Monday, December 27, 2010

It is Well

Dearest Lily,

Daddy and I are taking you with us on a little date right now. I am blogging from his laptop while he drives:)

It's been a crazy couple of weeks, and...I am glad for a little break.

I was reading another blog last night...another mama was writing about her ultrasound, and expressing a bit of concern about the results. She mentioned breathing a sigh of relief when the technician said her baby's nasal bone was present..and it brought back a flood of memories for me. This time last year we were still waiting to see what the results of your u/s would mean in January.

The list was long..small nasal bone, small femur and arm bones, echogenic bowel, enlarged kidneys, possible av canal defect, small growth overall, fluid around the heart...how could we not have known, Lily? I guess because we honestly could dismiss each marker for one reason or another. Your brothers and sisters are not exactly at the top of height and weight charts..we've had an echogenic focus on the heart turn up on ultrasounds with other babies..your heart defect either resolved itself or God healed it..everything was explainable.

And without the amnio we just had no concrete way of knowing that you had Down syndrome.

But I think deep down...I knew.


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Your small, sluggish movements inside of me, your gentle kicks, the lack of any large sweeping movements that we had always seen with previous pregnancies...I knew something was different.

And you know what I felt when I read that blog last night?

I felt something was missing...in me.



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Grief.

It's gone, Lily.

I searched my soul for it- I tried to go there emotionally- made my mind go back to those long dark nights from a year ago, where I stared out at the moon while everyone was sleeping, praying to God for a calm in the storm brewing inside.

And I can honestly say...

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...it is well with my soul.

You are my beautiful and perfect Lily, and you have Down syndrome, and it is well with my soul.



And yes, we will face challenges together in the future- challenges and unexpected moments of realization of what this all means, and maybe even some hurts along the way too...

...but the grief is gone.

I have arrived in Holland, and the fear and the pain and the uncertainty of what this place meant a year ago is truly behind me...we're at home here now, and the beauty far exceeds anything I could have imagined a year ago.

Far exceeds.

My beautiful and wonderful and exquisite, perfect Lily- I would not change you for anything. I never thought I would say those words. But it's true.

God gave me a gift in you- and those words that He spoke to my heart a year ago, have truly come to pass.



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If you ask me for bread, would I give you a stone?
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It Is Well With My Soul

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

Refrain:
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life,
Thou wilt whisper Thy peace to my soul.

But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

Horatio Spafford




Loving you more than ever,

Mama oxox

28 comments:

Rochelle said...

YEAH! Love when the grief is a thing of the past and you can truly savor each moment. Enjoy your date!

Linda said...

Love your blog! And love this post. We have an angel with Down Syndrome, too. Her name is Lila and she is 4 years old. Looking forward to following your blog!

Becca said...

Beautiful words, beautiful photos, beautiful girl.

stephanie said...

oh this post just makes me smile!!!

I love it!!

Cathy said...

Ahhhh...beautiful, Patti!! So glad all is well with your soul. Lily is a blessed little girl and a precious child of God.

fckopp said...

What did I tell you? You never listen to your mother!! :>) :>)
You know I am teasing, don't you? I knew you would soon lose that feeling and be free to live and love and grow. A mother's love keeps growing deeper, stretches to the ends of the earth, no matter what happens, no matter how things turn out. MMM Kind of like God's love for all His children.

Enjoy your date and hug that little munchkin for Grammi and Papa. When you get home give those other munchkins, even the tall ones a hug too.

Rachel Bretbunner said...

I missed church yesterday but what I really really missed was seeing Lily! 2 sick kids kept me home Cooper and Hannah both woke up with fevers and runny noses.

cathy said...

AMEN, that could not have been more beautifully written
much love
xoxo

Lacey said...

Its so funny, after choosing Arina, and bringing her into our home, I look at her and think..she is a healthy, perfect baby girl. What else do you need. I guess I don't really understand the grief most people go through. For some reason, Jax having DS didn't bother me.

katekopp said...

Oh, Patti - so glad for you and your family!! She is such a huge blessing - it is all about the love and innocence. Thanks so much for sharing!!! Love, Kate

Runningmama said...

Beautiful post! I feel the same exact way about Emily, I wouldn't take away the Down Syndrome even if I could even if it means fighting leukemia...like you, I feel no grief, only love!

