Monday, July 18, 2011

treasured places

Dearest Lily,

It's late Sunday night, and you are sleeping on "the green chair", as it is known in our family. It's the coziest chair in the house, an overstuffed and oversized affair with an equally cozy ottoman for tired of the places you like to nap the best, and your siblings' favorite chair to curl up on with a good book every day.

Once when Mama and Daddy were out of town, we called home to check on everyone. All of your brothers and sisters were doing fine, but Noah was a wreck and hardly consolable. I asked him what I could bring him home to make him feel better... army guys, legos, his favorite candy? No promises of treats or toys could cheer him up. I pressed the ear piece closer to my ear trying to comfort him and distinguish his words through the hiccuping sobs that made their way across the miles. "I just want to snuggle with you on the green chair when you come home!" he choked out. I guaranteed him one hour of uninterrupted snuggle time, and somehow he made it through the rest of that week holding onto that promise.

So there you rest as I type, your brother Jackson curled up beside you on that treasured green chair, while I journal away. It's funny how sentimental all of us are about things like that, and how certain pieces of furniture or places or even pieces of clothing trigger memories. Just walking into a hospital room last week to visit a friend and inhaling that clean, sweet smell of the doppler gel absolutely transported me back in time to all of my labors and deliveries. Sorting through your newborn clothes the other day and putting them away for good brought back a flood of memories as well...I held your soft lavender sleeper, sized just right for a preemie, and instantly I was that new unsure Mama again, wondering what the future held for her little girl. Tucking those onesies and jammies away was like closing a chapter in our lives on this journey called special needs. We've come so far....

The other day I was driving through the parking lot at Safeway, a store I shop at on a regular basis. And yet somehow this time, when I turned the corner to park our van, I had one of those deja-vu moments that felt so eerily as if I were repeating an event I'd already lived through, detail for detail.

And suddenly I was 5 months pregnant again, running to the grocery store a few hours after my level 2 ultrasound. Caleb was in the car with me at the time, and as we looked for a parking spot we saw Mrs. Dort, a mother from your siblings' previous school. Cynthia and I were on a first name basis, but because she had taught so long at the school it was so hard to think of her as anything but "Mrs. Dort".  Her daughter, Kari, attended that small private school with your brothers and sisters for many years...and Kari had Down syndrome. Seeing her mama across the pavement almost felt like a sign at the time...we were still unsure about whether you had Down syndrome or not and had just that day opted out of an amniocenteses.

I remember telling Caleb to go get a grocery cart, because I didn't want him to overhear the questions I had for Mrs. Dort. Tears stung my eyes, and I swallowed a giant lump in my throat as I called out to her. It was a conversation I wanted to have, had to have, and yet I was dreading it all at the same time

Sometimes I'm strange this way, Lily. It's like I think life is a big chess game, and if I don't do something- it will somehow prevent me from experiencing something else. At that moment I felt as if just talking to a parent of a child with Down syndrome was going to somehow seal the deal for me.

I told you I'm strange!

I did the same thing with the Down syndrome pregnancy boards on  It was as if going there would somehow make something true, and likewise, avoiding those boards might bring me a baby without that extra chromosome. Completely unfounded and illogical, but there you have it.

So on that bright and sunny September afternoon, as Mrs. Dort and I talked about babies and Down syndrome and Kari and the future...I distinctly remember the feeling of being prepared for something. And despite the inward denial of my soul- because I most assuredly did not want to embrace what that "something" might be- God was nudging me towards His plan for our lives, gently prying back the fingers off my eyes and whispering look here.

I remember Mrs. Dort wisely sharing that God gives you the grace to go through things you never thought you could. She said something that seemed impossible to me, given my hopes and dreams and expectations for a "perfect" baby girl. She said she'd thought about her daughter and all the joy that she'd brought to their family, and how unique and beautiful she was...and she'd asked herself this question: if she could change Kari- take away the Down syndrome- would she do it?

And Lily, to this day I can see Mrs. Dort's lovely face, smiling genuinely and blinking through tears and sunshine as she told me she could never change her daughter.  "She wouldn't be
Kari," she said, her eyes locking with mine and her love for her daughter as contagious as her smile.

So here we are almost two years later, and I'm asking myself: would I change you if I could? I've asked that question a hundred times it seems. Just as hypothetical and perhaps as illogical as my giant imaginary chess game of life, and yet there it is as well.

And although I would never wish a life of struggle or health concerns or cognitive delays on anyone, most especially my baby girl, I can't help but answer that question the wouldn't be Lily.
If I could wave a magic wand and take away that extra chromosome, I honestly wouldn't take the chance. Because who you are and how you have changed us has given me more blessing in life than I deserve, and it won't be til Heaven that I fully understand how all of that works together. In Heaven you will be whole- as I will, and
ll of us fallen creatures who trust in Him, who made us in His image.

And maybe I don't have all the answers to who and why and how He made us. But until we get there, I'm going to cherish each moment loving my sweet and perfect Lily, and treasuring the wonderful gift that you are.

Loving you forever,

Mama oxox


Heidi Ehle said...

Even after I came to a moment of acceptance of Lydia's extra special chromosome, I still avoided reaching out to other mamas. I think it was a sign of a shaky balance in my mind of what I could accept. I could take the fact that Liddy had DS, but I wasn't ready to join the "club" yet. It made it too real.
But...I am glad that I finally reached out. (And I think Lily was the first reason I did..and you were the first person!) I already had an amazing support system, but I have made real friends here. And I don't know how in the world I would have made it through the last 5 days without those friends who have stood in my shoes, looked their worst fears dead in the face and made it through to the other side. As well as those friends who haven't, but who love this baby girl and pray for her constantly. Those prayers mean as much to me as the friends who lift her up!
Love ya, Patti (and gorgeous Lily too!!!)!

Anna Theurer said...

Beautiful, heartfelt post Patti. I get that question too, if you could change things, would you take the Ds away? I always no, because then she wouldn't be Ellie. Do I wish that she didn't have health problems. Of course! However, if you change things, then she is a different person and I love my Ellie the way she is. She is perfect and created in God's image

Jenn said...

I identify so much with what Heidi has shared and you too Patti. We did have some questions when Jack was in the womb but we didn't want to accept it. Thought it would never happen to us or a baby we conceived. Even after Jack was born, it took me a long time to accept that Jack had DS and even then I didn't want to reach out and join others. I still don't think I can articulate why yet. But now that I have started blogging and reading other blogs like yours there is real healing taking place for me. Lily is just so lovely and beautiful. Jack is such a joy. Why change something so wonderful?

cathy said...

simply beautiful & straight from the heart....


nicole said...

What a great memory of that "chance" meeting with just the person you needed to see.

Love Lily's little ballet slippered feet!

j*e*n said...

I still have questions and love talking to other moms who have a child with DS. There is still a comfort in it for me. Probably explains why I read so many blogs, too. That, and our kiddos are so darn cute! :)

JC said...

Beautiful post Patti. Mine and Brads best friends who just had a baby with Down syndrome said the same thing...That all through the pregnancy they felt something was going to happen, and every doctors appointment and prenatal class they would ask questions only about Ds...They never understood why, until their baby was born and they found out he had Down syndrome. Mothers intuition is very strong.

Unknown said...

yet again a beautiful post! xxxxxxx

Jill said...

Absolutely true. Absolutely beautiful.

Anonymous said...

Love this Patti. Such beautiful and true words. I can relate to all of it...and yes, I rationalize things in that funny way too.

Kenzie Rice said...

i miss my sissy SO much:(:( cant wait to kiss her! profound words as well mama. as always.