I was having a hard time naming this post. This week was such a hard one. I'll start with Wednesday, June 24th: 2 days after Jack was born and we headed home. When we left the hospital to head home everything was seemingly fine.
Jack still hadn't latched for more than a couple minutes in the hospital, but his weight was fine, so we were able to go home. The pediatrician said that he would eventually "figure it out" (Breastfeeding) when he was hungry. So, we didn't worry and went home. I was so sore that moving around was quite difficult so I camped out with Jack downstairs in our house for the 1st few nights in order to avoid climbing stairs.
By Thursday, Jack was still not eating, and was looking quite yellow. So, I called the DR. and she said to come in that he might have some Jaundice.
It was obvious to her that he was jaundiced and she sent us (my mom and I) to the Lab at Children's hospital to get his bilirubin level drawn to see how high his level was. (Everyone’s blood contains bilirubin, which is removed by the liver. Before birth, the mother’s liver does this for the baby. Most babies develop jaundice in the first few days after birth because it takes a few days for the baby’s liver to get better at removing bilirubin). Jack's level was quite high, so we had to get photo therapy lights delivered to our home and if he wouldn't take to breast, we were going to have to give him formula and I would have to pump.
The DR. also mentioned on that Thursday that she thought Jack was "floppy" and she asked me, "has anyone spoken to you about the way he looks?" I couldn't believe she asked that question! I was outraged...who asks a question like that. I, of course, said no. He looked beautiful to me and then she went on to say that she wanted him tested for Down Syndrome. Michael was at work and my mom was with me at the appointment and I remember thinking..."what?? She's crazy...he's fine" So, at the same time we got his bilirubin tested, they took his blood for a chromosome analysis.
Jack still wouldn't take to breast, so we had to give him formula bottles until I could rent a pump. I rented a pump the next day and have pumped for Jack ever since and still do. We still try daily to nurse, but he is much too used to the bottle now.(side note - he finally latched when he was 5 months old - so it can be done)
We figured out the pumping thing and fell more inlove with Jack. We both held him so tightly those next 2 days not knowing what the results of that test would be. We couldn't see it...he was just so beautiful and perfect (he still is, by the way!).
My parents left Saturday morning, and right after they left, we got a phone call from our then pediatrician asking us to come into the office to talk. Our stomachs dropped. The results weren't supposed to be in for a week...and we weren't ready for the answer. The ride to the office was silent. I sat in the back with Jack while Michael drove. I was praying for strength in my head.
We got there and the doc made small talk about Jack's eating, nursing and bilirubin level (which was not going down). And then she finally gave us the news: Jack's test was positive for Trisomy 21. This is commonly called Down Syndrome. This meant that Jack was born with an extra 21st chromosome..he had 3 instead of 2. Unfortunately, having this ONE extra chromosome sets him up for all sorts of health issues: heart defects, intestinal abnormalities, sight and hearing problems, etc. The list was long as she went through them. Then she said a horrible thing...his life expectancy. She said that he would live to be in his 30s. Hearing that was the worst part of it. We later found out that her information was wrong...life expectancies are much longer now and with the right interventions, he would live much longer. We changed pediatricians.
Michael and I got into the car and cried. We just cried and cried. That entire Saturday was filled with our tears. We held our baby boy and wept. We wept because we didn't understand, we didn't know what to expect, we didn't know what health problems he had or would have, we didn't want to out-live him, we didn't want him to have a difficult life or be made fun of, we didn't want him to ever feel small or different.
Let me interrupt this for a moment to say that when you have a child...your immediate "MOMMA BEAR" exists. You live to protect your child from all bad things..all things that could hurt or wound him. But this was something we couldn't protect him from...something we couldn't change and it was so hard. You love your child so much that you want the absolute best for them...and at that moment..in the beginning you are just sad.
The days past and as we told our families first, and friends second, and did a lot of research.
He was and is our son. He is our heart and soul and we love him. I can't imagine not having him in our lives. And although it was hard to find out the way we did, I am glad it happened that way. We had our entire pregnancy and those first 5 days of his life to just love him without any pressures or concerns or weariness or research or special appointments. And after the initial shock of the diagnosis, we were able to have 'just Jack' and our little family.
We will be a little different from our friends who have kids and we will be a little more protective and we will do a little more studying and exercises, and there will be therapy and perhaps different sports, but we will be together and we will love and that's what matters.
I will attach a story, "Welcome to Holland" It is from a mother who has a child with a developmental delay to express those
initial emotions. I
will say that we love Holland and are glad we are here. I am sure Italy is wonderful, but hey...Holland isn't too shabby! :)
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
