Thursday, April 30, 2009
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Monday, April 27, 2009
Saturday, April 25, 2009
Wednesday, April 22, 2009
The Senate Committee on Health and Human Services has agreed to hear Grey's Senate Bill. The following link is to the Senate Committee on Health & Human Services. Please email the members in support of SB 1720. Please remember to place "SB 1720 - Greyson's Law" in the subject line.
In addition, the Public Health Committee will vote on Grey's House Bill early next week, if not by the end of this week. The following is the link to the Public Health committee members. Please email them asking them to vote yes for HB 1795 - Greyson's Law.
I cannot thank you guys enough for your support. The fact that these people even know who we are is a testament of your love for Grey. They have been flooded by your emails. I see Grey's spirit in all of you. You all are helping us save the children of Texas through expanding our newborn screening. My family is just the vessel.
Tuesday, April 21, 2009
I cannot thank the Public Health Committee enough. They were wonderful people. Rep. Dr. Zerwas was amazing. I don't think we could of had a better person on the committee, helping us with every word that came out of his mouth. Before today, we didn't even know who he was. Overall, I think the session went very well and we have been told that if Grey's bill passes, it has already been allocated the funds. They should vote on it this Thursday.
Thank you to Aida Benson and her family for testifying. I know what it's like to have a terminal child. It would have been much easier for you to not be a part of today. It is our blessing that you were.
Thank you to all of our friends and family, whether you were there or there in spirit. I can't tell you how many text messages I received this morning.
Thank you to Jenny Hoff and her cameraman Chris. They taped our part of the session and interviewed us afterwards. It will run tonight on KXAN New 8 in Austin.
Monday, April 20, 2009
Sunday, April 19, 2009
Tuesday, I will have 3 minutes to speak to committee members. I will have 3 minutes to give meaning to Grey's short eleven months. This is what I have come up with. Thanks to Quinn, Slough, and McInnis for making sure it was the best that it could be. Please leave me comments on what you think. This has to be perfect.
I am Nicole Morris. Greyson Morris, who died from Krabbes Disease just six days shy of his 1st birthday, was my son. However, he could have easily been Greyson Kolkhorst, Greyson King, or Greyson Coleman (last names of committee members). Then it might be you, in the midst of Grey’s loss, right here, right now, having to ask for support of HB 1795, which will prevent this tragedy from happening to future Texas families.
Like me, Greyson was a teacher, his lesson costing us deeply. Through his loss, we educate others of a broken system: a system that allows treatable disorders to be ignored; a system that allows our babies to become disabled; a system that allows our babies to die.
The chances of my husband and I being recessive carriers for two totally unrelated disorders are astronomical. In working with Hunter’s Hope, a foundation that helps support families affected by Krabbes and other Leukodystrophies, we have come to learn that we are the only family known to have been affected so drastically by newborn screening. We are the only family who has had one son saved and one son lost due to newborn screening, or lack thereof.
Although newborn screening between states is inequitable, it’s inequality between brothers is much greater. When my son Seth asked me why his disorder was so much more important than his brother’s, important enough to be screened for, I stood dumbfounded. Thinking quickly, I told him that there was a time when PKU was not tested for, that there were those before him who had to sacrifice, so that he would not.
Greyson can be that sacrifice to bring about testing for more treatable disorders, if you let him.
Texans are proud people and have fought battles of all kinds. This is a must win battle we are fighting now. As an educator of special education students, I continually see the need for constant changes that will enable our children to have opportunities in life that were once dismissed. The motto, No Child Left Behind, is not just for the educational sector of society. As a mother, I am now fighting the most precious and important battle of my life, fighting hard for the rights of newborn children so that not even one of them will be left behind. I refuse to put a price on any child and Greyson is no exception. Please don't allow Grey's Gift to be left behind. We can't ignore our children.
Passing this bill can never bring my son back to me, but knowing that his loss will save the lives of other Texas babies will make the pain more bearable and give meaning to not only his life, but also his loss.
Due to ignorance, Texas’ Newborn Screening Program has cost us dearly. As parents, even as a Special Education teacher and a nurse, we were unaware of the shortcomings of this system. My hope is that you, too, were just unaware and uneducated that this system was failing the needs of our children and parents.
Consider yourself no longer unaware, no longer uneducated. Greyson has taught you as well.
Wednesday, April 15, 2009
Monday, April 13, 2009
Sunday, April 12, 2009
Here's the link to the story:
Saturday, April 11, 2009
Friday, April 10, 2009
Thursday, April 9, 2009
Wednesday, April 8, 2009
Tuesday, April 7, 2009
Sunday, April 5, 2009
As 11:00 PM approaches and sleep does not, I am overwhelmed by the need to just be close to you. Sometimes it's like I can feel you, but I just can't touch you.
The only thing I knew to do was to go into the kitchen and make some mashed potatoes, with brown gravy, just like you liked them. I type to you as they cool.
I miss you so much Grey. So much.
Forever Your Mom
As I try to find a new normal, there are definitely some things that get put on the back burner. One of them is laundry. Not that the laundry doesn't get done, it does. It just doesn't always get put away. Where better than to stack folded laundry (yes it does get folded too) than the kitchen table? Don't ask how often we eat at the dinner table.
But we use to.
So, today I decided to put away all the laundry. I started with Luke's. Then did Seth's and made my way on to Ry's. Proud of myself I walked back in the kitchen to admire my work, only to find Grey's high chair staring at me. I cried.
Ceci and I drove all over town looking for that stupid high chair! I loved it, not because it was fancy or expensive, but just because it was so "Grey". It has a jungle print, colorful and happy. And when he sat in it, he thought he ruled the world. No longer did he have to sit in his bouncy chair on the floor as we ate. He was a big boy, able to eat big boy food, and feed himself. He would slap his tray, just to get our attention.
The video above is of one of those times. It's not great quality, taken on my cell phone. But looking back, now I can see the signs, his head tilted to the side. One arm moving, but the other stuck beneath his tray. His intelligence and his personality still there. Thank God we never lost that.
This video was taken last June. It would be one of the videos we would later show our neurologist that would land Grey in the hospital for failure to thrive. I guess the difference in Grey from June to October was apparent to others but not us, a nurse and a Special Ed teacher. Denial.
How do you go from watching your son feed himself in his high chair in June to an empty high chair since December? And how do you even try to move that high chair out of your kitchen even though it's April? But how do you eat at the table with it still there?
I should have just left the laundry.