Micah's Very Beginning

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.
Jeremiah 29:11

44 comments:

brandianndesigns said...

the love coming from this story brought tears to my eyes.

thank you for sharing your story.

Leanne said...

Thank you for sharing. Thank you for your honesty. Hugs.

Bluepaintred said...

thank you for letting us read this. it was absolutely beautiful.

Debbie @ Three Weddings said...

AMEN! I feel so blessed to be taught unconditional love and acceptance by these special gifts.

BTW, I love the picture of Micah in your header. His expression reminds me of Peanut. He is so sweet.

Pam said...

That was a beautiful story! Thank you for sharing. Your love and strength are an inspiration.

Irene said...

Thank you so much for sharing this story. Yes, you brought very real tears to my eyes because I know pretty much exactly how you feel. When we received Caroline's diagnosis and the entire year (and more) after that was the hardest time of my life. I truly wonder sometimes how I survived. But yes, she is a blessing beyond anything I could ever had expected.

Again, thank you so much for sharing.

Momisodes said...

You are such an amazing mother and writer. Thank you for sharing your story. It brought me to tears following your journey as new parents to Micah.

Wineplz said...

that was beautiful.

I felt your fear and heartache, and mostly your love.

I can't stop crying!

have you thought about writing a book?

Anonymous said...

Wow. I love your attitude. Thanks for sharing.

Cecily R said...

I firmly believe that people like Micah have their place secured in heaven even before they are born.

I am amazed frequently by your attitude and strength. He's beautiful, but I know its incredibly hard for you as a parent.

Thanks for letting me read your story about him.

Laski said...

Karen . . . this is the perfect post. Seriously, real and honest. I'm so happy you decided to share it with us.

He is a blessing. I have enjoyed reading the stories, getting to know him, you, your entire family. What an amazing family you have . . .

KATE said...

Thankyou so much for sharing Micah's sweet story with us! I also believe that precious little spirits like Micahs are that way for a reason, and they are that way because they are more precious to the Lord than we will ever understand. What an amazing story! Thanks for letting us in on your sweet family!

Kellan said...

Oh, Karen - this was a beautiful post. It made me cry and so happy that Micah has you has his mother!!! I loved this line, "He may not be what we planned, but he's exactly what we wanted." You are so luck to have this special boy and he is so lucky to have the two of you - your whole family - to love and take care of him. Thanks for sharing this special story. Take care - Kellan

The Sports Mama said...

When God gave you to Micah, to love, to entertain, to make happy deep down to the depths of your heart and soul... He gave Micah the most amazing family ever. Parents, a big sister and two big brothers.... who don't see anything but the PERFECT addition to the family.

He must really love your little angel. There's no other explanation for it.

The Sports Mama said...

Also? Thank you for posting that specific verse. I needed to be reminded of that right at this very moment in time.

Karen MEG said...

Karen, thank you for sharing this beautiful, beautiful post. For being so honest, and so personal. Micah is such a gift, and your family and world is obviously so complete with him.

You have a lovely family, Karen, you are a very special mom and woman, and I am so happy to have "found" you.

Wonderful World of Weiners said...

I grew up across the street from a girl named Amy. Amy had Downs. She remains one of the best memories of my childhood. She was loving, friendly, gently, kind and warm to everyone and everything.

I really miss her.

Hallie

CanadianMama said...

That was beautiful, thank you for sharing!

Anonymous said...

Thanks for sharing that post. I was really beautiful. I was especially touched by your thoughts about God, because I deal with those same thoughts thinking about the son I lost 5 years ago. That last Bible quote is something my husband and I tell each other all the time, but especially when we are struggling.

Thanks.

rpm

Eve said...

"He may not be what we planned, but he's exactly what we wanted."

That simple statement covers so much of our lives. How boring our lives would be if we always got only what we had planned.

Fannie said...

It may be hard to see God's plan, but keep the faith - He has one.

KG said...

I am also really glad you shared this story. It's so refreshingly honest. I know you're a great mom to him and all the rest of your gang.

And I also apologize in advance if this is nosy and snarky . . . but did you get any of those "screening" tests when you were pregnant?

And I second the sentiments of Eve - I'm sure he's wonderful and probably teaches you guys as much as you teach him!

Kristen said...

That was so beautiful and honest and I can just imagine a young mom somewhere googling down's syndrome because she's facing the same diagnosis you did.

I pray she finds this post.

God chose you to raise such a special boy.

JennyH said...

I love that post. I like hearing how people were told the news and the reactions.
Thanks for sharing that personal story.

Anonymous said...

