the same for Myles. Weston was another favorite, and Ray comes from Raymond, which is my grandpa’s name. During Valentine’s, we were still having a pretty “normal” pregnancy. We had no idea how fitting the name would soon be.

When did you find out that your pregnancy might be different than what you expected?

The concerns started when I was around 20 weeks. We went for our anatomy scan, which was a typical appointment. After this appointment, we were then told we had to see a fetal specialist.  A nurse explained that they needed better images and had trouble seeing the full heart and the right kidney. When we received this call, at the time, I don’t think we thought anything was wrong. We had already had our initial testing, and everything came back cleared. When we went to the appointment, we ultimately ended up getting an amniocentesis test done to rule out any genetic concerns. Those results came back normal, but we were still left with the same concerns, so we were referred to a fetal cardiologist and scheduled for a fetal MRI. The heart’s results came back normal, but we didn’t receive the MRI results until I was around 36 weeks.

Did you let family & friends know your son might be born with a limb difference?

At first, we didn’t know much of anything. I feel like in the beginning we were trying to stay positive. When we were going to see the specialist, it was the most frustrating thing. They were still not sure of most things but never gave any real answers. I can remember when the doctor first brought up his arms’ length measuring a little short and speaking on his hands being hard to see. At the time, I didn’t accept anything other than what I expected and chose to believe in. When I think back on those times, I’ve questioned if it was right to stay hopeful versus really trying to get the answers. Sometimes, when we choose to have faith, we are really just fearful of the outcome, which was definitely us. The doctor always talked about positioning, and that’s what we told family and friends. During the entire pregnancy, I felt like I was putting on a face. I would update our family as much as possible, but deep down, I was still trying to convince myself to continue to have faith. 

Our moms would ask for updates from every appointment, and I got to the point where I didn’t even want to tell them I was going to the doctor. At 36 weeks, when we received the results from the MRI, we found out what really was going on. His limbs were probably the most shocking, but we were also told about other complications and concerns. After that appointment, I don’t think I told anyone until much later. I can remember having a conversation with Mychal on how we were going to tell everyone because, at that time, the only people that really knew something were our parents and my friend/ manager at the time, who has been a huge support since the very beginning. We hadn’t told much to our siblings or our friends. I think that the idea of talking about it earlier on was too unknown, and I guess we didn’t know how to handle it so that others could feel comfortable. We struggled with the dialogue and the response. Once when we finally told everyone it felt like a weight off our shoulders, we quickly realized that the people around us were reacting based on our actions.

Describe the support your spouse, Mychal, gave you during your pregnancy after you found out?

The amount of support and patience my husband gave me was unreal. From the very beginning, he was all in and present for everything. Even during our worst days, I knew I could get through it with him. After every appointment, we would talk through what we were feeling or hold one another in silence. Before Myles, like every marriage, we had things we needed to work on and still have things we need to continue to work on, but there was such a shift in our relationship when we first found out there were concerns.

We quickly became more than just husband and wife; we became partners. Even spiritually, we made a transition together. Before Myles, we prayed so hard while we were pregnant, and we both felt the same disappointment when what we were reading and praying for didn’t come to pass. After Myles was born, we took our own individual time to heal, but we supported each other.

Personally, I had a tough time with it during the pregnancy, but every raw feeling I was having, I could openly express it to Mychal with no judgments. With all of this, we know that there is a purpose. When God was writing our story, he chose Mychal to be my husband and my strength. Last year was a difficult year for us, and even now, I sometimes need daily encouragement, and Mychal gives me that. Even before Myles, he always said that together we could do anything. We are beyond blessed to have him in our life.

What is VACTERL?

VACTERL is an acronym that includes seven birth defects/anomalies, and to be diagnosed, you must have 3 or more of the characteristics. Myles was born with vertebral defects (V), anal atresia (A), renal abnormalities (R), and limb differences (L). According to research, there is a less than 1% chance that a child is born with this condition.

