Up Syndrome: an unexpected blessing

Truth: Life never gives you what you expect. Sometimes it ends up being better than you could ever imagine.

Such is the case with our lives right now. Exactly one month ago, on October 20 at 5:10 pm, the sweetest spirit entered this world. Leo (hereafter known as Mr. L) gave us the surprise of our lives by not only coming 10 days early (my older two children were born after my due date), but arriving with one blessed chromosome more than normal. Mr. L was born with down syndrome.

Up Syndrome: an unexpected blessing by Sewing Blue

A few quick details about his labor first: I had no clue I was going into labor that day. I thought I was having “painful Braxton Hicks.” I planned to use this time to finish a lot of sewing projects before Mr. L came. As I was cutting out fabric, I had to keep stopping to deal with these pains that weren’t going away. Oh how I wish they’d just leave me alone and let me work! Well, they kept getting closer and more painful, and it finally dawned on me that may be this was the real thing. 

A hidden blessing is that we are living with my family right now while our house gets built. This was perfect, as I started having contractions while my husband was at work, so my mother was able to drive me to the birth center (I’m one of those crazies who gives birth naturally with midwives. Try it out! EUPHORIA!). I didn’t really let my hubby know I was going into labor until we were driving to the birth center since I didn’t believe it myself. I probably should have let him know how serious it was, since Mr. L was born with one single push just 20 minutes after we arrived at the birth center. My husband didn’t even get to the birth center until a few minutes after his birth! Whoops!

Up Syndrome: an unexpected blessing by Sewing Blue

I’ve never had genetic screening done during any of my three pregnancies. Other families are born with children with disabilities, that would never happen to us, right? So why bother testing? I need to stop having these silly thoughts. Apparently I fit into the category of “those people” – this became obvious when my last baby was born in a car! (now that’s a story. I’ll have to share it sometime. 😉) So to say that finding out our baby has down syndrome was a shock is putting it mildly. Even still, I knew something was different about this baby early on in the pregnancy.

I never felt a real connection with Mr. L when he was in my belly. I was aware that I was pregnant, but it was more like a physical condition for me than a bonding experience with my future child. The minute he was born, he was placed into my arms, and that disconnect was still there. Holding him was so alien to me. How do I hold a baby again? Where do I put my hands? I’m not ready for this yet! Wait… his eyes look different. I know that look. Is that… down syndrome?

I remember the conversation with the midwives. “We think your baby might have down syndrome.” Notice the slanted eyes, the extra fold on the back of the neck, the simian crease on his hand, the gap between his big toe and the other toes. I was still recovering from the fact that my baby came so unexpectedly. All this extra information wasn’t quite sinking in.

I remember lying down next to my baby close to midnight, wanting to go to sleep, but the midwives were busy checking his temperature. It had dropped lower than the normal range, so everyone was keeping a close eye on it. I just remember being so tired, I wanted to sleep . I wasn’t aware of what a big deal it all was. At one point I got up to go to the bathroom, then when I came out Mr. L was strapped into his car seat and everyone was ready to leave. “Where are we going?” “We need to take your baby to the NICU.” Whaaa? Not my baby! This doesn’t happen to us! 

Up Syndrome: an unexpected blessing by Sewing Blue

The doctors and nurses at the hospital told us to go home. I needed  rest – they said they would take care of Mr. L and I could come back tomorrow. It was at this point that everything hit me and I burst into tears. The walk to the elevator and our car was full of so many thoughts that had been waiting to break through the wall in my mind. I have a baby with down syndrome. How are we going to do this? I don’t get to be with him tonight! He’s been inside me for 9 months and then suddenly they’re taking my baby away. The NICU?? That’s for sick babies, not ours! We have healthy babies! This isn’t right!

I am thankful for the time we had to go home and let everything sink in. There were so many crazy feelings in the air. I suppose it’d be the same in any situation where you receive shocking information – finding out your dog got run over by your neighbor, your mother has breast cancer, your job needs you halfway across the world for several years. I haven’t had many experiences like this, so I wasn’t exactly sure what to do. But being someone who looks to God for answers, I decided to pray. I prayed for comfort, for peace, for understanding, for help in dealing with this trial of our lives. The next morning as I was showering, I received an overwhelming feeling of peace. I had two thoughts enter my mind: one, this little boy is the sweetest spirit that could possibly enter our family at this time and is here purely to bless ours and others lives; and two, somehow God has trusted us to be able to raise this boy and give him the best life he can have. I feel so blessed and honored that He trusts us to take on this task!

Up Syndrome: an unexpected blessing by Sewing Blue

Since then, Mr. L came home from the hospital on oxygen and a light bed for jaundice. He’s been getting stronger every day, and as of a week ago he got off oxygen! Today is his one month birthday, and I’m happy to say he celebrated by rolling over (so far this kid has not shown sign of weak muscles. I’m really impressed and amazed to be honest). He is so sweet and rarely cries, wakes only once or twice a night, and is truly the sweetest baby we could ask for. We are all perfectly in love.

Thanks for reading this and letting me take this break from writing about sewing. I know we are going to have many challenges, but with that we will see many miracles and blessings. Next time you see someone with down syndrome, don’t be afraid. Talk to him. Talk to his parents. Let them know what a sweet boy they have and how lucky they are.

I like the phrase I’ve see around: up syndrome. So happy to have a little guy with this blessing.

We sure love you, Mr. L. 

Up Syndrome: an unexpected blessing by Sewing Blue