The Lord is close to the brokenhearted, He saves those crushed in spirit.
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