Where to begin?
Josh was born in May of 1995, feels like five minutes ago in some respects and a lifetime ago in others. How does this happen? Where did the time
go? How did we get here? A blink of an eye! Every good story has to provide a little background information! This is where our story, what we like to call the rollercoaster of Down syndrome, begins~~~
I was 28 years old, married for eight years with a five-year-old, typical son,
Tim, when Josh was born. During the course of my pregnancy, we consented for some prenatal testing. Through a blood draw, the lab performed an Alpha-Fetoprotein test (AFP), which I had declined while carrying my first son because of its inaccuracy rate but, for some reason, while carrying Josh, we decided to have the test. It came back negative for any abnormalities. YAY! I called everyone I could think of to tell them that the baby we would have on or around June 15, 1995, was going to be healthy!
However, on the Friday of Memorial Weekend in May 1995, very much to our surprise, Joshua Michael arrived THREE FULL WEEKS EARLY, weighing in at 8 pounds, 1 ounce, with a cleft lip, Donald Trump sweep-over hairdo and Down syndrome!! I knew he had Down syndrome the minute they placed him on my chest.
You see, 10 years prior to Josh’s birth, my cousin, Janet moved to Massachusetts in order to get her son Early Intervention services. His name was Paul, he was the love of my life (besides Tom who I was dating at the time) and he had Down syndrome. Tom and I took that baby everywhere we went, zoos, baseball games, friends’ houses, even attended his early intervention classes. He loved music and we learned how to sing all his favorite songs in sign language with the hopes that he would start to use signs to communicate his needs and wants to his family.
One very sunny summer day, at my grandmother’s birthday party, when I was 18 or so years old, I had laid out a blanket in the yard, placed Pauly and all his toys on it. We sat together singing and listening to his music. I loved talking to him. I was overcome with love for this little boy and leaned in close to him and whispered, “someday Pauly, I want a baby just like you.” My mom overhead the comment and turned to me quickly saying, “Karen, don’t say things like that!” We jump ahead 10 years and Josh arrives, a baby just like Pauly! Hmmmm, who exactly was listening to my wishes that day, besides Pauly and my mom?
So anyway, seems I may have digressed there I tad bit. Josh arrives, we’re crying, the NICU doctor comes in, stands at the side of my bed and says “we think that your son may have Trisomy 21….Down syndrome, but we’re not positive.” I looked at him and say, “you know you’re not wrong, I know you’re not wrong.” He reassures me that they weren’t sure and would do a test using blood from the umbilical cord and have the results in a few weeks. Tom and I mourned for 24 hours, each in our own way.
Tom had actually arranged for a crew of friends to come to our house over the long Memorial Day weekend to help him replace our roof. He called to tell everyone that the roof project was cancelled, once we knew the baby was, in fact, coming. Once Josh was born and we found out he had Ds, I knew exactly what was best for Tom ~~~ go home and put a new roof on our home and that is exactly what he did the next morning!
I wanted one thing, for my entire family to be together. I NEEDED TIM! I kept crying and telling Tom to have my parents get Tim to the hospital. I had spent the last five years of my life with Tim as my only child and he was my best friend. We did everything together, including (all of a sudden at the beginning of my pregnancy) going back to church, attending mass every week, just he and I, sitting in the same pew, saying the same exact prayer: “Please God, let our new baby have 10 fingers, 10 toes, and a healthy brain.” Week after week after week, that is what Tim and I did every single Sunday. Why, all of a sudden during my pregnancy, did I find the need to be back in my church?
My mom and dad arrived at the hospital with Tim in tow. I placed Joshua up on my shoulder facing away from Tim as he scurried to the side of my bed. I wasn’t hiding his Down syndrome, but I was hiding his cleft lip. I said, “Tim, you know how we’ve been going to church and saying our prayers every week?” He eagerly, replied “YUP!” I continued, “well, our new baby has 10 fingers and 10 toes, but we don’t know how healthy his brain is going to be, because he has Down syndrome.” Tim’s response was immediate and emphatic, “I don’t care, he is my baby brother, CAN I HOLD HIM NOW?” At that moment, I knew this was the first step in our healing and letting go of what we thought our life was going to be, allowing a change in our perception of how things were going to be and knowing that things were going to be okay!
A few hours went by and a nurse appeared in our room, telling us it was time to “try to feed him.” She continued, “babies with Down syndrome usually have a hard time sucking, so I’m going to go get you a special nipple to try.” Ummmm, what? What, hang on…..I thought to myself “we’re already treating him differently? We’re already making an assumption that he can’t do something?” Then I finally got the words out of my mouth – “Let’s try a ‘regular’ nipple first and if he can’t do it, then we can switch to the ‘special’ nipple!” She thought that was a fine idea and my instinct to advocate for him was born, the second sign that EVERYTHING WAS GOING TO BE JUST FINE!
I won’t lie, there have been many ups and many downs ~ just like a rollercoaster ride. BUT for anyone who has taken a ride on a rollercoaster, at the end of it, the adrenaline is pumping, you’re smiling, laughing, you can’t stop talking about it, maybe a bit sick to your stomach but, for the most part, IT WAS A VERY EXCITING RIDE!!