Why My Daughter's Dreams Make My Heart Ache


My daughter is 10 years old. She is completely boy crazy! She dreams about having a boyfriend, she dreams about getting married, she dreams about kissing a boy. She talks all the time along this theme. My husband and I are frequently reminding her that 10 is too young to consider having a boyfriend, never mind getting married! She even has a particular attachment to a boy at school. A boy she refers to as her “crush boy.” She has written him love notes. This is very typical of a 10-year-old girl.

Except my daughter is not typical. Clare has Williams syndrome (WS), a rare genetic deletion that causes, among other things, serious cardiac and vascular defects and developmental delays. Most individuals with WS have a hard time sustaining friendships, never mind being in romantic relationships. And getting married or raising a family? It is a lot of work keeping a marriage together and raising children on any person. I cannot even begin to imagine how a person with Williams syndrome would handle that.

If Clare had a child, that child would have a 50 percent chance of having Williams syndrome. I am finding it challenging raising a child with Williams syndrome. Sitting by her hospital bed after 14 surgeries. Holding her hand and soothing her anxiety during countless blood draws, injections, test, scans, doctors appointments. Coordinating physical therapy, speech therapy, occupational therapy. Carefully administering multiple medications a day. Planning IEP goals and tech evals and 1:1 aides. Oh my gosh — how could Clare ever cope with any of that??

There are many days when I struggle to cope with it all. Oh, sure, I read about those individuals with WS who are in the small percentage that are in relationships or even smaller percentage who have had a child, but I have to be realistic and know that will probably never be Clare.

This is the realization that makes a mother’s heart ache. I worry about her health and I stress over her progress in school. But my pain is in my heart that my little girl’s dreams are most likely only that: dreams. As parents to children with a disability or special needs, we can certainly shoot for the stars. We should expect great things from them and not let their limitations or other people’s opinions hold them back. But I believe we also need to be realistic. And the reality is that Clare will most likely never even live apart from us. That she will always struggle to maintain friendships. That we will probably outlive her.

And the real kicker to this mother’s heart is that Clare is smart enough to know she’s different, but not capable of doing anything to change it. There will come a time when she will watch other girls her age, and most likely her three younger sisters, go out on dates, get married, have children. And her heart’s desire will go unfulfilled. And she will be fully aware of that. That is my pain.

For now, I just let her dream. And I hold the pain quietly in my heart. Someday we will have to have the conversation. But not today. Today she gets to be 10 and boy crazy.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
,
JOIN THE CONVERSATION

Related to Williams Syndrome

If I Could Rewind the Clock, I Wish I Would Have Known This About My Daughter’s Diagnosis

In October 2012, I sat in a tiny examining room at the Children’s Hospital of Philadelphia. I listened to a geneticist tell my husband and me that my 2-year-old daughter has a rare genetic syndrome called Williams syndrome. I remember asking a battery of questions in rapid succession, a frequent coping mechanism of mine. I [...]

The Part of My Son's Condition That's Hard to Write About

This is hard to write about. Tonight, I walk the line. Tomorrow, I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance. I walk the line between complete acceptance of Evan’s Williams syndrome (WS), [...]

When We Got a Diagnosis I'd Never Even Heard Of

It’s funny how two words can be everything. Williams syndrome. I’d never heard of it. I left the specialist’s office with a list from a dated textbook filled with complex medical descriptions but not sure how serious Luke’s case was. I remember sitting in the car with the realization that the news we were given was real [...]

When Taylor Swift Visited a Children's Hospital, the Most Adorable Duet Broke Out

Taylor Swift gets a lot of press for who she dates, but we think she deserves some attention for who she visits. This week, for example, she took a trip to Boston Children’s Hospital, and she didn’t just take a few pictures with patients and head out — she stuck around. That generosity gave us [...]