How did you find the strength to talk about it openly?

I think that I found my strength when I started being open with God. I had so much anger towards Him, and I didn’t know what to do with it. I knew that it was no fault of my own, but I was so hurt by what I thought He should have done to fix everything. I had to decide that I wanted happiness for myself so that I could be a better wife and mom. As I started to talk more about it, it became more therapeutic and healing for myself. I want to bring awareness to children with differences like Myles, but I also want to shine a light on the strength and patience it requires for healing when families face the unexpected with their child. I especially want moms going through something similar to know that their feelings are valid, and I believe it is necessary to go through those feelings.

What is your favorite thing about Myles?

I love his determination and the smile that follows after accomplishing what he worked hard to get to. At only 16 months, he does not give up on things quickly. He will work at something and try at it, however, many times. Also, he loves the praise after it. It’s the best feeling to see him do new things in his own way and then cheer him on afterward.

What has this taught you about yourself?

I’ve learned that who I am is exactly what Myles needs. When I was pregnant, I was so fearful that I wouldn’t be able to do this or be strong enough.

I’ve found a new level of patience and strength that I didn’t even know that I had. I’ve also had to take a hard look in the mirror as well. I’ve learned that my thoughts and energy towards things can affect everything. I’ve learned to give myself grace even when I feel like I should be doing more. Every day is a new day to learn and keep pushing forward.

How do you work on your self-care and wellness being a caregiver for a young child living with a limb difference?

It’s still a work in progress. It’s normal as a mom with a child with different needs to always feel like only you can do it. In the beginning, I had a hard time caring for myself. We had so much going on with Myles and trying to get him through surgeries that I didn’t really think too much about myself. Every day, I have to remind myself that I need this, or else I won’t be any good as a mother or a wife. Along with my husband’s help and our village, we try to utilize my mom, and before Covid, my friends would come over so I could take a shower and a nap. I would love to say that I run or workout every day, which I did before Covid, but I’m not as disciplined as I once was.

Lately, I’ve been trying to start my day with God to keep myself centered, whether that’s reading a devotional, listening to gospel, or listening to a sermon. I’ve also found it really therapeutic to journal my thoughts and write down how the day or week made me feel. After writing things down, I like to think of ways to see things differently and develop a different perspective.

What advice can you give to other parents about raising a child that needs additional support?

Just like raising a child without special needs, there is no manual. You have to take one day at a time and try not to look too far into the future. There is no way to plan for what God has in store for us, but as Myles’ parents, we can show him a life without limitations. I feel like, for us, we have to change our perspective on things constantly. It’s easy to be sad and concerned about all the things your child may need or go through. I would challenge anyone in a similar situation to ours to accept what you cannot control and choose to live, love, and focus on possibilities, not limitations. Also, celebrate your child no matter what, challenge them, allow them to explore, and educate yourself as much as possible so that you know how to support them through this journey.

Although Myles is still a baby, we often think about future questions and interactions with people. We know that we, as parents, have to become as comfortable as possible and then prepare Myles for the world. As we do our part, I think it is important for parents/families to teach their kids what it means to be different and how important inclusion is. 

Everyone is different in some way. I feel education is key to promoting inclusion in our society. Tough conversations are necessary. A few minutes of uncomfortable dialogue with your children may erase one of many inevitable uncomfortable experiences for someone with a difference. One less is a great start! We know the questions will come, and we plan to prepare Myles and ourselves to engage and educate people when the opportunity presents itself. We truly believe that promoting inclusion benefits all, and we will continue to do so.

Ashlyn shares her family’s journey through beautiful pictures of Myles’ joyful grin and happy energy on her Instagram. The stories and vulnerability make Ashlyn relatable to many. Follow her journey; trust me, when you see Myles’ smile pop on your feed, your day will get a little bit brighter. Instagram: @_aboutlaw

Creator + Founder of @BlackWifeLife. Champagne, Curls & Coffee.

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