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Challenge: Kids with Special Needs

Dear Doctor

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Dear Doctor,

You are about to change my life. What you say and how you say it is going to have a huge impact on myself and my family. Everything will be different after today. I will now refer to things in terms of “before” and “after”.

Had you read my chart before you walked in this room, you would know that I’ve had recurrent miscarriages. You would know that I chose to forego genetic testing, because I wanted a stress free pregnancy. I was not interested in odds or statistics. I had 7 ultrasounds. None of them showed any abnormalities. We were completely unprepared for this. But here she is…our daughter. I just finished breastfeeding her. I am in love. I am elated. I am over the moon, because after losing so many babies, this one is here. I am in awe. She made it.

The dreams of my happy ending are about to be shattered. The nurse just told us her suspicions. You walk in the room. You examine my daughter. Your face is somber. You say, “I’m afraid the nurse’s suspicions are correct. I’m sorry to tell you that your daughter has Down syndrome. We won’t know for sure until we get the blood work back, but I am almost certain.” I am in shock. “What does that mean, Doctor?” I ask knowing next to nothing about Down syndrome. “Well, I’m afraid it means she will be delayed developmentally. She will hit milestones at a very slow pace. She won’t walk, talk, or crawl for a long time. We have to do an echocardiogram, because she may have a congenital heart defect. She’s more at risk for thyroid problems and leukemia. She will have low muscle tone. I know you have goals of breastfeeding, but that may not be possible” You lost me. Tears fill my eyes and I zone out. This can’t be happening.

Fast forward to today, 15 months later. I’d like to tell you about my life now. My daughter is talking. In fact, she is saying numerous words….Hi, Bye Bye, Mama, Dada, Ball, Up, and No. We are still breastfeeding after a bumpy start, but don’t underestimate the love and tenacity of a mother on a mission. Sienna is not walking or crawling yet, but did you know how many great resources are available to us? We just started PT at the Children’s Institute twice a week and we have been getting weekly PT at home through Early Intervention since Sienna was a baby. Sienna will get there when she is ready. She also sees a Developmental Therapist and a Nutritionist. The Nutritionist is helping us monitor her weight gain, because she does have a heart defect. It doesn’t seem quite as scary as it did initially. She will probably require surgery, but for now she is thriving. She gets blood work regularly and so far we have not encountered any abnormal numbers that would indicate thyroid issues or leukemia.

I don’t know if you know the power your words had over us when you delivered Sienna’s diagnosis. You didn’t need to be sorry. You also didn’t need to tell us everything that COULD go wrong. I wish you would have started with, “Congratulations.” When I look back on this moment when I asked you that fateful question, “What does that mean?” I want to tell myself, “It means nothing, Shannon. She is the same baby you were in love with 5 minutes ago. You will face challenges, but you will overcome them. You will become a fierce protector of this beautiful baby. You have so much to learn, but for now hold this precious baby and realize that it’s going to be okay. She is safe. She is healthy. Most importantly, she is yours. She is you and Jason. She is Haley’s sister. She is perfect.”


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