Saturday, January 04, 2014

Let's Talk Elephants

I feel like there is an elephant in the blog.  It is a super cute tiny elephant.  You may or may not have even noticed it is there.  But there is an elephant.  And maybe we should talk about it.

A kinda funny thing happened when we were in the Emergency Room with The World's Cutest Baby for her jaundice.

We talked to the nurse, we had blood drawn, we talked to more nurses, and finally the on-call pediatrician came in to examine her.

At first he said The Greatest could just hold her while he took a quick peek.  But as he looked at her, he changed his mind and he asked The Greatest to put her down so he could get a better look at her.  He looked and looked, and his face became more and more concerned.  You could see his body filling with tension. The more concerned he looked the more terrified I became.  We were only there for jaundice.  Did he see a larger problem the other Doctors had missed?

Finally he looked at our sweet sweet baby girl lying on the bed sticking her tongue in and out, and he asked us "Does she always play with her tongue like that?"

"Always" I laughed "it is her favorite toy."

"That's just part of the Down Syndrome right?"  The Greatest added.

With those words all the tension drained from the Doctor's body.  "So she has confirmed Down Syndrome?"  he asked.

The poor man had been trying to figure out how to break it to us that our beautiful perfect baby girl has Down Syndrome.

He really should have looked at her chart before he came in.

But yes.  Our beautiful perfect baby girl has Down Syndrome.

We've known since July.

At the time of diagnosis my world exploded.  All my hopes and dreams of my child and who that child would be were shattered.  My life as I knew it was gone.  I was being handed a challenge that was unwanted and unwelcome.  I felt devastated.  And angry.  And guilty.  My body had failed.  First the miscarriage, and now I was growing a "broken baby."

I told trusted friends, and they looked at me with sadness.  They used the word "amazing" a lot.  Families who have Down Syndrome children are amazing.  My daughter was going to be amazing.  I was so amazing to have such a special child.

I started to hate the word amazing.

It felt like an accusation.

If only we were ordinary parents.  Then we would be getting an ordinary baby.

But no, my baby was going to be "amazing."

The well meaning words of encouragement felt hollow.  I was on one side of the fence staring at the desolation, a post apocalyptic wasteland.  While my loved ones were on the other side of the fence, in a place untouched by the devastation, telling me they were sure I was going to love my new home, a home they would not have to live in, a life they would share from the sidelines, but not have to live every second of every day for the rest of their lives.  Their words hurt for reasons I still can't fully explain.

I cried.

A lot.

The Greatest just shrugged and said "She's going to be my baby."

How I love that man.  He really is The Greatest.  He allowed me to be weak, and to be angry, and to have ugly soul crushing emotions.  He gave me space to feel my ugly feelings, and then he would talk me back to reality.

She was going to be our baby.

We know what to do with a baby.

The rest we would figure out as we went along.

I will admit this post is very different now that I am on the other side of my pregnancy from one I would have written while I was still pregnant, surrounded by fear of the unknown and ugly emotions.

My baby is no longer a scary life changing event.

She is simply my baby.

I feared that I would always look at my baby and see DOWN SYNDROME.  And I did at first.  Just a little.  I would hold her and take stock of all the physical features from Down Syndrome.  The fold of her eyelid.  The thick tongue.  The extra skin at the back of her neck.  The bell shaped abdomen.  The extra space in her toe.  Over and over I would check off this mental list of her differences.  But if I was going to reduce my daughter to a collection of body parts I had to notice more.  I also had to see how beautiful her eyes are.   And how cute her ears are.  And how she has the exact same lips as Sweet Pea.  And how dainty her hands are.  And the cute chubby folds in her thighs that I love so much.  And how I adored the blond fuzz on top of her head.  Over and over I checked off my rapidly growing mental list of things about my baby until I no longer saw Down Syndrome.  The body parts melted together to form a person.  My daughter.  I just saw my daughter.

My beautiful, sweet, perfect daughter.

I would not change a single thing about her.  I no longer wish away her extra chromosome.  Without it she wouldn't be who she is.  And I love her, just as she is.  Just as I love my other children.

It isn't all easy.  We've had more Dr visits this month that the other children have had in the past three years combined.  Every visit seems to end with a referral to a new and exciting specialist.  I'm having the hardest time navigating the murky world of government services.   Pumping breast milk to feed her is a full time job and exhausting.

But we'll figure it out.

And it turns out everyone was right.  I don't know if our family is amazing, and I know I don't feel amazing.  But my daughter, my beautiful perfect daughter, she really is amazing.


Unknown said...

The worlds cutest baby could not have asked for a better family to be born into.

katie metzroth said...

A baby can pull parents apart. any baby. lack of sleep, the pressure of a little one. I'm so glad ya'll are coming through the journey of another baby even closer together. :)

Tam said...

Glad you brought the "elephant" into the light. I could tell but I figured you'd mention it when you were ready. She is amazing. I know a few Downs kids and one of my favorite things I've heard said about them is that they have one more chromosome put in and all of the bad personality traits taken out. So true. I already love Squishy and wish I could squeeze her! I hope you continue to blog so we can keep tabs on her (and, of course, your knitting).

BitterKnitter said...

Oh, Mama, I am so glad you brought the elephant out! I was kind of like that pediatrician, tense in what I could see. Squishy is beautiful. She, like all of us,is imperfectly perfect, but, she is special; she is surrounded by more love than most of us would ever hope to witness! So, you bought tickets to Hawaii and ended up on an Alaskan cruise. It is no less beautiful, and I bet you wouldn't change it for the world! Much love to you and your family!

UmmRania said...

I dont think I have ever commented here but I am a reader of your blog and really wanted to make sure to comment on this beautiful post. What an awesome family for any childto be born into, your beautiful daughter is blessed to have you as you are blessed to have her. I wish you well in your future, and lots of patience and strength.

Lauren Burnett said...

Squishy is an amazing baby but also just a baby and I'm so glad she's part of the "Yarn Baby" club. Your yarn friends might not be able to relate to what you're dealing with, but never forget that we're happy to help with whatever you need (babysitting, etc.).

Lauren Burnett said...

Squishy is an amazing baby but also just a baby and I'm so glad she's part of the "Yarn Baby" club. Your yarn friends might not be able to relate to what you're dealing with, but never forget that we're happy to help with whatever you need (babysitting, etc.).

darlene mcleod said...

When you mentioned that she wasn't latching and I looked at your photos I suspected that elephant was there. She is gorgeous and perfect, just because she is. And you and The Greatest are wonderful, awesome parents. She's lucky to have you and you are blessed to have her.

I'm sure you've already discovered this blog, but on the off chance that you haven't, Kelle Hampton's blog Enjoying the Small Things tells her daughter Nella's story. She's three now, and absolutely splendid.

Candyce said...

Your family is beautiful! There is so much love for this new little daughter.
I just came across this on the internet and thought it would be encouraging and interesting to you:

With my last child we were told he had DS when I was pregnant but he didn't. We went through the emotions though.

There was a book out recently that interviewed a Mom with a child with DS. She said their daughter had brought so much happiness and helped them see things in a whole new way that they wouldn't change her for anything--except if she wanted the change.

Thinking of you and your family. And congratulations!