Slow and Steady


Emmy’s progress has been slow and steady. I had this image of the doctors removing the ventilator and Emmy jumping into my lap and saying, “Hi Mom!” It hasn’t been like that. It’s been much, much slower. But we’re moving in the right direction.

When Emmy was first diagnosed, I thought a lot about the developmental issues she would face. I thought about schoolwork and bullying and driving and independent living. I didn’t focus on the medical aspect of Williams syndrome. It seemed more distant. I could easily understand schoolwork and bullying. I couldn’t wrap my head around cardiovascular issues and hypercalcemia.

What has happened over the past few weeks has made the medical issues very real in my mind.

Just last night, our tight-knit Williams syndrome community lost a beautiful 3 year old boy who had heart surgery on May 23. I am heartbroken for that family. It physically hurts.

People with Williams syndrome have a special smile. I see that little boy’s smile in my mind, and it will stay with me forever.




14 thoughts on “Slow and Steady

  1. I am sorry about the little boy that was lost. I can’t imagine how hard it must be for the family, now and in the days to come. I think of you a lot and imagine the torture you feel at the slowness it takes for Emmy to get better, and am happy that she is little by little getting better. And despite that, how it must be so hard not to worry. I remember the friend who wrote that their little one was in the hospital for 5 months and certainly hope Emmy will be home way before then. I have to admire you and Dan for the strength and courage you both (and I imagine Charlotte too) are showing during this time in your lives. So I am sending some hugs again for all of you and congrats on your 7th anniversary!!

  2. I know it’s slow progress and its frustrating but Emmy is getting stronger everyday:) Can’t wait to see her smiling face come through that door at Kinderprep. We’re all rooting for you Emmy. Go Emmy Go !!!!

  3. There is a plan for Miss Emmy. She is teaching all of you every day. Remember how small she is and think how hard that heart procedure must have been on her tiny body. It all takes a toll and she needs time. Try not to rush it, as we all know…good things come to those who wait.\I am so deeply saddened by the loss of the little 3 year old. Bless them all. Just try not to pile all those issues into one big mountain and try and fix them at once. You can’t. Life gives you lessons every day. Take a couple at a time and work on them. Everyone around you needs love and support including you, so remember to hold them close and take care.
    My daughter Regan was born in 1975 when I was 25 years old. We were told she had Down Syndrome and we could either leave her at the hospital or take her home and love her for as long as we had her. She is the light of our lives, is turning 39 this summer and works at our local grocery store and is like the mayor of New Hope, PA where we live. She teaches us every day. We are blessed. Don’t focus on the future and what issues there will be. Just leave it in the hands of the Universe and love her. And take care of yourself as well.

  4. We think of Emmy and your family every day and are thrilled to hear she is making such great progress. We are also heartbroken for Carter’s family. Thanks for the update – you are in our prayers.

  5. Hi there. My son, Henry, is 9 months old. He has svas as well as severe pulmonary stenosis. Right now surgery is not an option and the drs want to see him in 3 more months.
    Sometimes, I can’t figure out what I more terrified of…him having surgery or the waiting for the green light.
    Anyway, thank you for sharing your story…we are a small group living with this and it is important to know we are not alone.
    My prayers for Emmy, she is beautiful and so strong!

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