Tuesday, November 25, 2008

The Lord is close to the brokenhearted, He saves those crushed in spirit.
Psalm 34:18

We found out last Thursday that a genetic test run the last time Lilah was hospitalized came back positive for an abnormality. This abnormality, which was most likely spontaneous at conception, has caused a deletion of a portion of one of her chromosomes.  As explained to us today at the genetic counselor, this "altered" DNA is present in every cell in her body and accounts for all of the problems with Lilah's health, and many more that will present as she grows.  Children with this specific (un-named) chromosome deletion suffer from moderate to severe impairments in nearly every area of development and life.  
It has taken us these last several days to gather the strength to both absorb and share this terrible news.  We are absolutely brokenhearted...crushed in spirit and praying fervently for His saving grace.  We are grieving all the plans that we had for our daughter and her life and looking forward with trepidation to all this diagnosis holds.  We feel strongly that we owe it to Lilah to hope for the very best and pray for a miracle, despite her grim "prognosis."
Certainly this looks nothing like the life we thought she would lead, but we are still confident that her disabilities are not an accident. She is a child of the Lord, He loves her even more than we do and He allowed this and has a purpose in it.  
His promises are the same for Lilah-

"For I know the plan 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

Please pray for us, for peace, hope, and strength and pray for Lilah's life to be full of miracles.

-Gina & Paul


Anonymous said...

The Lord truly is close to the brokenhearted...but what a testimony of your thankfulness even in the midst of such hard news.

She is so beautiful and looks just like you Gina!

Praying for miracles and His ultimate peace on you all.

notes from em said...

We are praying for miracles each day.
Thank you for allowing all of us into whats in your head and your heart.
I am hopeful for a redeemed earth so that we can all be whole together.
love you sweet friends.

oh, and that bow is so CUTE!

Johnson Party of seven! said...

Oh Gina and Paul-
I am so sorry abou this latest news. Everytime we get bad news, I just focus on the fact that Hutton brings us such JOY and no news will take that from us. We enjoy every moment with her and will as long as the Lord allows us to keep her. Hang in there. I know Lilah brings you JOY as well and nothing will change that. I would LOVE to meet you Gina and your sweet babies. Maybe after the holidays?

Praying for you.
Jill Johnson

Jessica said...

She is just so sweet and precious in that photo. I am sorry to hear this news. I am thinking about you all and praying. Thank you for sharing. xoxo

The Leonards said...

We love you so much, sweet Lilah. It is our joy and privelege to continue to intercede and lift you up to our Great Lord. He rejoices over you...
And, of course, I love the bow too!

Anonymous said...

We love Lilah even though we have not had the chance to meet her yet. God tells us we are made in His image. May His wonders never cease.

Love, luke and kelley doiron

Anonymous said...

Gina and Paul,
God is truly close to the brokenhearted and He will show Himself mightily to you as you walk this difficult path. I trust He will continue to show His glory in amazing ways in and through the life of your family. You are in our prayers and we would love to know of ANY way we can love on you right now! Don't be afraid to ask for what you need...we are not meant to walk these paths alone!

Beth Hamilton

christy bonifacio said...

Dear Gina and Paul, My heart is just broken for you... Although I may not comment as much you are still in my thoughts and prayers. Know that God is still God no matter the circumstance. He is the God of miracles. He loves your family and Lilah with an unfathomable love.

Our Princess said...

I'm so sorry to hear your news. I will definately be praying for the things you mentioned specifically. Thank you for sharing you heart. Lilah is so blessed to have you for parents. Btw, Liz sent me the SWEET video clip of Lilah. She is an amazing little girl.

Anonymous said...

Oh Gina I so sorry to hear this. This has happened for a reason and you and Paul were chosen to be her parents. You will be her gift, and her, yours. Please know that all of you are in my prayers.
xxxxxxx, Sarah Payton

Elizabeth Myatt said...

Thank you again for allowing us to walk through this with you. I always feel so encouraged after talking to you...seems like it should be the other way around. You are such a blessing me. Hope you get some rest tonight.

Anonymous said...

We will continue to pray for a miracle for Lilah, but one day (soon, we hope!) we will ALL have those perfect bodies in heaven! I love the Christmas picture--such a reflection of Peace and Joy. Love and prayers, Donna Willis

becky K. said...

Just wanted you to know that you have two churches in Arizona faithfully praying for your Lilah. My family has really been taken by her story and is feeling led to pray. I'm sure Indiana has got her covered as well!! I'll keep the prayer chain going sister. You are loved.
Becky Kraslawsky

Cade and Cora said...

Oh Gina I just checked you blog for the first time in months and I am praying, praying, praying without ceasing for your precious baby girl and family. Your hope and attitude is so encouraging and so completely correct! Sending big hugs and prayers your way!
Mandy Garola