Cameo's Angels said...

Lovely words!! I just love the pics of Lily, I have missed them. I am glad you and your hubby are getting some time. Have a great week!

Kelly said...

Such beautiful words........such a beautiful and peaceful moment when that realization occurs!!

nicole said...

Patti ~ I think your peace came through the love you poured out for those other little girls like your Lily. God is never outdone in generosity and what a perfect gift to receive from Him for all your unconditional love for others.

Once again Lily delivered on cuteness!

Elissa said...

Patti- I could tell you were getting here and your grief was leaving you. I'm so glad you are at peace and just loving Lily more than ever. Your love for her already overflowed in your notes to Lily, but glad it's at it's fullest now!

Jenny said...

Posts you write like this ALWAYS make me cry!! I feel them, they are so similar to my own story. When I was pregnant with Russell I noticed his movements were different, slower, gentler, almost non existant...It felt different than my other four. When one of my ultrasounds showed enlarged kidneys but everyone including the Dr. said it was nothing to worry about...I knew...I just always knew.
And now I am finally at that place of peace. The days following Russells 1st birthday I finally let go of all those feelings, all that pain and hurt and fear...And you said it beautifuly Patti...
"It is well with my soul."

Callie said...

Great to hear, makes me smile. I love your song choice. You know the story behind it I am sure, it is about the loss his children on the voyage over from England. Amazing and powerful song, how we are not in control but accepting God's plans for us is so freeing. Lily is a blessing but she is also blessed!

Callie said...

I wanted to add how interestingly different everyone's experience was. Kate's ultrasounds showed nothing unusual. No increased folds, present nasal bone, arms & legs fine, no heart defects, she was extremely active, big kick and giant flips. no crooked pinky, no sandal toe gap I could go on and on. But believe me when she was born I knew, it seemed to me she had every characteristic-superficial that is, her health was outstanding. It just goes to show that Ultrasound are NOT remotely definitive and I know they don't claim to be either. The frustrating thing for me was after the fact people would say I had terrible triple screen odds and several marker blah blah and everything was just fine. And I was like well I had none of those and things weren't just fine for me. Sorry just rambling, you never know how a topic may strike.

teal915 said...

All through my pregnancy, I thought it was strange that Kamdyn didn't move and kick like my other babies did. She was just gentle and sweet from the beginning.

Cole said...

What wonderful insight- I'm happy for you Patti! Now order some tulips and enjoy the countryside! hugs-

Kelli said...

You brought tears to my eyes and chills to my skin....I know...I really do. Thanks for reminding me!

Anonymous said...

Beautiful post. I, too, remember the moment I realized my grief was gone. My daughter has DS, is 16 months old and is an amazing joy. I often tell others that while that poem re: Holland is beautiful, raising my daughter has been so much like Italy. As I type this she's trying to crawl out of her kid-sized chair to make a play for my computer cord while yelling "all done!" Every day is an adventure!

Tara said...

Oh, Patti, I choked back a sob reading this. I am so, so happy for you!!! Welcome to the other side. :)

Penny said...

love, love, love this, patti! i remember when you asked how long it would last....so glad it's gone for you! praise God! love and hugs!

Lori said...

This is one of my favorite songs - these hymns remind me of Pastor Campbell and then I miss Chandler soooo much!! I am totally jealous of all the hair Lily has - she looks so much like Mackenzie did when she was a baby - I was just looking at our wedding photos - I will show Kenz when she gets here - you could cut and paste the photos and never know - she is going to be a beaut just like her sister!!!

Anonymous said...

I have tears again after another post of yours- beautiful!! I am so glad that it is well with your soul. God has given you all a perfect gift. Lily is precious. I hope you all had a wonderful date. We take Benji with us on our dates too. Thank you for posting the words to that hymn- they sang that at my grandma's funeral. It always touches me to hear. Many blessings to you and your family- Cara

Brenna said...

Lily has THE cutest little ears! We have a Lilly too (with an extra 'L') and she gets such a kick out of your Lily. : )

Sherry Q. said...

Patti,
You bring tears to my eyes almost every time I read one of your blogs. I can't believe how much you and Lily remind me of Laura and myself. You, Lily and your family are SO amazing and beautiful!! You are extrememly blessed by our Lord above!! Thank you for sharing a little part of your life with us. Sherry