Guest Writer: Sally Adams- I Didn’t Know What I Was Missing

If you had asked me, in June of 2010, what I knew about Down syndrome, I probably would have said something like, “Oh, you mean like that guy from the TV show ‘Life Goes On’?” And that most likely would have been the extent of my knowledge – if you could even call that knowledge. Growing up, I don’t recall ever having met an individual with different abilities. In fact, knowing someone who wore glasses, or went to speech for a stutter, was a big enough difference in my world.

 But we (my husband Ben and I) found ourselves coming face to face with an unknown the day after our 7th anniversary. I remember we had just learned that our baby was a girl – a miracle amongst Adams men, as they all seem to have 3 boys. We were overjoyed, and I began planning coordinating mommy daughter outfits. But on June 20th, 2010, we sat in the darkest, most dungeon like of examination rooms with a stoic, emotionless doctor who began to explain all the things that were wrong with our baby girl. Beginning an ultrasound with “We have a problem here” is never something an expecting parent wants to hear. I understand that doctors must be thorough and explain every possible outcome, no matter how gruesome or unkind they may be, but it certainly does no good for an overly emotional, 20-week pregnant mother who was so excited to be having a little girl.

She had increased fluid at the base of her neck, enlarged ventricles in her brain, a very low profile and bridge on her nose, noticeably short femurs, and my initial blood work pointing to a 1 in 24 chance at Down syndrome that was increased to 1 in 12 after the ultrasound. He suggested I have an amniocentesis right that minute, but I was in no condition to have a gigantic needle poked in my stomach. I cried so uncontrollably at the what-ifs, and markers that were noted, that they had to escort us out some secret back door of the hospital.

We cried for days, talking nonsense back and forth to one another. And after a very supportive and encouraging appointment with our regular OB, we decided to have the amnio. Yes, there are risks in any procedure, and yes, we were planning to keep our baby no matter what the diagnosis – but through prayerful consideration, and loving wisdom from our OB office we felt that not knowing was of greater harm. The amnio was not scary or painful or uncomfortable – it happened faster than I had imagined. And, 10 days later, that stoic, emotionless doctor called to tell us that our baby girl did have Down syndrome and he guessed (based on previous office conversation) that we would be continuing our pregnancy. I told him yes, and he transferred me to his front office so that I could make an appointment for the following week to continue high risk prenatal care. Did you know that 90% of babies with a prenatal diagnosis of Down syndrome are aborted (some studies say 67-85%, but that’s beside the point). That means that every time you see an individual with Down syndrome there are 6-9 others who never had the chance at life.

With knowledge, comes wisdom, and life, and so we began to learn about Down syndrome so that we could make wise decisions with the continuing and future care for our daughter. We read too many outdated articles and googled too many medical websites, but we also continued the high powered ultrasounds and had a prenatal echocardiogram. More than half of babies born with Down syndrome have a heart condition requiring surgery within the first few weeks of life, Melanie’s heart was perfect. My pregnancy continued as expected, although with a few more weekly appointments than I had anticipated, and on Monday, November 15th, 2010, at 9:56 pm, Melanie Rose Adams was delivered via C-section (only because I had no amniotic fluid due to 3-days of food poisoning. But that’s a different story for a different time.). She was perfect and pink and tiny compared to her older brother (6lbs 9oz, brother was 8lbs 12oz). And yes, she did have Down syndrome. But we were ready, and she was a baby just like any other baby is. And we loved her for all the extra she was already.

 

Over the last 4 years I’ve learned so much about Down syndrome from doctors and medical experts and journal articles – but I’ve learned way more from other mamas with special kids and from Melanie herself. Here are just a few things I’ve learned:

• Low muscle tone is a good thing – especially when Melanie’s tired or has just woken up. She melts into your body and feels like carrying around a sack of flour.
• The extra space between her big toe and other toes is perfect for a pair of Rainbow flip-flops.
• The almond shape to her eyes is especially effective for giving you the “I”m cute and I know it look….now give me some chocolate.”
• She’ll be able to shop in the children’s section much longer than most – resulting in more clothes for a better price. At nearly 4 years old she still wears 2T and some 3Ts to cover her belly.
• The looseness in her joints allows her to excel in her gymnastics class. The straddle position has nothing on Melanie.
• She has bad days just like everyone else but her love is unconditional and is not selective. Everyone she meets is a recipient of her smile and love. She will not hesitate to hand out hugs and blow kisses.

 When I tell people about our kids, I often describe them this way: Brock is the child I always wanted and Melanie is the child I always needed. Melanie teaches us to slow down, to notice something over and over because we may see something that wasn’t there before, and that it’s ok to take longer to do something – we appreciate those milestones so much more when it’s taken us a lot of hard work to finally achieve our goal. We don’t read those medical books anymore, we just keep them in a closet for reference when needed. And, we don’t treat Melanie any different from her brother – everyone eats their meals, everyone cleans up their messes, everyone does their very best. I can’t believe what we were missing out on before she was born – what I was missing out on – as a mother, friend, human being. She has opened our eyes to the world of people with different abilities – a loving, encouraging place where everyone is included, and we thank God each day for the chance to experience life through Melanie’s eyes.

Credentials: Married 10+ years, 6 year old son, 3 year old daughter, teacher of teachers for 10+ years

Likes: Morning coffee, Ugg slippers, anything chocolate, dressing up, and balancing work and home life

Dislikes: Getting sneezed on, bad hair days, tuna noodle casserole (sorry mom), and balancing work and home life

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