Home 22q11.2 Coping with a Child’s Diagnosis – Part 3

Coping with a Child’s Diagnosis – Part 3

by Summerly Rowlands

Finding Your Why

When a woman becomes pregnant, she doesn’t think of the things that could go wrong, because that honestly seems so outrageous that *our* or *your* baby would be born with a disability or a diagnosis. But there’s no discriminating here – it can happen to anyone. And when it does, it challenges everything. Having a newborn is life-changing in itself, but having a special needs or medically handicap newborn changes your life in a way that it won’t ever again be what you thought. While all children are created exactly as they are meant to be and I’m thankful every day to be Izzy’s mom, sometimes things just don’t seem fair. Why us? Why our child?

It took me some time, but I have been able to come to an internal understanding to that question – why us, why our child. I know it’s not easy, and there’s a sense of heartbreak with it all, but the overpowering sense is love.

To dive deeper, below are my responses to a 22q questionnaire I took part in. The questions are 22q specific, but could really relate to all diagnoses.

For any parent trying to understand “why my child”, I encourage you to really dig deep & find your reason. You don’t have to share it with anyone, or you can share it with everyone, but as long as YOU understand the meaning behind it all, that’s what matters, and that’s what will help get you through.

What does it mean to you to be a parent in our 22q community?

It’s hard and it’s emotional, but it’s also eye-opening and rewarding. At first I couldn’t understand why ~ why us, why our child? Now it makes sense. It took time and patience and tears to look within and recognize, but I have found my greater answer – there’s a deeper meaning behind why Sterling & I were hand-selected to be Izzy’s parents, a meaning that proves all 3 of us beyond lucky to have one another.

What advice do you have for a newly diagnosed individual or family?

Have hope. There are good times and there are bad times, but know that a diagnosis does not define love and it does not have to define life.

Are there any misconceptions about 22q you would like to share?

Everyone’s path is so different with this diagnosis because the range of symptoms is so wide. Don’t google. You’ll see the horrific stories and definitions. Listen to your doctors. Your case is its own.

What has your child taught you? Or what has having 22q taught you?

Life is beautiful. And life is short. The moment our geneticist told us the life expectancy for our daughter, there was no more feeling sorry for ourselves or sulking in the unknown and what-ifs. There was only an urgency to live and to laugh and to love and to show her every little thing we possibly can. She is beautiful and she has taught us to hold onto hope and to believe in miracles.

What do you wish for your yourself? For your child? For the world to know?

My wish for my child is to live a safe, happy, fulfilling, and healthy life. It’s the same wish I have for my other children, diagnosis or not. And I wish for them to make impactful change, big or small. Make a difference. Speak your voice. And then the world will know you. And the world will be a luckier, brighter place because of you.

Izzy’s already doing her part and she doesn’t even know it yet.


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