I was the mother of 3 boys. Often asked, “Don’t you want to try for a girl?” My reply, “NO! I’m a BOY MOM, I would declare with pride, all the while rolling my eyes at patent leather shoes and BIG FAT hair bows. Who had time for such things?………………surely not I.
Plus, we were already the parents of a child with autism and as I would say, “Love that Johnny, but he is a full-time job!”
I remember in the Fall of 2008, having these feelings that some big changes were going to happen. At the time I was focused on trying to start a home based business, so I thought THAT was it. I could feel the business success coming my way.
Little did I know………………..I was correct……………….Big Changes were coming…………..just not the changes I planned.
In November of 2008, suspicions were confirmed. Congratulations!!! You are pregnant!! Shock and awe set in. My closest friends even thought I was tricking them! Guess What? I would say. “I don’t even want to say it out loud,” said one friend.
The Baby was to be born just when Little Brother was set to go to kindergarten. So much for that free time, I thought.
Then excitement set in. Wow!!! A baby! I was going to be the mother of four. A real Boy Mom. Four boys!!! Never dreaming I would have anything but a boy.
I started off on all of the “routine” pre-natal care. But this time, things were different. Nothing seemed to be going according to routine. At 16 weeks I decided to have the “triple-screen” blood test, due to my advanced age. Then I got the call, “the blood tests show there is one in ten chance that your baby has Down Syndrome.” WHAT???
We made the decision to have further conclusive tests. On a sunny California day I got the call. This phone call was from the Genetics Counselor at the Hospital. She said, is this Mrs. O’Connell? Yes, it is. Well, she said, we received the results of your Amnio and your Baby has Down Syndrome. At that moment I remember my blood went cold and my heart dropped to my knees. I remember looking out the window of my boys room and swear I thought I saw the color of the sky turn a different color of blue. WHAT??? How could this “happen to me, I thought.” (this is not a thought I am proud of but it is what I thought). I was numb. I immediately thought, Autism and now this, what is God thinking, what am I going to do???!!!!
What I did………..what I had to do…………..I carried on…….with fear……..but on I went.
More appointments followed. More news to digest. “Routine” fetal echo cardiograms results overwhelmed me. Your baby has a “Complete AV Canal” and a “fused valve.” Lots of sketches showing us what this “meant.” All it meant to me is that my Baby is in danger. We were given reassurance that this defect was “quite common” in Babies with Down Syndrome and after open heart surgery all would be well. Everything sounded so “routine.”
We did our research and worked on coping and digesting what was to be our new world. I am not usually a big planner, which, in this case, was a good thing. No amount of research could have prepared us for our New Life…………...Life with Madeline!
On July 4, 2009, Our Precious Baby Girl, Madeline Elizabeth, came into this world, WE WERE BEYOND IN LOVE. No “research” necessary. She was just BEAUTIFUL and I couldn’t wait to show her off. Neither could the Big Brothers. Daddy, took one look and said, Madeline, YOU can have whatever you want, Precious Baby Girl!
Big Brother said on meeting her…………..”Mommy, I don’t know why they say something is wrong with her, She looks fine to me……….”
No Doubt………….HEAD OVER HEELS were we!
For her congenital heart defect, she was doing “remarkably well”. She never saw the NICU like we had prepared ourselves for. After two short days, much to our surprise, we were able to take her home. I refer to those days as “Our Honeymoon.” Our rest for what was to come.
We spent the next 16 months on a roller coaster in a near constant fight for her Precious Little Life. It is a fight I would do again without a thought. It is a fight Madeline did with tenacity, grace and style.
Within the first six months of life Madeline had as many surgeries. Our Honeymoon was over when at 6 days old she began vomiting uncontrollably. My friend rushed us to the hospital. Diagnosis, duodenal atresia, we didn’t know if she would make it due to her fragile heart. That is when she showed us her fighter’s heart and spirit. This was followed by a five-week hospital stay and a surgery to place a feeding tube.
What followed the next five months………….a cross country move, open heart surgery, an emergency trach, another stomach surgery. All of this culminated into many nights “sleeping” in many hospitals. You will sleep anywhere when it comes to your Baby…………and Yell at anybody. Until then I didn’t know I knew so many 4 letter words.
Madeline continued to delight and amaze us with her unbreakable, gentle spirit and sass! Not to mention her Sweet Face and ABSOLUTELY PRICELESS SMILE!
To our absolute horror, on November 2, 2010, our world would change again………………and nothing would ever feel the same. On that morning our Precious Madeline let out a scream, which was to be her last. Despite our pleading prayers, Our Angel doned her wings and was called home.
My arms continue to ache and long to hold her. Her smile and sweet essence are etched in my entire being.
Madeline was a wise little teacher and taught us great lessons about unconditional love, strength and true beauty. Little did I know how right I was that November of 2008………………..change WAS coming……….a Perfectly Beautiful 6 lb 9 oz Baby Girl. Her life on earth was just 16 months, but what an incredible life it was. Her death changed us forever but because she LIVED we will never be the same.