We wanted to let everyone know that her surgery was postponed because they do not have any room in the ICU. We are disappointed. It is so hard to came here and then just have the rug pulled out at the last minute.
Mikey is so strong. This husband and father amazed me today with his Faith.
I am...well lets say my strength does not manifest itself in the same way. I had one of those spiritual tantrums when we got back to the ronald mcdonald house. I can't say that I am proud of it (pretty sure a few people on our floor heard me), but it was honesty with God. I am one of those fools who actually has the nerve to be mad at Him...and yet He still accepts me.
Today was spent in pre-op. She was a little warrior.
Five failed cath attempts (The nurse hounded her across the hospital for a urine sample, and she was not above "the warm water trick", which didn't work)
Blood Sample
EKG
Endless chats with anesthesia, etc.
Two exhausted parents
A hundred blessings along the way
Some of it was scary, but it also pushes us to remember that God is truly in control. To know that our God, who listens to our every cry, is also the Almighty God?
Awe.
The only thing that could make it better is if someone could figure out how to enjoy a kiss and a thumb at the same time.
We are staying at the Ronald McDonald House! We can stay as long as we need to. We are so thankful.
Although Elina's still unsure about Ronald...
Can't blame her
Tomorrow is the big day. I am not sure how much I will post, but I will let everyone know how she is doing when I get the chance.
A few months ago, when I found out that Elina had Down Syndrome, part of me was temporarily ripped from my body. I heard the doctor telling me she was beautiful, but they thought there was a problem. Once the words Down Syndrome hit you, like a wall of crushing wave, you kind of black out. You are hearing words and seeing a baby. Its just wrong. There was no moment to bond, to breathe, and kiss before my world flipped and scrabbled into chaos.
and yet... I loved.
Through the fire of pain a deep bond was forged. Three hearts were fused. My heart was broken, but not in vain. It didn't happen overnight, but bit by bit, we moved towards wholeness.
I am still moving towards wholeness.
We snuggled. Sometimes thats all you can do. Sometimes thats exactly what you need.
We sunk into each other's hearts.
Our prayer was that we would see her the way God sees her.
I see.
Do we still struggle with Down Syndrome? Yes. Sometimes little moments trigger fears that lay in the future.
We were given some precious advice at the beginning. Take it one moment at a time. Enjoy what you have.
My walk with God isn't as simple to say that I just praised and trusted perfectly all the way. I wrestle with God, daily. I have moments when I question whether he is listening, why he lets things happen when I feel like I am already overwhelmed, what he sees in me.
One person who I believe was sent into my life at that time was Kelle Hampton. God works in whatever way he knows to be best. Sometimes its through a blog. Because, I have never met Kelle, but when I was sifting through information on Down Syndrome back then, I stumbled upon a blog that opened my eyes to the beauty of the small things. Those small things gave me hope, and added up until I found I could stand.
Kelle has a Daughter with an extra chromosome. Nella is a beautuful girl, about to turn two. I wanted to share with you a video that Kelle Hampton has put together to celebrate Down Syndrome and to call us to give to the National Down's Syndrome Society in honor of those in your lives, and the lives of those around you who share this extra chromosome.
Check out her site at www.kellehampton.com
I never gave much thought to Down Syndrome before it was born into my life. I hope that knowing Elina helps you to understand just how loved and beautiful these individuals are.
We will be heading to Kansas City next sunday. I hope to find some time to share more about that. I will be sending some pictures from KC before her procedure.
Thank you for walking with us, and taking a moment to hear our story.
Bubbly Soul
By Claire Imsen
Down. Down is up. Down is up when its her that's down.
She is an avalanche that covered all we know
consuming it all with joy
like snow
Have you seen half-moon eyes crinkle up on a face weaved in light?
Have you heard heavenly chirps dancing, filling the sky?
Her soul is made of bubbles, it won't stay on the ground
She is the wings of my heart
She is made of fire, sparks, butterflies
When the wind kicks up her head flies back
she licks the breeze
her sparks catch fire
The abundance of her DNA rearranged mine
When the world turns an eye and proclaims her down
This space is to share our journey that is life. Life with Elina. Life as Christians. A way to invite our loved ones closer into our walk.
One of the catalysts for me writing at this time is Elina's upcoming surgery. She was diagnosed with Congenital Heart Disease shortly after she was born. Our doctor heard a heart murmur and sent us to specialists. A handful of tests and one surgery later, they have found an "Atrial Septal Defect", which causes blood to flow both ways in her heart. She will be having Open Heart Surgery at the end of this month, January 31st.
I sit here and contemplate all of the things I could say. I want you to know that Elina has saved me in so many ways. I want you to know that my husband and I have grown so much during this time in our lives. Know that we believe in a God who makes beautiful children like Elina and delights in every thing they are. He has never left us. He never will.
By the way, Elina and I practiced standing up while holding onto the side of the crib. She did it for a few moments on her own. Not long enough for me to run to the living room, find an SD card, and switch to an acceptable setting- but I tried to capture the spirit of the moment.
Here she is, way over my attempt and ready for a bottle.
I know that there are so many people who are thinking and praying for us. I hope to keep you updated through this blog about Elina's surgery and ongoing recovery.
