Gabriel Robert Rudolph... that is my demon angel, blessing with a side glance, ray of sunshine 3rd and final child of 21 months. He is my darling little baby boy.... and he has Downs...
He was a surprise. I was not supposed to have been able to get pregnant. I was told by my doctor. I have fibroids, and cysts... I Can't tell you now how I felt, I remember being scared believe it or not, as if I was some 16 year old that just got knocked up. I mean We almost had my 21 year old daughter out of the house and my now 14 year old in high school that next year.
But I was excited... I wanted with all of my heart another little girl. I wanted a 2nd chance to enjoy ribbons, and ruffles... but here's the thing. With ALL of my children I knew what I was going to have even before the doctors ever told me, my heart knew. And my heart knew I was having a little boy. Now my head decided I was having a girl, so when I got one of those early predictor tests and it told me I was having a boy, to be honest I went into a mini depression. I cried, and cried... but after a week I got over it and resigned myself to frogs and trucks, instead of pink and lace. {smile}
I felt him moving already at 15 weeks and saw his precious heart beat with his biological father (yes he came to a couple of my appointments) at 11 weeks. I loved him, my baby boy. Then at the 15 weeks appointment and ultrasound... there were questions about his nucal fold? Nucal fold what the heck is that and what does it have to do with my baby??!! Yes that is what I was thinking. All I could see was this adorable profile... I was then to give blood and they were going to do tests... "okay what ever... do what you have to do" was what I was thinking. I never even thought about my age, never worried about it. I do not feel or look 42.
The tests came back...
I had to wait over an agonizing week, filled with fear, and pain... finally our second meeting with the geneticist... she confirmed my baby had Down Syndrome. I stopped feeling anything, I went numb. I sat there and listened to her tell me what my child would never be. He would never be perfect. He would never be "normal". He would never be in love. He would never be married. If below average children had it difficult if we were lucky he may be above average Downs and there fore maybe just below lower than average in terms of "normal" That maybe it would be better off considering our age and so forth (and never out and out said) maybe he should not be brought into this world, because he was a burden, and would never be anything.
I cried all the way home, I could not breathe. I was so depressed, I did not want to ever wake up. I asked God to miscarry the child I was carrying. I was scared.... How was I ever going to be able to handle this child? And if something ever happened to me or my husband how unfair would it to be to burden our other children or another loved one with "This" child. I no longer felt anything for the baby that I was carrying. Who just seven short weeks prior I loved beyond words.
Then in my 20th week we found out he had a upper intestinal blockage, called a Duendenal blockage. This is very serious and life threatening once he would be born requiring his needing surgery with in the first week of his life and then because of it he would require a G-tube to eat through for the first several months of his life. I didn't think I could get sadder.... I was wrong. All the while, I could not come up with a name for my baby. I had emotionally detached myself from him, so I could not name him. I cannot explain this, but with my other children I knew immediately their names, but with this little boy... nothing.
In my 27th week I went to one of the best childrens cardiolgist at Childrens Hospital of Orange County to have a fetal echo cardiogram to make sure the baby's heart was okay. See with Downs babies, they have alot of physical conditions that can occur. Well we were batting a thousand, my little baby also had a very serious heart defect called AV Canal defect. Basically his little heart was going to have to be rebuilt. He had only one valve and only 2 chambers. So between 4 and 6 months he would require open heart surgery to repair and build his heart. I went to this by myself. I almost did not make it home. I left the office I know that much. I know I pulled out of the CHOC parking garage. I pulled into the parking lot across the street and completely lost it. I know I called Gus my husband... I cannot tell you what I said, and I know I was incoherent. I sobbed until I collapsed. I could not drive. I just closed my eyes and asked to die. I am not proud of this, but this is what I did. I am not sure how long I sat there... I think I just ran out of tears. I drove home in a mental and emotional fog.
Everything I had dreamed for my baby was gone. They baby I thought I was carrying was gone. I did not know the baby I was carrying. I did not know what to do. We talked, and I cried more. My husband was amazing. We both were not sure we could do it and after the geneticist painted such a bleak out look for this baby, we just knew we couldn't do it. So we decided to give him up for adoption to a family who knew how to handle a Downs baby.
Then and I cannot tell you how we came upon it, but we found a support group for parents of Downs babies, kids, children. We decided, why not, they may have some adoptive resources. So we went. And that was our epiphany... our turning point. There I was 28-29 weeks pregnant, depressed, feeling sorry for myself and my baby and I walked into a room of love, acceptance, and of Downs children who were not even close to what the geneticist had described. They were playful, happy, stubborn, funny, loving, determined, clever, intelligent, warm, and beautifully "normal". And that is when "Normal" no longer existed. It became "Typical" because really who is "Normal" I cried but this time because I had hope, there was light and my baby boy had a future. Sure it was not the "perfect" future I had dreamed for him, but he had a future and it was perfect for him. And he was perfect after all.
On the drive home we talked and realized how very lucky and blessed we were, and probably even luckier for the geneticist that I didn't have a bat, because I was furious with her and what she almost had convinced us of... and embarrassed that I allowed her to let me convince myself of what my child was. Thing is, like any child, his future was not written and it was not for me or anyone to write it for him. I found his name that week... Gabriel... the angel, my angel. I fell in love with my wonderful baby boy Gabriel.
The rest of my pregnancy was difficult and had it's complications. And the weeks and months after I had Gabriel were extremely difficult physically and emotionally... me almost dying due to undetected heart failure and hospital stupidity. I didn't even get to see my son but for only for 15 mins after I had him before he was rushed off to CHOC. And I was barely home a few days before I was back in the ER and my heart failure finally diagnosed (was not in my head!!!) which kept me in the hospital for about 2 weeks and in a wheelchair for about 5 months and a weight loss of (which I have gained some back).
But we have made it through. Through the surgeries, infections, heart conditions, weeks of hospital stays, G-tubes and face masks. We have ourselves a very happy, very clever, very healthy, very intelligent, teething and crawling and standing, running, climbing into and onto everything little boy. He surprises us everyday with the things he does. He is a blessing and the most amazing thing I have ever done. I could not be more in love and in awe of him. I learn from him every day. He was always meant to be, and he is going to prove that idiot geneticist how very wrong about him, and every Down Syndrome person she is. He is vital, he is amazing and he is a blessing. He is so typical it is scary.
His future is bright and so filled with possibility... My Gabriel... my demon angel. I love you Porkchop.
P.S. If you find out you are pregnant with a Downs baby, or have a Downs baby, consider yourself blessed, they are a treasure. Be grateful for the gift God has given you. It is an honor. God doesn't give just any woman or mother the privilege of raising one of his angels.
This is an amazing story! You had to mourn the idea of the baby you had already imagined having. Thanks for the reminder that all babies are a blessing.
ReplyDeleteFirst, I commend you for knowing his diagnosis and keeping him. Like you, I found out during pregnancy and the option to terminate was not an option for us. It amazes me that for some, the prenatal diagnosis is a death sentence.
ReplyDeleteI share my "Did you know?" story here - http://mrsphotography.blogspot.com/2010/01/fact-friday-did-you-know.html
Michelle...
ReplyDeleteI read your story and it was beautiful. And I am so glad you knew and choose to bring your beautiful little guy into this world. What a difference he will make, and already has :)