Saturday, September 26, 2009
Sunday, September 20, 2009
Let me start by saying that I absolutely love Fall. It is my most favorite season. I have worked very hard these last couple of weeks to make sure that it remains that way. Because everywhere I look, everything I think of, takes me right back to where we were last year.
School had just started. I had just gotten back from my DMB Texas tour. Life was good.
Within a week there was the emergency blood work, followed by the urgent trip to the neurologist. It was a month of ups and downs. On the night of Open House, I came back to school from the neurologist relieved that we were told that Grey could be fixed.
The end of September and beginning of October would be full of tests, to find out what it was we were sure we could fix. There was an MRI that came back normal, a muscle biopsy, and a nerve conduction test. On October 30th we requested another appointment with our neurologist because Grey just didn't seem right. He saw us the same day. He admitted Grey to the hospital for "failure to thrive".
This overnight stay brought us more blood work, a second MRI, and a spinal tap. Our neurologist had to go out of town and left us in the hands of a colleague, whom he had a lot of faith in. But apparently, the colleague did not know that we were still looking for a fix. He saw in Grey things that I think we, including Grey's doctor, did not want to see.
He sat us down that Friday morning, Halloween, and told us that we would have some hard decisions to make. We had to decide just how far we would be willing to go.
To go? Go where?
Oh . . . how far we would be willing to go to keep him alive. We didn't even know what he had! But we were told chances of him being terminal were about 95%.
Bill and I looked at each other, knowing the decision we had made without even saying a word. We discharged him, took him home, put him in his giraffe costume and took him Trick-Or-Treating.
That would be the first and last time Grey was in the hospital.
That was last Fall, a year ago.
It seems like forever since he smiled at me in that stupid giraffe costume. He was so cute. He was so happy.
But he was so sick.
Wednesday, September 16, 2009
He had my smile.
Like the song says, "Oh and when the kids are old enough we will teach them to fly."
I know it always feels like it was too soon to teach him to fly. But it was the only way for him to break free from his broken body.
And although it hurts, he, and the legacy that he holds, was one of the best things we have ever done . . . you and me together.
Saturday, September 12, 2009
Friday, September 11, 2009
Monday, September 7, 2009
Friday, September 4, 2009
Again I am reminded of the gifts that Grey continues to give, both to me and others.
A grandma walked up to me today. She looked at me and smiled. Then she stepped toward me and hugged me. She started to tell me her story. Her grandchild was born on September 1st. She wanted to let me know, that because of Greyson, her grandchild would be healthier because of the benefits of Texas' expanded newborn screening program. She wanted me to know that because it was September 1st, she was honored that her grandchild would be one of the first babies screened for the additional disorders that Greyson's Law ensures.
As my heart burst with pride, it also broke, as I had to tell her that although Greyson's Law is effective since September 1st, the state has a year to put the program into place, having to recalibrate it's equipment. I gave her Grey's website and told her that there she could find additional screening through PerkinElmer. She hugged me and thanked me again, telling me that she hoped I realized how many lives Greyson's loss will change.
And although I realize that, realistically 150 babies could go undetected here in Texas from September 1st of 2009 until September 1st of 2010. So I have to make this very clear. If you live in Texas and are expecting, or know someone that is, you will need to do your own supplemental screening if your baby is born before 9/1/10. Click here for information on PerkinElmer's supplemental screening.
But as I type, I realize that maybe it won't be 150 children. That maybe, because of Greyson, someone who would have otherwise been uneducated about Texas' Newborn Screening Program, is now educated. I also realized that three months from now, if a woman gets pregnant, her baby will receive Texas' expanded newborn screening. That's exciting to me.
I just can't believe that this has all come about because of my Grey. He truly was a gift. And to others, many of them unknowing, he will give a greater gift. The gift of life.
Shine on baby boy. Shine on.
Tuesday, September 1, 2009
September is Newborn Screening Awareness Month. How better to start off this month than with the implementation of Greyson's Law on 9/1/09?
Thank you Texas! You have helped ensure the detection of an additional 150 treatable disorders a year, no longer able to harm our little Texans.
Thank you Grey! Your spirit will soar through all of them. I love you Little Man. You have done more in your 11 months, without even saying a word, than most will do in their entire lifetime. I am honored to be your mom.
This is an updated version of "Who Knew". We have edited it since the passage of Greyson's Law. We are calling it, "Lasting Legacy". Feel free to pass it on.