For tonight's answered questions we're getting a little more serious than we were yesterday. UtMomof5 asked, How did you react when you found out your son had downs? I hope this is not to personal, I have a friend stuggling with this right now.
And Poltzie asked, Did you know that Micah had downs before or after his birth and what were your thoughts about it all?
I've worked with so many parents of children with special needs and I never tire or hearing about their thoughts when they found out. I find the honestly to be quite beautiful and something all parents can learn from.
I figured I'd combine their questions and post the story of Micah's birth. It's long so grab a cuppa and have a seat.
We didn't know Micah had Downs before birth. When our fourth child was handed to us we were very proud parents indeed. We did the usual "he looks like" game and I was adamant that he had Luke's mouth. I just couldn't place the eyes. They looked like nobody's in the family. How nice that he's his own little person and not a mini-me of someone.
People came and went that day bearing gifts and congratulations. We were euphoric, as only new parents can be. Sam went home in the evening so he could get some rest for school the next day. (He was in x-ray school at the time.) My newborn and I snuggled down in bed, and the world was a wonderful place.
The next morning the pediatrician came in for his morning rounds. Oh so casually he said they were testing our son for Down syndrome. With his strong accent surely he didn't say what he just said. I questioned, he repeated.
And then the world stopped. It was turned upside down and shaken, much like a snow globe. And we were expected to go on with life as if nothing out of the ordinary had happened.
I had the presence of mind to ask what they based their suspicions on, and he answered in a very professional, noncommited, this-is-Downs way. But we didn't see that in Micah. And I didn't understand. And then he left and I was all alone with this information and my baby.
I couldn't call Sam. He was in school and if he missed a day he had to make it up. He'd already missed the day before and there was nothing he could do anyway besides worry with me. Let him finish his day blissfully ignorant. Oh, if only I could be again!
The day drug on. I didn't allow myself to cry because I knew once the first tear fell I'd never be able to stop. People came and congratulated me, bearing gifts and chatting. I only wished for them to leave. How was I able to conduct small talk with friends when the world was pulled out from under me? And yet I did.
Sam got home from school and called to say he'd pick up the kids, get them dinner and bring them in to see us. I asked if he could just come right in. I didn't want to tell him over the phone, but he gave me no choice. He instantly hung up and came to see me. We spent the evening crying, and trying to see what the doctors saw in our perfectly wonderful son.
We chose not to tell family or friends until the test results came back. If it was negative we would have made them worry needlessly. If it was positive they'd have their whole lives to live with the knowledge. Let them continue to think that our dear boy was perfect in every way.
But God had other plans.
The next morning my mother in law stopped in on her way to work. While she was there the pediatrician made his rounds. How could I ask her to leave the room? She'd know something was up. Maybe he wont' mention it. But he did. I never made eye contact with my mother in law. I thought my head would explode trying to keep from breaking down right then and there. And then the doctor left, with an awkward silence lingering in the room. Of course I filled her in and explained why we chose not to tell her. And begged her not to tell anyone until the results were back. It would only be a week.
The two days I was in the hospital after Micah's birth were hardest because I knew nothing about Downs and couldn't get to my computer to research it. I needed to know everything I could to face this giant in our lives. And when I finally got home I sat for hours, holding our dear and very precious baby in my arms, reading website after website on Downs. Only they all said the same thing, and said very little. I cried my way through a box of Kleenex per hour.
By the end of the week, Sam and I had said that if his diagnosis came back positive we'd be okay with it. But even consulting nursing friends and the midwives, we all agreed that it would probably be negative.
Micah was a week old on Becky's 8th birthday. I had Josh to the doctor for strep throat and figured I'd ask if the test results were back for Micah yet. I was alone with the 4 kids when the pediatrician said yes, it was positive. So business-like, so calmly, so matter of fact.
The world was spinning out of control. I needed to distract the older kids so they wouldn't catch words and phrases of what the doctor was saying. I needed to not think about what was going on inside my head. I needed to get home. Now.
I put the kids to bed at 6:30 that evening. On Becky's 8th birthday. And I told Sam what the doctor said. We cried and held each other, and held our newborn. And realized that we really weren't okay with the results being positive. How does one prepare for something that will change your life forever? How does one go about being alright with having your child diagnosed as mentally retarted? How does one prepare for a lifetime of battles for the rights of your child, and discrimination, and unkind peers? How does life go on?
And yet it did.
One of the nurses told me that "he's still a little boy, and will run through the yard and play in the sandbox just like your other boys." That has been a lifeline for me through the years. Sometimes when things get overwhelming, I have to remind myself that he's just a little boy after all. He may have Downs, but he has blonde hair and blue eyes, too. He may be retarted, but he has an amazing smile and loves to laugh. He may not be what we planned, but he's exactly what we wanted.
I struggled for the longest time knowing that God made Micah with Downs on purpose. My God is the God of the universe, and He never makes a mistake. Ever. But how could God create a child with a disability? What kind of love is that? Everything God does has a purpose. But what good could possibly come out of a child being afflicted with a lifelong disability? Faith is believing in something that you can't understand, and our faith has increased abundantly because of our small child. So has our capacity for love.
God taught us that the deeper you feel grief and pain, the deeper you can feel love. We were through the entire gamut of emotions. We were angry, we felt betrayed, we were confused, we were hurt, and we were so afraid of what the future might be. We subconsciously mourned the loss of our "perfect" child. But we found what God had intented for us all along. And it's sweeter than we could have ever imagined.
For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you a hope and a future.