Life's Journey with Down Syndrome

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 Daniels Story

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Number of posts : 1509
Age : 50
Registration date : 2009-01-28

PostSubject: Daniels Story   Fri Jan 30, 2009 10:27 am

I wrote this when he was 14 months old (that's why it says that at the end)...he's now 3 and 1/2......he'll be 4 in June. If you all have the book Chicken Soup for the Soul....children with special needs'll see Daniel mentioned by Emily Kingsley in the forward of the book. Mary C lives in the same town...told Emily about his name....and she decided to write about it in the forward she wrote in the book. So, if you have the book...take a peek...cause it's my Daniel she's talking about Smile

His Name

It was a beautiful warm night in June and my husband and I were sitting on our outdoor swing. We were expecting our second child any day. We knew he was going to be a boy, but we just couldn’t decide on a name. My husbands name is Daniel and we also loved the name Nicholas. We just couldn’t decide on both a first and middle name. We both said to each other “Let’s just wait until we meet him.” Those very words would come to have such meaning a few hours later.

My son arrived the following morning via c-section. My husband showed me our son and my first thought was he looked so much like my older daughter. He was a gorgeous baby with a full head of dark hair and beautiful eyes like my husbands.

A few moments after my surgery was over, my doctor came to see me in recovery. Walking in behind him was my mother, father and my husband. My doctor said congratulations and he thought my son was beautiful and assured me he was doing very well. He next words were something I never dreamed I would hear, ”We strongly suspect your son has Down syndrome.” I remember I kept waking up in recovery and looking around the cold sterile room. My husband was by my side and I kept asking him “Did the doctor just come in here and tell us the baby has Down syndrome?” He said I asked him at least 10 times. I kept thinking it was a dream.

Those first few hours seemed like years. I guess our minds can only handle so much hurt, anger, sadness and guilt at once. My mind was filled with questions like “Why did we wait so long to have children?” What did I do so wrong to deserve this?” “Why my little boy?” His name was the furthest thing from our minds.

They finally wheeled me into my own room. My son was doing very well but needed a bit of oxygen so he was in the nursery. The nurses kept asking us if we had named him. I was embarrassed to keep telling them no, but my thoughts were so scattered and my heart was breaking.

During the first few hours, I thought my life, as I knew it was over. I remember thinking we wouldn’t be able to go on vacation or have fun. I didn’t think we had the strength to handle this. I imagined my son wouldn’t know us, or communicate with us. That he would be in his own world without ever learning to read or write. I imagined him in elementary school sitting alone in the playground with no friends. I felt overwhelmed and all I wanted to do was run away.

I thought about my husband a lot in those first few hours. I felt I let him down. He is an amazing husband and loving father to our daughter. I had dreamed of all the things he would do with his son. I was so sad inside, so disappointed, and so hopeless. My husband was a college basketball player with shelves of awards and trophies. I thought our son would follow in his footsteps. My husband said we would be proud of him no matter what he achieved, because he was our son. I knew we loved and wanted our son more than anything, but we were both afraid of what the future for our precious boy held.

Just a few hours later, I received a visit from a nurse that changed everything. I had never seen her before, and we never got a chance to see her again. We can’t even remember her name; my husband and I just call her our angel. Her visit was one that we will never forget. She had heard that my son was born with Down syndrome and asked if she could visit with us. I was a bit ashamed to have a visitor as my eyes were swollen with tears, my hair was a mess and I felt awful inside. I had kept the shades closed; it was dark and dreary in my room, just like my mood. She came in and gave me a hug and sat down with us. She was a very pretty woman with blonde hair and blue eyes. She had a sense of happiness and warmth about her. She sat next to me on my bed, she held my hand and most of all, she listened. Her eyes were filled with understanding, something that I really needed at this point. She spoke with confidence, like she knew something I didn’t. Her face was so kind, her words so calming and gentle. And in that very instance, she opened the shades and let the bright sunlight in.

She then gave us the poem called Welcome to Holland. She explained how she had 2 boys, and her youngest son had autism. So she herself was raising a child with special needs. She told me how proud her and her husband were of her son. How his brother adored him and how happy he is. She said she was further into her journey than I was, but she knew we would be ok. The look on her face and sparkle in her eye let me know that we were going to be ok; in fact, we were going to be fantastic. She told me to give myself some time, to realize that my baby was a blessing no matter how many chromosomes he had. She said life holds no guarantees and we can’t predict the future for our typical children, or those with special needs. She said it’s hard at first, but you come to realize that yes, things are different, but different doesn’t mean unhappy or sad, just different. She assured me we would go on all those family vacations we had planned. She said we would be happy and enjoy our lives with our son and daughter. The look on her face is what I remember most. It was the look of understanding. She knew how I felt; she reached out her hand to mine and with that kind gesture, changed our lives and our outlook forever.

The poem she gave us called “Welcome to Holland” just touched our soul. When the nurse left, my husband and I turned to each other and both at the exact same time thought “Holland” would be a wonderful middle name for our son. So we called the records department and made it official. Finally, our son had his name. Daniel Holland.

Daniel is now a bright, energetic 14-month-old little boy. He has already been on several vacations and loves to travel. His big sister and his entire extended family adores him. He is quite a little charmer, wherever we go he smiles and claps for everyone. Our nurse was so right, life returned to normal and we are happier than we ever dreamed. Daniel has enhanced all of our lives in so many ways. We have met wonderful people that otherwise we would have never met and also discovered new and exciting places. We thank God everyday for our nurse reaching out her hand to ours and welcoming us into Holland.
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PostSubject: Re: Daniels Story   Fri Jan 30, 2009 11:52 am

Beautiful story!
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Age : 48
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PostSubject: Re: Daniels Story   Fri Jan 30, 2009 8:16 pm

That was beautiful! You have a gift for storytelling, and a very touching story to tell. Smile
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David's Mom

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Age : 46
Registration date : 2009-01-30

PostSubject: Re: Daniels Story   Sun Feb 01, 2009 9:16 pm

I loved reading your story! Thanks for sharing...
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PostSubject: Re: Daniels Story   Sat Feb 07, 2009 12:10 am

Wow, love how you picked his name. Great story.
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Age : 47
Humor : lowbrow, juvenile, scattalogical, slapstick ;)
Registration date : 2009-01-26

PostSubject: Re: Daniels Story   Tue Feb 10, 2009 9:04 pm

I've read most of your story before, but it's still very touching. Thanks for sharing it!

Mom to Oliver, 7 (DS, ADHD)
and Sebastian, 6
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Age : 53
Registration date : 2009-01-29

PostSubject: Re: Daniels Story   Wed Feb 11, 2009 10:12 pm

Very beautiful! Thank you for sharing that lovely story! I see that God gave you Daniel, and He gifted me with Nicholas! Very Happy
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