Tuesday, February 19, 2013


Well, I guess now that have a blog, this makes me a full blown housewife.  I don't plan on blogging just about Down syndrome; I plan to write about funny things too.  However, I feel like I need to start here....

October 15, 2012.

That was the day my son was born.  It was that day that my life took a very unexpected turn.  My pregnancy was normal, everything was "great," my ultra sound looked fine, his heartbeat sounded great, nothing out of the ordinary.  My water broke at 2:30 in the morning and we left for the hospital three hours later.  The delivery was quick and soon I was holding my beautiful baby boy.  He was smaller than his sister was, weighing in at 7 lbs. 3 ozs. Before I knew it, I was being wheeled off to my postpartum room and my little boy we named Carl, was wheeled off to the nursery to be examined and stabilize his body temperature.

As my husband and waited for our little guy to return, we were beaming.  We brought another little healthy human being into the world and then....

Next thing we knew a strange doctor walked into my room and quickly introduced himself.  He started by saying, "your son is looking healthy, but...". "But what?" my husband and I said at once as my body went numb.  He went on to explain that our son was showing a number of signs that he has Down syndrome.  His muscle tone was low, his eyes looked slanted, there was a fat patch on the back of his neck and a large gap between his big toe, all hallmark signs.  I looked at my husband, he was kneeling on the side of my bed with his face buried in his hands.  Then it hit me, guilt, it was my job to carry this baby into the world healthy, happy, and perfect.  I must have done something wrong.  The tears started as I asked the doctor if I did this.  He assured me, no, Down syndrome is something that just happens and is out of anyone's control.  My husband then looked at him and told him to get our son.

My little guy was finally wheeled back to us after what seemed like forever as I sobbed hysterically in my husbands arms.  He looked perfect, we thought how could this be possible? Over the next few hours we tried to wrap our brain around all this. What would this mean for our son? For us? Our future? His future? Could I handle this? Could I really handle a child with special needs? Why us? Why him?

I slowly started telling family and close friends the news.  Our family, like us, were devastated.  We all clung to the hope that there was a small chance the doctors were wrong.  None of the pediatricians that examined our son could make a definite diagnosis, we would have to wait for the genetic test.

In the meantime, we were assigned a social worker to help us cope.  Not only were we dealing this news, but we were still grieving the loss of my father-in-law who passed away just three weeks before the birth from cancer.  It was all too much.  We were once again mourning, mourning the loss of the little boy we thought we going have.

Day two and we hit rock bottom.  The cardiologist was worried about a valve in his heart and wanted to transfer him to a children's hospital for monitoring.  If the valve was to start narrowing more, surgery would be needed.  Suddenly the Down syndrome didn't seem that big of a deal, we just wanted our little boy to be healthy.  Our son was transferred to the Children's Hospital of Philadelphia (CHOP) by ambulance.  I demanded to be discharged early, there was no way my son was leaving without me.  The transfer team loaded our baby into the transfer crib that looked like an incubator and we were wheeled out together.  My husband and I sobbed as we drove behind the ambulance, it was awful, just heart-wrenching awful.

Day three and my son needed an IV put into a vain in his head.  It killed me to see my little guy all hooked up to monitors and tubes.  However, that day we finally got good news, his heart was ok.  We would end up staying at the hospital for another four days.  My husband stayed with him every night while I went home to take care of our daughter.

Something happened at CHOP that was nothing short of divine intervention.  The second day we were there my sister-in-law and I got into the elevator and headed up to the room.  The elevator stopped and in walked a little girl, who looked to be about ten, and her mother.  The girl looked right at me and asked why I was here.  I thought that was so sweet, how many kids would think to ask that? I told her my baby boy was here and they were worried about his heart.  She said she hoped he would get better and walked off the elevator.  I wanted to hug her so badly. We went up to the next floor and got off, tears were streaming down my face. My sister-in-law looked at me and said, "you know she had Down syndrome," I knew that. It was then I realized it was going to be OK, I could do this.

A few days later, it was confirmed, our son did indeed have Down syndrome.  We were pulled into a tiny room with tissues on each end table.  In the days leading up to this, I had come to accept the fact that my son had Down syndrome.  A few of the nurses and doctors at CHOP made a few comments to us that our son did not "look" like a child with Ds.  Those comments gave my husband and I some false hope, but deep down, I knew.  Still, the emotions started all over again once it was confirmed.  We held each other and cried, then my husband said, "lets go see our son." We dried our eyes and walked out hand in hand.  I remember walking back to our son thinking, that's it, no more tears, we're just going to love our little man so much.

We're now four months into this journey and I wish I knew then what I know now.  I now know an extra chromosome isn't that big of a deal.  My son is AMAZING!  As of now he is NOT developmentaly delayed at all.  Someone said to us shortly after the birth that the fears are greater, but the highs are higher.  It is so true. 


  1. Great first entry to a blog I am going to be glued to. Keep 'em coming!

  2. Sara, this is great! I am excited to follow along with you on this journey. I can't wait to meet you in person one day, I know we will :).

  3. What a ride! I'm so glad you're blogging though and looking forward on traveling this rode with you:)

  4. Thanks! My son was just diagnosed 3 days ago.... I really needed to hear/ read this!

    1. I promise the shock wears off and you'll fall more and more in love to the point you won't even care about the diagnosis. Hang in there!

  5. Sara, thank you so much for sharing this! It is so touching to read about your journey! Love y'all! -Katherine

  6. Sara, I love that you are doing this! I learned so much just by reading your first entry. I think it's wonderful that you're putting your story out there for others to see. I'm certain it will touch many people in need of the courage you and Carl have!

  7. Sara, this was a beautiful post! Thank you for sharing your emotions so honestly. Sending my love to you & your family from California. (this is Kristen Kolada :)

  8. Sara,We have never met but my son and I know Carl. My son does not have ds but is special needs. Jakob thinks Carl is the best. I cried reading your posts and I sobbed when we went to tell Carl goodbye at Toyota. As I told him not everyone one is kind to our children and he was always so kind to Jakob. You are so blessed in so many ways. Having a special needs child will have hard times but you will cherish everything Carl does. He will bring you unending love and joy. My son will be 30 in March and still lives at home and I wouldn't have it any other way. Our children's love is endless and baby Carl is so precious:) Of course Sophia is just beautiful and don't worry her sassy side will go away. I hope that someday we can meet. Baby Carl is so lucky to have such loving parents. I feel that I am the lucky on that God chose to be my son's mother. Prayers and love your way. Jaye