While I was reading some of the blogs on here about new WHS parents, I was at a loss at what to write to them about getting the diagnosis. Those days seem like decades ago even though it has only been two years. I decided to look through my old journals and found one of my entries that quickly brought me back to that overwhelming feeling of a new WHS parent. Here it is…

After being the only girl in the house for eight years, I was ecstatic to learn that this child I was carrying was a girl. The ultrasound technician assured us that it was a girl. But after twenty minutes of her not saying anything and still looking for something, we knew there was something wrong.
“She doesn’t know what she is seeing. She’s new, that’s all,” I calmly spoke to my husband as she left the room to get her supervisor. But it was more than that. After many more ultrasounds and meetings and doctors’ visits and specialists’ visits and geneticists’ visits, they all concluded that it was a “syndrome.”
But we dreamed and imagined and pretended anyway. We grasped an imaginary ribbon of hope and planned for the birth of a healthy, vibrant, smiling princess.
Needles to say, we were shocked at the difference between having a healthy child and a child with special needs. For the first six weeks, Amelia spent her life in the NICU. During week two, she developed a virus and no one knew why or how to help her.
“We just have to see if she gets better.” And if not? The answer was to clear to them but never an option to us. And this has been how we have treated her syndrome.

When a specialist says things like, “If she ever walks or talks or smiles…” And sometimes I quietly correct them and say, “When she walks and talks and smiles..” And sometimes I weep at their honesty and sometimes I scream because of their arrogance. But she will. She will accomplish everything someone who does not have a syndrome accomplishes. But Amelia will do it when she is ready, not when the charts, and graphs, and books say it is time.
She recently received her first occupational therapy report and I sobbed when I read it alone in my living room. The line read, “Potential for Improvement: Fair.” I couldn’t get passed that line and didn’t care what the rest of the report said. I knew that tiny X in the box pushed against everything inside my soul. Checking it seemed almost an afterthought for the therapist. But it was there in black and white, on paper, dripping off the bottom like a piece of her future was hanging in limbo. How could she improve if they didn’t believe she could do better? At six months old, how could they predict “Fair“?
I believe everyone should have “excellent” marked off in their box for potential for improvement. Even if it as simple as grasping a toy. We all have the potential to improve our lives as long as somebody believes in us.

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7 Responses to I Believe…

  1. Laurie says:

    What an amazing post. I STILL have days when I wake up and question what Kaylee’s future holds for her. I STILL have difficulty accepting what the research and geneticist told me to expect from her and trying to reconcile it fairly with what I HOPE she will become. Reading this has reminded me that I need to let go of my expectations for when she will accomplish those milestones and just have faith that she will reach them in her own time– regardless of when. xo

  2. cordillh says:

    Chrissy- Well said! As a pediatric OT and now a parent of a child with special needs, I can see so many mistakes I made as a therapist and wish I could take so many of them back. Being on this side of things has completely changed my perspective on everything. I am trying to meet with the therapists at the clinic I used to work at and now where Riley receives therapy and give them my side of the story. I think therapists and doctors could learn so much if they took the time to see what it is like from our perspective.

    I am so glad that Amelia and all of our little ones have strong, faithful parents to fight the good fight for them. There are no limitations to what they can achieve.

  3. kerin says:

    I believe all children have the potential for greatness…and my heart breaks for you that someone could/would stifle your hopes for her. I much respect and love for you both. God gave her to you for a reason- he knew she was special and needed a strong loving family to raise her.

  4. LeeAnn says:

    Thank you for reaching out to us new WHS parents this way and sharing that piece of your history, I’ve read all your other posts on here now too and each one moved me more than the last….really appreciate your perspective and attitude. Amelia is so beautiful and I can see it all over the pics-she is so happy and loved. That report you got when Amelia was 6 mo. old went against everything I know in my soul to be true too. That is not right. Unbelievable, I can’t even imagine the roller coaster of emotions you experienced after reading those few short words that therapist was so cavalier to write. Not right. Briefly I have to share with you Brodie’s chiropractor’s story, they have a daughter now in her 20’s who was born with the left and right hemispheres of her brain barely connected, they told her parents she would never walk or talk or smile. They refused to believe and believed so much in their little girl she now walks and talks and smiles and even has a job! She is doing great! Her story inspires me so much. I know Amelia will be EVERYTHING you believe she will be! Keep the faith and keep posting! -Brodie’s Mom

  5. Hilary says:

    Thank you so much for this post! You have no idea how much your post and others like this have helped us. I’m continually thankful that we are in a time where the internet is available. I can’t imagine facing this without such an amazing network of people to help guide us and share in this journey. Our journey is about to begin and I know I will be relying on those friends and family close to us, but also just as much on those parents of wonderful children with WHS. I look forward to getting to know each of you and your precious families! Thanks for taking a trip back to the early days. I appreciate it!

  6. Fabiola says:

    It’s a wonderful post. The doctor can say many things, they usually they expect the worst, but these children are fighters. And what they give us, their smile, and their happiness worth everything. My daughter Domenica has 4 p syndrome, she is 5 years now. Actually, she was the first case that the doctors have seen in Ecuador. The first two years was very difficult with the seizures, once she almost die. We try valproic acid, it help but we try with leviacetan (kopodex) and the seizures stops. Its magical, it works with domenica. I told the doctor to write about it, maybe it help somebody else.

  7. shirley bidnick says:

    You’re so feisty. I hope you never lose your fire and fight. Parents in my age group were among the first ones to refuse to institutionalize their children with developmental disabilities, and insist they attend regular schools. We fought hard but many got burned out and discouraged. We made compromises, and did not push hard enough for inclusion at the secondary and post secondary level. When our children graduated we did not have the energy to push for inclusive workplaces. Some accepted group home life instead of supported independent living. When I read your posts, it renews my hope that your generation of young parents and families will carry society to full inclusion and belonging. Stay strong. Fuel your fire. Keep fighting.

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