I will never forget my 12 week ultrasound with Benji - my OB was over an hr away as I was seeing a high-risk OB because of my uterine irregularities and my previous premature birth (Zac was born at 34 weeks weighing 4lbs 12oz). At this appointment, the Dr did a NT scan that measured the layer of fluid around the baby....it was apparent immediately that there was LOTS of this fluid. I had never seen anything like it. The Dr measured the fluid behind the baby's neck and it measured over 6mm - anything over 3mm is reason for concern. My OB was very serious as he performed the sonogram - I still have the DVD of the sonogram and can clearly hear the concern in his voice. I was trying to process everything he was saying to me.....but my mind was racing. What?!?! Something might be wrong? You are very concerned? What is Trisomy 13, 18, 21 etc..... We need to have an amnio?
After the appointment, I went out the car and called my friend Millie and just started crying - "it looks like something is wrong with the baby!" I blurted out. I still had an hr drive home and was an emotional mess. I cried all the way home. When I got home, Joe and the kids were down stairs. I tried to be brave but I felt anything but brave and it did not take long for the tears to come....."Dr Gorrell thinks there is something wrong with our baby." Of course Joe asked lots of questions and it was hard to answer them seeing as I didn't know much more than what I had already told him. Joe is my rock - he was very calm and said we have to trust in God - and wait and see what the amnio results say.
***Why an amnio? Because our OB had never seen the NT fluid that thick before and was very concerned that the baby was not going to make it birth or might pass shortly after - this was information we all needed to know to prepare ourselves for the arrival of a critical baby***
A month later, at 16 weeks, we had the amnio. A rather unpleasant experience as my irritable uterus clamped down on the needle and began pulling it inward - ouch! It was a scary time - it would take 2 weeks to get the results. At this sonogram, we discovered that we were expecting a BOY. We tried to be calm and optimistic. We didn't know how to feel or what to think.
Another 2 weeks passed and I received the call (unfortunately, Joe was away on a missions trip so I took the call myself) - the nurse called and said "Dr Gorrell wants to speak with you" - my stomach felt heavy and my heart began to race.....the Dr congratulated me on the 100% guarantee that the baby was a boy and then ever so gently said "and the child does have Down Syndrome." I forced a laugh about the gender and spurt out some comment - trying to sound as if my heart had not fallen into a zillion pieces. He talked about some "stuff" for a few more minutes and then told me he now wanted to see me every 2 weeks because of the added risks of carrying a child with DS. I hung up the phone and cried.....and cried. I made a few phone calls to tell Joe, my mom, my brother, and my aunt.
That next Sunday, at 18 weeks, we announced that we were expecting (my belly was SO tiny during my pregnancy no one even knew I was pregnant yet!) - In the announcement, we told his name and also informed the congregation of his diagnosis. I was crying throughout the entire announcement.
WHY us? WHAT did I do wrong? DID I cause this? WHAT does this mean? WHY? WHY? WHY?
When we received the phone call that our sweet Benji had Down Syndrome, our lives were forever changed. I would never had imagined in a million years that something could be wrong - that OUR baby would have DS. I was 23 and healthy.
Joe and I grieved the loss of a healthy baby for a bit - it was a hard time.
But, it didn't take us long for God to give us complete peace. Very shortly after the amnio results, I felt the first baby flutters - what a precious blessing those little flutters were. "I'm here Mom - I feel just like your Essie and just like your Zac. I am your baby."
There were tears here and there - but they were not tears of anger or bitterness, they were tears of worry and concern - Did Benji have a heart defect? What about his other organs? Will he get leukemia? etc....We had a lot of concerning results during the pregnancy including signs that Benji's heart did have a hole and that it was working very hard. I also started having contractions at just 24 weeks.
I was hospitalized during my 25th week and delivered Benji in my 26th week. He was born weighing 2lbs and measuring 14in. I am forever grateful we opted for the amnio as discovering the diagnosis for DS following such a premature birth would have been very difficult for us.
From the moment of his birth, Down Syndrome took a back seat - not once in the NICU did I wonder about his potential "delays" or "disabilities" - All I was concerned about was his LIFE. One look at that sweet, tiny Benji and all apprehension of his DS vanished in an instance. Benji's prematurity was by far more devastating than his DS.
Yes, Benji has Down Syndrome. He has "Special Needs" - he is delayed by over 50% and requires the use of 24/7 oxygen, C-PAP for sleep, a feeding tube, numerous medications, therapies, and specialists. The funny thing is that these special needs have become "ordinary" needs for us by now....we don't know any differently!
Yes, Benji has Down Syndrome - and we wouldn't trade him for the world. He is a beautiful addition to our family and compliments us perfectly. He is absolutely delightful and such a joy.
Of course, we were never planning on having a special needs child. But most people don't.
So why adopt another? The birth of Benji has changed our life forever. Joe and I will never be empty-nesters. We are committed to caring for Benji all his life. Doesn't that qualify us as being perfect parents for additional special needs children?
Down Syndrome? No problem! For us, Special-Needs have become Ordinary-Needs.
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