HUFFPOST PERSONAL

How A Magazine Cover Helped Me Feel Less Alone As A Mom Of A Child With Disabilities

The tattered magazine cover I've saved since 2013.
The tattered magazine cover I've saved since 2013.

I was straightening up my living room when I found it. As I was leafing through old papers in a basket tucked inside one of the cubbies of my coffee table, I discovered the wrinkled piece of paper, edges torn.

It was the detached cover of a parenting magazine from February 2013 that I had ripped off before recycling the remainder of it. This is not the kind of artifact most people would hold on to. But, for me, this glossy sheet held so much meaning.

When I received this magazine many years ago, my daughter was just over 2 years old and was struggling to meet developmental milestones on time. The day the magazine was delivered to my house, Evalyn was 25 months old and she was not yet walking.

Evalyn had a rough start in life, born with a serious congenital heart defect. After birth, she was immediately admitted to the NICU due to respiratory distress and other concerning issues. I watched helplessly as my baby, my first child, was wheeled away from me, out of my view and down the hall.

While still in a postpartum daze, I felt my heart leave the room. Just a few hours later, my baby was transferred to the cardiac unit of a children’s hospital over an hour away. Evalyn remained hospitalized for 66 days, during which time she underwent her first, but not her last, open-heart surgery. 

Evalyn in 2011, after her second open-heart surgery.
Evalyn in 2011, after her second open-heart surgery.

My first few months of motherhood included long daily commutes to see my child in the hospital and a crash course in cardiac and other medical terminology. The days were long and the nights were longer, as that was the time that I was apart from my baby. 

At a little over nine weeks old, Evalyn was finally discharged into our care and we were able to take her home. We were ecstatic, but knew we had a long road ahead.

In fact, our journey as parents of a child with disabilities was just beginning.

A few months after bringing our baby home, we realized the severity of her developmental struggles and reached out for assistance through our local early intervention program, which provides services to children with disabilities. Evalyn began receiving various therapies when she was only five months old. 

During physical therapy, we worked diligently for many months to help her strengthen her core and master “small” skills that other families wouldn’t think twice about. With time, Evalyn was able to sit up independently and eventually pull herself up to a standing position. 

I will never forget the day that I walked into her room to see her standing in her crib. She had done it! She had pulled herself to her feet all on her own. 

Evalyn was 20 months old. 

Each “minor” task she accomplished was cause for a major celebration in our home. The celebrations were interspersed with frustrations, however.

We worked so hard with her, but she continued to struggle. Some things that so many people take for granted were still so far out of reach for us. It was heart-wrenching at times. And, of course, the biggest gross motor task of all did not seem to be coming. At over two years old, our daughter still could not walk.

Around that time, our physical therapist lent us a walker so that Evalyn could practice taking steps at home. While I was grateful for the help, I also felt a little piece of my heart break. I feared that this meant she may not learn to walk alone. 

I felt so isolated during this time. I watched my friends’ children and the other toddlers in daycare running everywhere, while my daughter of the same age could barely stand unassisted. Every day I was forced to face the possibility that my daughter might never walk alongside her peers without help. If that happened, what would it mean? How would we help our daughter? What would her future look like?

My worries about my daughter’s future consumed me. The “what ifs” took on a life of their own. I did not have answers to the questions I had, and the unknowns could be overwhelming.

Every day I was forced to face the possibility that my daughter might never walk alongside her peers without help. If that happened, what would it mean? How would we help our daughter? What would her future look like?

Everything felt exponentially worse for the mere fact that I felt alone. I felt that no one understood what I was feeling. I also felt that I might be judged if I shared my worries. My daughter was home with me. Shouldn’t I just be content with where we were? After all, she had come so far. 

I was not very open about my feelings and what our family was going through then, and I did not know other families who had children with disabilities. I was not connected with social media enough at the time to be able to read stories from other families or express my feelings to people who had been through the same things. I had a difficult time processing it all and often tried not to think about it. It was simply too hard.

And then, just like that, this very special magazine arrived in my mailbox.

The white cover pictured a girl with blonde hair, a little older than Evalyn was at the time. She wore a black-and-white polka dot sweater with a pink tutu skirt. She had a colorful necklace around her neck and a beaming smile on her face. But what stood out to me the most — the most beautiful and eye-catching part of the picture ― was that this little girl was using the same walker we had in our home! Almost the exact one, except for the fact that ours had a silver frame instead of the gold the little girl used in the picture. 

I can’t describe to you the feeling of reassurance and peace that came over me. I felt like the magazine was comforting me, and in its own way, saying, “See, Mama? You are not alone. Your daughter will be all right. No matter what, she will be all right.” 

This sweet, smiling girl in the picture gave me hope. She showed me that having a walker was OK, and even if my daughter needed it always, she would be OK, too. 

I did not know what the future had in store for Evalyn back then. I kept the magazine cover so that I could show it to her one day to remind her that she isn’t alone; that she never was. And ― if I’m being honest ― to remind myself as well.  

We were incredibly fortunate that at 30 months, Evalyn took her first unassisted steps. It was the beginning of a long road, paved with continued physical therapy, ankle braces and new medical diagnoses, but our daughter can walk independently and confidently now. 

Evalyn continues to overcome challenges every day. We are so very thankful for every milestone she reaches and every hurdle she clears. We do not take anything for granted when it comes to what she can do. 

Evalyn in 2019, now 8 years old, holding the special magazine cover.
Evalyn in 2019, now 8 years old, holding the special magazine cover.

While Evalyn only had her walker for a short while, I will always remember how I felt during the uncertainty of that time and how isolated I felt. I thought I was alone in what my family was experiencing and what my daughter was going through.

I have felt this same way many times during my journey as a parent of a child with disabilities. And every time I start to feel like no one could possibly understand, I am reminded one way or another that I am not alone. 

No matter what our journey looks like, there are others who know the same path. There are armies of people who truly “get” where we are and where we have been. We just need to know where to look for them.  

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