A Journey of Grace

"Even in the valley, God IS good."

Grace was born at 23 weeks in September of 2006. As a result of her extreme prematurity, she has hydrocephalus (VP shunt) and cerebral palsy. After 126 harrowing days in the NICU, she came home. Overcoming all the odds, she learned to walk, talk, and play like every child. On November 16th, 2009, our lives took another shocking turn. Gracie's shunt failed, and she suffered from a massive stroke. After 13 days in the PICU, 7 days in 1600, and 6 weeks at a rehabilitative hospital, Gracie is once again home. Now, we face SOME of the day to day challenges of parents with a brain injured child -re-learning, therapy, illnesses and seizures. Thanks for joining us on our journey!

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."

Wednesday, February 24, 2010

Well, we had to make the trip to Rochester again this weekend. I am always glad to get to stay at the RH and see the people who were there before. It's amazing to see all of the progress that can take place in under 6 weeks! Little NICU babies that were on vents and under 3 pounds are now getting ready to go home this week. One mother who's son has brain cancer was still there...but her son was there with her instead of in the hospital. However, there was a sad spirit in the house this time. See, the people at the Ronald McDonald House really become like a family...and this week we lost a member of that family. Remember this post?
Lee is the little boy who had been there for 8 months. His family and ours are actually from the same general area, about a 10 minute drive. Our families got close. Gracie and Lee were actually at the RMH together for about a week, and though he was too sick to get up and play, they got to know each other. He would always get a big smile when he saw her, and she often asked about him when we came home. "Where Little Lee goed?" she would say. Then last week we got the news that he wasn't doing well. Infection had set in to his immune suppressed little body and his kidneys had shut down. There was nothing left to do, so his mom and dad did the only thing they could. They brought him home...to his house...his sisters and brother...his dog. In the last week they gave him every wish they possibly could, including a birthday party. Our family went to the party, and Gracie got to see little Lee one last time. He was in a coma, laying in his bed. It was quite obvious that he was in his last days on Earth. Gracie went to see him and said "Waked up, LeeLee..." but obviously he couldn't. I told her Lee was very sick and she said "no he just asleep." We whispered, "Jesus loves you" to him and then we had to let him rest. He was so peaceful...and Grace was so sweet. He passed away on Sunday morning. I am so sad, that at 3 years old, my baby girl has already said goodbye to a friend. I am so GLAD for God's grace. I can't be 100% sure ( nobody can)...but God has given us peace that Lee is in Heaven. What a day it must have been for him, to go to sleep in the same pain he had been in for over 3 years, his lips cracked and bleeding beyond anything I have ever seen...and to wake up, whole, painless, with JESUS. With Jesus. Sometimes, I just want to sit around for a whole day or two and thank God for Jesus!!

Gracie did have appointments this week in Rochester. She saw the rehab doctor at St. Mary's and they said she is doing fantastic! She has to go back to see them in 6 months. I wish I could have videotaped the reunion with her therapists and nurses. She was running all over, laughing and smiling, she kept asking "whatcha doing here?" like she thought they were all supposed to come home with her last month.

She has another ophthalmology appointment tomorrow. This one is right in Elmira, so it will be much easier for- me at least. Please pray that it goes well. Thanks everyone!!