I've been wondering if, in this lifetime, you will ever have even a slight idea of how much difference you are making in the lives of other parents?

imbeingheldhostage said...

I started a comment earlier, but Miss Ky insisted on helping-- so, what I was trying to say was, I was having a hard time coming up with words that did this post justice. It was like a glimpse right into your heart. When I was carrying Son #1, I misunderstood the Dr and thought he had Downs. I spent four months reading everything I could and preparing for him. He didn't. And then Son #3 came (and I've told you about him) and I completely agree that God doesn't make mistakes. I believe some parents are blessed and get to experience something you can't describe.
Thank you for the touching post!

Paula Lynn Johnson said...

I honestly don't know what to say. That was brave and heartfelt and wonderful -- just like you!

I read a column Sunday about George Will, who has a Downs child. He's quoted as saying whatever his son's condition, he has the gift of being loved and of loving others. So true.

jessica said...

oh, that is such a heartwrenching and heartwarming story. thanks for sharing, karen. micah is gorgeous.

just jamie said...

"He may not be what we planned, but he's exactly what we wanted."

Oh my Gosh. Sometimes I *say* I am teary to people as I read their heartfelt posts, but this time I mean it. I adore you, and your journey, and your beautiful family. What a gift you are to the world.

Thank you for sharing. Thank you, thank you for sharing sweet Micah and the joy he is to your family. He's just a little boy...love that!

Flea said...

I hate crying right before bed. :)

I can't even imagine the ramifications in the lives of your other children, growing up with the challenges and empathy they have and will. God is truly good and loving, isn't He?

Shellie said...

Wow! I was amazed at how little info and support you got from the medical community there, that floored me. Other than that, you are so great, the other commenters say it all; except, you know how lucky you are to have Micah. He's perfect in a different way, a way most of us never will be, unfortunately. Thank God for the Micahs around us and moms like you who care for them so completely.

Aimee said...

Amen, mama. This is why I come here :)

Michelle said...

thanks for sharing your story..it brought back a lot of memories for me. I can't believe that Dr would tell you that news w/out waiting for your husband; or that he would just discuss it with your MIL there - not knowing if you had even mentioned it to her yet. Seems he should have had a little mroe tact.

I remember when Joe and I were discussing the possibility and we both agreed "well we can handle something like Ds right? at least it would just be Ds" and then when it in fact was Ds it was like "wait a min! I didn't really mean I could handle that!" LOL :)

Burgh Baby said...

Perfect post about a perfect little guy. :-)

Anonymous said...

What a beautiful story. He is perfect.

I hope to meet your wonderful family some time :)

Unknown said...

Sorry it has taken me so long to read the answer to my question. Thank you for your honesty -- yours and Micah's story is beautiful. You have taught me a lesson, we may not understand God's plan but we need to trust Him.

Thanks again! I will share this with my friend.

caramama said...

Thank you for sharing Micah's story. You are truly amazing... in part because of the honest you shared with us about how tough it was to hear the news.

But to see him now and see you and your children? To read what you write about them and hear your thoughts and feelings as the grow? It really shows how amazing you and your family are.

Susan said...

Karen, thank you for sharing this, including your honesty about both the joys and pain when first learning about this. And, the nurse was right. I had the pleasure of witnessing Micah running through the yard and playing on the swing-set in person -- he was definitely enjoying himself like any boy!

Anonymous said...

"God taught us that the deeper you feel grief and pain, the deeper you can feel love." Your statement is so true. I just want to add...the deeper you can love....and that is exactly what Micah has, pure and true, deeper love from his blessed by God parents. You are correct, there was no mistake. God bless you for for your heart to share these personal memories with us and to teach others. God is so proud of you. I am thankful for your heart. Unconditionally, Chris

Anonymous said...

Thank you so much for posting your expeience with Micah. My husband and i just had our beautiful son on September 25th and we found out the following day that our perfect little boy had downs as well. It really helped to read you reaction and know that ours was normal. I have to say that alot of my reactions, thoughts and story is very much the same. I was told by someone a couple of days after we heard our news that only Special Parents Are Blessed With Special Children, and it's very true.
Thank you again your story helped me, Candice

CC said...

Thank you for this beautiful post and your heartfelt honesty. I will save this post for myself and for others.

Keri said...

This post is why I feel like we know each other. Your heart is beautiful. Thank you for sharing this.

Annette W. said...

Thank you for sharing so personally.

The verse at the end was on the birth announcements we sent out for Meghan...the day or two before she went into cardiac arrest.

God's grace is sufficient for me...

Annette W. said...

My second time reading this...I may tear up, but I don't tire of reading your story.