Caring for Carter – by Krystal R.B. Lester

Diagnosed by Mom…
Carter was born ten days after my 42nd birthday and two weeks before his due date.  I had a feeling he was going to come that weekend because I had been telling the baby, as we did not know the sex of our child, that we didn’t have any plans that weekend.  So, if he or she wanted to come out the first weekend of June that would be just fine.  The baby having a mind of its own and already listening to mommy, did just that.

My husband went to work on Friday morning, June 1, 2012 after I had been having contractions every hour throughout the night.  I seriously thought it was no big deal since it was two weeks early and my first two boys had to be induced. My husband works out of town driving a semi truck to other parts of the state.  About two hours after I sent him on his way, I called him back.  I couldn’t drive myself in to town by that point; the contractions were too intense.  Carter Thomas Lester was born (with no name because we had not settled on a boy’s name) about 20 minutes after we arrived at the hospital.

My doctor does not believe in putting the baby on your belly after birth (which broke my heart), so they rushed the boy over to the little nursery area in my room and started working on him.  I asked them three times what was wrong with him, and the only answer they would give me is that he was not “pinking” up like they would like to see.  I could barely see him, but I could tell he was a little grey in color.  It was driving me nuts. I couldn’t move, my husband was glued to my side, and I had not seen my baby’s face yet.  They made the decision to take him from the room to put oxygen on him in the nursery.  This of course didn’t make me happy, because I wanted the bonding to start. I wanted to nurse and hold my baby.  The nurse brought him over to me and said, “Give him a kiss mom, and we will have him back soon.”  I turned to look into his sweet face and kiss him….I was in LOVE.  Right after I kissed him, I turned to my husband and said, “He has Down syndrome.”  My husband was on the phone with his mom and got off immediately saying to me, “How do you know?  Did they tell you?  What do you mean?”  He was very confused as was I, because no one would say anything to us.

I could feel the vibe in the room begin to change.  My OBGYN kept saying, “Oh, lots of babies are born funny looking, he doesn’t have Down syndrome.”  This made me angry, because why would anyone avoid the subject?  The nurses knew they had to say something to me before the pediatrician got there.  They all seemed uneducated about Down syndrome, and the room turned to gloom for a little bit as the nurse tried to explain what our next steps were going to be, like it was a sad thing.  I had a hard time understanding that.  There was nothing wrong with him.  He had a few heart issues in the beginning and some ear trouble that tubes corrected.

I could have cared less that he was born with Down syndrome, I was elated to see my baby, and he was perfect.  Was there a part of me that was sad at the loss of a “typical” child? Yes, of course.  I wouldn’t be human if I wasn’t.  I have a tendency to get sad when he is not making developmental progress like his peers, such as talking and walking.  Then I remind myself how lucky I am that he is so healthy, growing, and developing normally.  He just does it at a slower pace than his peers, which just means that I get to keep my baby longer than everyone else.

We had chosen not to do any genetic testing while pregnant because it would not have mattered.  I have worked with two kids with Down syndrome since 2006.  So, I think when I saw Carter I could tell by his facial features immediately.  And that’s how Carter was diagnosed by his mom.  Not a single test was run on his genetics before or after birth.

Why We CELEBRATE Down syndrome…
Even though I have worked with kids with Down syndrome for several years, it isn’t the same as having your own child with the genetic disorder.  No matter how much compassion you have, there is no comparison.  We just learned of World Down Syndrome Day last year on Facebook.  I ,of course, was on board right away and put up flyers all over the school where I work.  We didn’t get a lot of response because it was kind of short notice.  This year, the flyers went up early at our school and I am hoping for some crazy sock action!  To me and my family, every day is a day to celebrate Carter and all other individuals born with trisomy 21.  It makes them different yet the same as all of us.

How I Make a Difference…
I think the only thing I do that may be making a difference is by trying to bring awareness to people who don’t understand Down syndrome.  No one ever asks me if Carter has Down syndrome or even talks about it for that matter.  It seems taboo.  I want people to know that I will talk about it all day long.  I feel so blessed to have such an amazing individual to raise.

My Carter…
There are so many things about Carter I love and there really isn’t anything I don’t like.  He has figured out how to make us laugh, and he loves to laugh himself.  His giggle is so contagious there is no way you can stop yourself from laughing when he giggles or laughs.  He has just recently learned how to say, “I love you” and he tells us often without prompting.  He may not know what it means yet, but it melts my heart every time.  I think he knows that.  Everywhere we go, he gets tons of attention and he hams it up!  He is very rarely upset.  If he does get upset, it is usually because he is tired.  He is so incredibly sweet.

What I Want to Share…
We were confused, scared, and sad just like any other parents would be at first. My husband was probably a little more upset than me when we noticed the Down syndrome, because he had never been around anyone with Down syndrome.  I had.

Carter has two older brothers by my previous marriage.  Tanner is 17, and Jakob is 15.  They are the most incredible brothers anyone could ever have, and Carter is so lucky to have them.  He is so in love with them.  They literally fight over him; who is going to hold him, who will get him up from his nap, and who will get to him first when they come home from their Dad’s house.  They have such an unconditional, unselfconscious love for him.  I have never seen such love.  I often think to myself what great Daddies’ they will be!

In the 21 months Carter has been with us we have been very educated, and we are enjoying every step of our journey.  We have learned so much about ourselves, Carter, and people with and without Down syndrome.