To the Parents Whose Children Have Been Diagnosed With a Rare Disease


Welcome.

Today is the first of many days that your heart will simultaneously break and be put back together at the same time. After all, when you agreed to the testing that has led you to this moment you may not have really expect for the results to bring you here, to this point, an answer. An answer that will undoubtedly leave you with more questions than you even know to ask and one that will never actually bring you any real type of closure.

Whether you have reached this point while your child is still in-utero, hours, days, weeks or years old, those of us who are already on this journey may become your best friends. We have all worn a similar pair of shoes and while our children may not have the same diagnosis or the same presentation of the same condition, we all get it in a way that others will never be able to. No matter how far along we all may be on our own individual journey. I can assure you, some of us still grieve at various times and even if we look put together, we continue to take our turns falling apart.

While I wish I could offer you a way to heal your now broken heart, that will only come with time and in ways you aren’t capable of grasping today. Today is the beginning of your new journey, please try to wade through the waters slowly, and at your own pace. The waves will come crashing at you and you may feel like you are drowning, be sure to grasp onto that life line even if it leaves just your nose and mouth out of the water. Take deep slow breaths and remind yourself that nothing has changed since the moment you were actually told there was a reason for what your child has been going through.

My new friend, what I want you to know is that no matter how much time continues to pass from this day, the emotions may remain raw and triggering moments will catch you off guard and always when you least expect them to do so.  You will welcome new parents into this club more than you would prefer, and each time it will be a moment mixed with excitement and sadness. You will want to tell them everything you have learned since you first stood in their place, but you will remember back to that exact time and you will take a deep breath and just tell them to contact you when they are ready.

One of the most important lessons I have been taught on this journey is that some things we all have to learn on our own and at our own pace, but eventually we all learn it.  There is no right or wrong way to sift through the cobwebs you have found yourself tangled in, so find a good circle of support, grab multiple boxes of tissues, and tell yourself that you will survive. It may not be easy, but “the greater your storm, the brighter the rainbow” — original author unknown.

Sincerely,
A mom to a child who was diagnosed three years, four months and 11 days ago.

Getty image by KatarzynaBialasiewicz


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

How I Approach Life Differently Since Parenting a Medically Complex Child

The past year has been one of reflection, especially as a parent to a medically complex child. I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital [...]
10 Ways Anxiety 'Shows Up' With Rare Disease

10 Ways Anxiety 'Shows Up' With Rare Disease

If you have a rare disease or parent a child who’s rare, it’s extremely common to experience anxiety. In fact, a staggering 82 percent of people facing rare disease deal with anxiety on a daily basis. Having anxiety is an important part of the rare experience we need to start talking about. Mental health matters, and [...]
two women talking over coffee

5 Things to Remember If You're Trying to Explain Your Rare Disease

Do you think explaining your rare illness to someone new can cause you more anxiety and flares? Dealing with any chronic illness can be anxiety-inducing and isolating when others don’t understand. It is very discouraging when we can no longer live a “normal” life, but we “look normal” to the world. It becomes even harder [...]
woman listening to music with headphones on

The One Thing That Helps Distract Me From My Pain

I don’t generally struggle with anxiety. It doesn’t mean I don’t get stressed about certain circumstances. Of course I do. We all do. In general, my overall health situation doesn’t stress me. I accept it for what it is, and I’m adjusting my life accordingly. Pain however, when it is at unrelenting levels day after [...]