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When your child has a Rare Diagnosis

When your child has a Rare Diagnosis

When your child has a rare medical diagnosis, you may often feel as if you’re alone, navigating some strange planet.

Aspects of your life that would have once seemed completely foreign, become your new “normal.” Parents may not experience the journey in an identical way as others, but I’m certain that we share many commonalities.

When my daughter was diagnosed with a rare genetic disorder, there was no guidebook or manual presented to us on how to cope.

We were not handed a pamphlet with concrete answers to all the mysterious questions that would arise.

When your child has a rare diagnosis, all that you thought you knew about child rearing is thrown out the window. I wish someone could have listed out the following predictions for me, when my child received her very rare diagnosis.

You will grieve. When you look at your beautiful, perfect baby, it’s hard to swallow the fact that life will be challenging for her.

It’s not easy to process that your own life will forever be “different.” Grief is cyclical; it will come and go in waves over the years, at times hitting you, HARD, when you least expect it.

It will knock you down, but you will learn that it doesn’t have to drag you under. The waves will recede and you WILL get back up.

You will cry. There will be so many times when you just wish you could magically “fix” things, so that your baby doesn’t have to struggle.

You will yearn to trade places with her and you’ll desperately want to take on what she’s going through, in exchange for her having to endure it.

You will become an expert on your child. YOU will be the one informing doctors, therapists, and teachers about her, instead of the other way around. You will seek out all the information that your brain can hold, and you will be more skilled and trained than anyone else, when it comes to the care of your child.

You will feel defeated. You will rejoice in the fact that you figured out the solution to a problem, celebrate that victory, all to see another, bigger issue spring up.

Crushingly, you will think that you have failed. However, you’ve merely ruled out one explanation, while learning something new in the process.

Your problem-solving skills will be elevated to a whole new level. Soon you’ll see that you are like a sleuth; your detective work and resourcefulness could rival any professional.

You will WORRY. You will know real fear. You will stare it in face. The “unknowns” will cause you tremendous anxiety.

You will become STRONG. Your personality will undergo a metamorphosis; you will take on a fierceness that you never could have imagined. You will fight hard, time and time again for your child, and you will not back down.

You will gain unlikely friendships that become a lifeline. Other parents that have children with your child’s diagnosis will become like family to you. You will find each other and learn a great deal from each other.

You will form a bond with parents from all walks of life, now walking in the same shoes as yours.

You will become passionate about helping others. Your heart will be transformed. Great satisfaction will be felt in assisting another parent that has been handed a rare diagnosis. If there’s anything that you can share, or any way that you can give back to make their path less rocky, you’ll do it.

You will LOVE. The indescribable love that you will experience is unlike any other you’ve ever dreamt of. Your devotedness to your child will be immeasurable – it CAN and WILL move mountains.

You will admire. There will be so many qualities in your warrior child at which you will marvel. Every milestone hit and every success will make you so very proud.

You will possess a sense of pride so big that you’ll feel as if your heart will surely explode. Be prepared for this to occur over and over again.

You will be grateful. You’ll be filled with immense thankfulness and you will find yourself overwhelmed with gratitude.

An appreciation for life will grow within you; it will remind you of all the things you once took for granted. You will suddenly see beauty existing all around you.

Above all else, you will feel JOY. At the end of the day, you may be tired and weary. You will have given every single ounce of yourself and you’ll be exhausted, but oh…the JOY.

Revel in it. Breathe it in, deeply. Holding your precious child in your arms, knowing that she is YOURS, will make every step of this journey worth it.

Hang on tightly; together, you’ve got this.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

View Jodi’s Profile

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