To the Parents of a Child With a Rare Disease – From an Adult Who Was Once 'That Child'

When my parents were handed their daughter all those years ago, the doctors had no nicely packaged diagnosis to go along with the blessing of a new child. No set of instructions that meticulously explained “what was wrong” with their child. There was no Dr. Google to throw up ghastly pictures of what my future would look like or an ill-fated prognosis of all the milestones I would miss out on.

They were lost and in the dark as to what steps to take and how to provide not only solutions to manage their daughter’s disease, but also strategies to cope with a new normal.

Today, I am a parent to two wonderful boys who inherited my rare disease. And I’m not going to lie, parenting is hard!

As an adult looking back at my own life as a child with a rare disease, here are some of takeaways that have helped me.

Doctors Are Not Gods

While knowledge and expertise are to be respected, doctors are human beings and can make mistakes. A parent’s experience with their child, in most cases, trumps textbook knowledge and classroom instruction. I want people who have received a diagnosis of a rare disease for their child to know the doctor in the room is probably as lost as you are. And while they deliver the news of a diagnosis like a death sentence of all that could be happy and beautiful for your child, know there are options, even if the person who gave them their diagnosis isn’t aware of all of them. The path you choose for your child doesn’t have to be one of desperation, loss and fear.

Last Sunday, I made pancakes for my family while talking to my mom on the phone. I am only able to stir small quantities of batter at a time, use a step stool to reach the stove and take longer at this simple task, but my kids swear by the moon and starts I make the best pancakes in the world!

Had my parents believed the doctors who told them their sickly child would not amount to much, I may never have earned such high praise from the ones who mean the world to me.

Letting Go

Letting go of fear and anxiety about a future you thought of for your child helps you live in the now. Did my parents worry about my future? Sure. All the time. Did they show it? Not in the slightest. In fact, I was about 6 when I first realized I was somehow very different from the rest of my peers. A kid who recently joined my grade accosted me in the playground and called me “broken leg” because I walked funny. Confused, I replied, “Oh yeah! Well, my mom said it’s not nice to call people names!” Naturally, the goody-two-shoes-good-Samaritan reported said kid to the principal and reveled over visions of grim punishment. Later that night when I told my parents about it, I got a second helping of rice to make me big and strong for the Unkindness of the world. My parents helped me find balance in my world. Letting go of fear allowed others to be responsible for themselves and for me to take my hands off situations that did not belong to me. In a strange way it freed me from unnecessary stress, and equipped me for the bigger battles ahead.

The Power to Choose

Someone once said, “Between stimulus and response, there is a space. In that space is our power to choose our response. And in our response lies our growth and our freedom.”

When I was little, I struggled to walk. When I walked, I struggled to run. When I ran, I sought the next thing I knew would challenge me. At 16, when I told my dad I wanted to bungee jump, he folded his arms, pursed his lips, arched his eyebrows and drew the line! “I am not interested in another ER visit!” he said and he meant it.

My parents taught me the greatest lesson: fear limits you and your vision. The solution may be just around the corner, but fear keeps you rooted from taking the next step. The problem doesn’t have a solution… yet. The journey is valuable, but believing in your child’s talents, abilities and worth is equally valuable.

Not Winning on Your Terms

Being flexible is critical when you are advocating for change. As a parent of a child with a rare disease, you will encounter many different people who don’t understand your world and perspectives that often throw your world into chaos. Here’s where you need to take a step back and breathe. You have to realize change won’t happen if you appear too rigid or fixed in your views. Working with different types of people and situations — even when confronting different belief systems and ideologies — teaches you as well as your child to see multiple perspectives, understanding when to compromise and when to be open-minded.

As a child growing up in the 80s in the Middle East, I went to a mainstream school despite the fact that people with disabilities were designated special schools. At the time, my father rallied with the school to get me admitted on the condition that he would ensure I got to class on time every day. This meant, after every surgery, I was carried up two flights of stairs to sit in classroom with peers that physically were very different from me. There were no elevators and there was no provision made for accessibility. Surprisingly, my father never begrudged the school or the policies in place at the time. His aim was for his child to get an education, and working within the system, he chose the best option that was available at the time. Although this image of struggle is seared in my mind, it has not made me bitter. Rather it has made me realize that not all battles need to be won on your terms.

Positive Advocacy

Self-advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.

I learned none of this growing up! Well, not in the strict sense of how we define “advocacy” these days. My parents didn’t have Facebook, didn’t have or start a support group or search for others like me. There was no guidebook and the only form of advocacy they taught me is what they communicated to me every day — “I believe in you and I know you can succeed.” They showed me time and again they were there for me, but the decisions were for me to make. 

When my science teacher put me at the back of the class and I couldn’t see the board, I knew to talk to the teacher rather than bring the problem home to my parents.

Help your child articulate their growing understanding of not only their strengths and weaknesses, but also of the complex world around them. Practice with your child the important skill of how to ask for help in a positive way. My parents always used humor to rework situations that proved uncomfortable in the past or to simulate solutions for problems that lurked in my vivid imagination. Reinforce the fact that at school, as in most of life, politeness and a positive attitude usually result in favorable outcomes.

As a parent, you can empower your child with a rare disease to walk down a bright path. You can transform fear into freedom when you stop worrying about the “what ifs” and remember to never give up hope. Everyone has their own way of supporting their child with a rare disease.

Be soft. Be gentle. Be kind to yourself. It is still a beautiful place to be.