themighty logo

When Self-Doubt Overcomes You as the Parent of a Child With Turner Syndrome

My daughter has Turner syndrome, a genetic condition often resulting in small stature and premature ovarian failure, and sometimes other complications.

She is so beautiful, and tiny, and just perfect. I am so incredible lucky to have her, she is my “one percent miracle” and I wouldn’t trade her for the world.

However, I have kept her diagnosis a secret from almost everyone in our lives.

Medically, I am on top of it. I know what our options are, and I know the paths to pursue. I am confident I will make the best decisions I can for her, because I refuse to fail when it comes to my children.

What I don’t know, however, is how she will feel about it, and frankly, it scares the crap out of me.

Will she play with dolls growing up and want to be a mommy like I did?

While I did choose a more traditional life, I know if I was told I had Turner’s as a kid, and having biological children most likely wasn’t a possibility for my future, I would have been beyond devastated. Just absolutely wrecked. Inconsolable.

My daughter is her own person, with her own wants. But what if those wants are like mine? What if she wants exactly what I always wanted — to bear her own children?

There it is. My biggest fear. That she will want to be just like me.

My plan is to teach her that families are made in different ways. There are so many children out there who need a loving home. Technology has come a long way, and who knows what will be available when she is ready to start a family.  I want her to know she will never be “less than” because of her karyotype. There are those who don’t even desire to have children, and live super happy, fulfilling, awesome lives without them. I will also tell her that any partner who has an issue with her medical issues is not worth her time, anyways. I want her to be confident, strong, and happy. I don’t want to see her hurt.

The torture is this. We have a diagnosis, but no prognosis. She is incredibly unique in her mosaicism. Sure, I know there are “maybes,” but nothing is definite. I have no idea what to expect, or how to help her. I don’t know anyone else who deals with this. I have no idea how to tell her the hard things. I have no idea how to do any of it, how to guide her through any of this.

When everyone is asleep, I lie awake, alone with my thoughts.

Reality sets in.

Without fail, the tears fall silently, every night.

My daytime bravado turns to wishes, which turn to pleas — begging any god to please spare my sweet, precious baby any future pain.

To magically grow another chromosome.

To hurt me instead of her.

It just doesn’t seem fair.

On the outside, I am strong. I have always been a good actress. I am happy, sarcastic, and fun. I crack jokes and am snarky as hell. I keep myself busy with volunteer work and preschool playdates. When people say “Oh, she’s so tiny!” I brush it off, or reply with a silly answer like “Yep, she’s a peanut!”  But it kills me inside. Not because the questions hurt me — they don’t. It kills me because they might someday hurt her. And that’s unfathomable.

My love for her is almost desperate. In wanting to shield her from any and all pain, I have become overprotective. The anxiousness has become the normal background of my days. All the time, I worry. I worry about her. I worry about my other kids. I worry I’m a terrible mother for worrying at all. I should be a better mom. I should be stronger. 

And then comes the unrelenting chorus of questions in my mind. Will she dislike me if I go through with surgery? I’d definitely dislike anyone who did that to me.  And someone tell me…how do you give your daughter a shot every day without feeling like a complete jerk? Will she be OK when her friends are pregnant, and that might not be a possibility for her? Will she be confused when she studies genetics and learns her karyotype? Will she give up in school because it might be difficult for her?

Even though my mind is filled with constant doubts, I know that all I can do is what I have been doing — be there for her, unequivocally and without wavering.

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