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Dear Down Syndrome

on March 21, 2015

Dear Down Syndrome,

You snuck into our lives quietly alongside of several scary diagnosis our baby girl received. We knew nothing about you except that surgery could not “fix” you. For this reason, we feared you the most. 

 

 We began to research what you would mean for our daughter’s life and became even more frightened. The research said many things would be difficult for her and she may not even achieve many milestones like walking and talking. We feared our daughter would not be loved or accepted. Down Syndrome, you caused us to grieve the child we had dreamed of having. She was meant to be perfect with brunette pigtails in a twirly dress dancing in a field of flowers. Her smile would be radiant and her laugh infectious. You, Down Syndrome stole that dream from us. 

We were angry for a little while, but not too long. Soon we learned to cherish things we could not have dreamed of that you brought as a gift. The first was her little feet and separated toes. Oh, how we loved to paint her little toe nails! The second was her low muscle tone in those early days of a long NICU stay and how it made her little body snuggle into the crook of our arms like a newborn for a little longer than her twin’s did. Third came her tolerance for pain. It sounds strange to say this one, but she needed it to endure all of the surgeries that came with the other diagnosis. 

Do you remember the radiant smile and infectious laugh we dreamed she would have? It was better than we had imagined. Pure love flowed from her in a way that made thousands of strangers fall in love with her. 

 

 Down Syndrome, soon you became our least feared diagnosis as our sweet girl battled illnesses and infections brought on by the others. We began to embrace you and saw a new dream for our child that was so similar to the first. Only now that dream was for her happiness not ours.   We learned that hitting a milestone late or not at all did not steal her joy. So, why should we allow it to steal ours? We watched as she smiled through the trials and loved through the pain. Soon, we learned to do the same. We discovered that happiness can be found in every moment, even the most painful ones. 

On February 18th, another of the diagnosis took our sweet girl home to Heaven. We miss her terribly. We miss everything about her including you, Down Syndrome. Thank you for the gifts we received through your presence in our daughter’s life.  

 You are no longer something that we fear and hope to help others embrace you as well.

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12 responses to “Dear Down Syndrome

  1. Melanie says:

    God bless you all. So precious. xoxoxoxoxxo

  2. Lauren says:

    God Bless your family. I am so very sorry for the loss of your previous angel Audrey. I just bumbled across your blog in my facebook feed and now I’m sitting here bawling… such a beautiful little princess I cannot imagine your pain. I hope knowing you will see her again someday can be some small comfort.
    I had my 22 yr old son when I was young ( and dumb) then my 9 yr old daughter in a bad marriage so when my younger sister suffered loss after loss in her happy marriage I felt such guilt at the ease of my fertility. Now thank God she has 3 healthy munchkins but she still cries for those she too will see again one day. When I hear stories like yours I can’t help feeling that guilt again.
    I don’t know why I’m telling you all of this?? I guess I’m just trying to explain that all those mom’s that have pregnancy so easy want you to know their hearts hurt for you…
    Now fast forward to today. My son is a successful adult college grad, my daughter is a typical 4th header and I’m engaged to the best guy… but we are in our 40s and he’s never had but always wanted children. We have talked about the risks.. the biggest one being downs. His reply is “so?” I’m completely pro life… so I could only smile. I don’t know if we will be blessed with a baby at all but either way it’s in God’s hands.
    Thank you for sharing your story and that of your gorgeous girl.

  3. Lauren says:

    I’m sorry that should say precious! Not previous angel!

  4. Marie Prom says:

    Your little girl is beautiful,so loveable and precious. You are great parents, we can tell you loved her much and now she is in heaven were she will get a spot for you with Jesus.

  5. The pics you posted were so precious she was a doll. Prayers for you all that you find peace in your lost but know that she will be greeting you in heaven someday and be whole and still beautiful!!!

  6. Theresa Moore says:

    You have eloquently and beautifully explained something I was not able to understand until just now. Each time “the gift” of Down’s Syndrome was mentioned, my mind screamed “does not compute”.. How can something like this ever be considered a “gift”? Audrey opened my heart. You have opened my mind. Thank you.

  7. Janna says:

    We think of you guys all the time. Thank you for sharing your story with us all.

  8. gsoulen51 says:

    I have searched my heart and the scriptures to find something of comfort to say, but alas my mind strays. Your heart is heavy, your life amiss, you feel like emotions are in a deep abyss. But remember this, God is love, He will lift you up like a dove. Your child is safe in God’s everlasting grace. Put you trust in HIs embrace.

  9. Meg Delo says:

    I can just picture her dancing and twirling her full skirt in that field of heavenly flowers! She is fine now….healed and blessed in every way and not in pain anymore! I will never be easy for you, but when you get there, you will spot her immediately………..the “twirly girly” in the meadow with the sun shining on her face and her laughter ringing throughout heaven!

  10. Evelyn Mitchell says:

    Said a prayer in Jesus name. That was beautiful. Thanks so much for sharing.

  11. Jessica says:

    Hi! I read your post and wanted to thank you for sharing. I lost my beautiful baby boy 4 weeks after he was born this last october. He was born prematurely with a heart defect and hydrops due to his down syndrome. I still miss him terribly, but just like you, I KNOW he is in heaven and that gives me comfort. I can picture him playing and laughing with your little girl up there! thanks for having the courage to talk about the hardest thing we can go through as parents. And for keeping the faith alive! God bless you and your beautiful family.

  12. Alicia Growney says:

    I learned of your beautiful Audrey just before she was born into Eternal Life. I kept reading your blog over and over again, weeping, because I couldn’t comprehend why this precious angel was fighting for her life. My Grace has Down Syndrome and is just a few months older than Audrey. When I look at your Cricket, I see my Grace and feel blessed and relieved that her struggles paled in comparison to Audrey’s. But that is quickly overshadowed by overwhelming guilt knowing what you and Audrey had to endure. I couldn’t imagine my life without my Grace, that is your reality.

    You so eloquently wrote that letter to Down Syndrome and expressed the emotional journey we take as parents. My Mom, who passed away one month after Grace was born, knew what a blessing she would be. She had volunteered at our church working with children with special needs and had a certain fondness for those with Down Syndrome. Growing up she would always say, “If everyone in the world had the personality of an individual with Down Syndrome, we would live in a world free of war and hatred.” I remember getting so mad at her while I was pregnant because she said “It was wonderful that I was having a baby with Down Syndrome”. I now know what she meant and what treasures these children are.

    I am saddened that her time with Grace was stolen from her, she only held her once because of cancer. I am reassured knowing she is with your Cricket. And although I know this does little to ease your pain, your Audrey is with a wonderful woman in heaven who was so proud to tell everyone she was going to have a granddaughter with Down Syndrome. God bless you.

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