Dear Doctor

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 have 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 has 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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The Evolution of Happiness

If you would have asked me one year ago if I thought I would be celebrating Down syndrome Awareness Month with the ferocity and appreciation I have today, the answer would have been, “Hell no.” It’s amazing what can happen in a year. So much has changed, especially myself. For any mothers out there still struggling with the diagnosis, hang in there. Be patient and kind to yourself during your journey. I don’t know what the future holds, but I have learned to celebrate each day. Kids grow up way too fast. During Sienna’s first year of life, I chose to live in each moment. We conquered one challenge at a time and that way of thinking has translated into a higher quality of life for all of us. It’s a transition for which I am grateful.

As most of you know, last week I spoke with a group of students studying to become genetic counselors. One of the questions I was asked during their class was, “How have your dreams for your child’s future changed since her diagnosis?” It’s an insightful question and it forced me to dig deep. What dreams do I have for both of my kids and their future?

I thought about how I was feeling while I was pregnant with Sienna. It’s different with your second child. You already are aware of the sense of magic that comes with motherhood. You’re more selfless. You know the sacrifices you are going to have to make, and you’re prepared for them. Before Haley was born, I had dreams about her future. After she arrived, those dreams changed. They’re evolving every day based on what she wants out of life. The truth is her dreams belong to her, not me. All I want for her is happiness in life. I want her to do whatever it is that will bring her that. Whether she wants to be an astronaut, a makeup artist, a mom, an ice cream shop owner, or all of the above like she does now, I am going to give her the tools she needs in order to achieve those dreams.

Is that different for Sienna? I thought and thought on it, and I kept coming back to the same place. It is no different. Her dreams for the future will grow and change with each passing year and I will let her know that she is capable of doing anything. I will give her the tools to accomplish her dreams and I will stand on the sideline cheering her on, advocating for her all along the way. I will fight for both of my girls every day.

If you would have asked me 10 years ago if this is the direction I saw my life going, I would have laughed in your face. Would I be living in Pittsburgh? Ha, fat chance. Philadelphia is the best city in the world. Why would I leave here? Would I have quit my successful career in order to stay home and raise children? Ummmm, have we met before? I love working and I would never give that up. Would I be raising two girls, one with special needs? I can’t do that. I give people so much credit who can, but that’s not me. Also, I am going to be a boy mom. I’m a sports addict. I hate princesses. Well, here I am living this life we got (pun intended) and traveling this unexpected journey and guess what? I am happy. I am blessed. Being a mom to both of these girls enriches my life beyond my wildest dreams. One of my dreams in high school was to become a writer, and here I am pursuing a passion I had long displaced. My girls led me to this place and I am grateful to them for that.

Thank you for reading all of my posts on Facebook and Instagram this past month as we celebrated Down syndrome Awareness month. As we transition into November, I will be getting back to weekly blogging, still sharing stories about this life we got.

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Different is cool

I was having a hard time coming up with something to write today. One reason being I have had no time to think, let alone write. We hit the ground running this morning with school, aquatic therapy at the Children’s Institute, the grocery store and gymnastics.

In the midst of our crazy day, inspiration struck. During our appointment at the Children’s Institute, we encountered children working very hard to accomplish tasks that come easy to you and I. It was eye opening. Some of their disabilities were visibly obvious. I thought about what Haley would have said or thought had she been with us. Would she have asked me a question? How would I have addressed it? Would she have said something rude? Later, during this same day, we encountered a little boy who made a comment about the way Sienna looks to his mother. It’s the second time this little boy has said something. He obviously has questions. His mother covers his mouth and hushes him out the door. She doesn’t know what to do and she is embarrassed.

Here is what I want you to know. I get it. Your kid notices something different about my kid and your kid doesn’t have a filter cause he’s a kid. I am not offended. Let me help you. Don’t dismiss your kid. Don’t ignore them. Questions are good. Even if your kid says something negative about the way my kid looks, it’s okay. Ignoring it is not okay.

Teach your kids about differences. I like to tell Haley that God makes people in all different shapes and sizes. We are all special and everyone is beautiful. I explained Down syndrome to her by reading one of our favorite books, “47 Strings: Tessa’s Special Code”. I am happy to lend it to anyone. It explains chromosomes on a kid level. Haley still doesn’t completely understand, but we talk about it. We don’t ignore it. If you ignore something your kid is saying, you are teaching them that we can’t talk about it. You are teaching them that it makes you uncomfortable. Different is okay. In fact, we think different is pretty cool.

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