Thursday, April 30, 2009

Last Time I'll Ask, Maybe


Although we were promised that HB 1795 would be voted on by Thursday, we have yet to receive word that it has. I do take comfort in the fact that Grey's Bill is one of many that hasn't been put to a vote. Last I heard, Madam Chair was told that her committee was holding up the show by not putting Bills to a vote. As far as I know, they could still be in committee tonight playing catch-up. But, until my phone rings with confirmation that Grey's Bill has been passed through, I have to treat it as though it has not.

So I will ask, hopefully for the last time, for you to call Rep. Kolkhorst's office and ask her to put HB 1795 to a vote and support expanding Texas' newborn screening program. Her number is (512)463-0600.

I will be in Houston and Dallas this weekend following the Dave Matthews Band, but be assured that as soon as I know, you all will know.

Wednesday, April 29, 2009

Eeyore

I know I promised yesterday to fill everyone in on Grey's Senate hearing today, but in the midst of this fantastic news that we have all worked so hard to achieve, I find myself lost for my little man. At times I cannot even fathom the fact that this law, Greyson's Law, is only here because my son is not. I think it struck me yesterday, after the ayes far outweighed the nays, as the gavel struck the table, as everyone else moved on . . . everyone but me.

Tonight I feel like Eeyore, and until my cloud lifts, I'd like to wait to talk of our success, until I can give it the credit it deserves.

Thanks for understanding.

Tuesday, April 28, 2009

SB 1720 - Greyson's Law


SB 1720 passed through the Committee of Health & Human Services today. It now goes to the Senate floor.


Incredible!


I am too overwhelmed and tired to go into detail or even start to thank people. I will write more tomorrow. I promise.
Below is the link to the Senate hearing. Click on April 28, 2009 (Part II). Fast forward to 04:02:16.

Monday, April 27, 2009

10 Babies A Month


In reading HB 1795's fiscal note I found that 54% of babies in Texas are born into the Medicaid system. With the expansion of Greyson's Law, 66 of these babies a year will test positive for one of the disorders we are adding. 66 babies a year! Now nearly double that to include those not on Medicaid. That's an average of about 10 babies a month that are being disabled or even dying due to lack of newborn screening in our state.


Please email Rep. Kolkhorst and ask her to vote yes for HB 1795, Greyson's Law. The numbers speak for themselves. What happened to our family should never happen to another. Her link is below.


Saturday, April 25, 2009

Butterflies & Oatmeal

Dearest Grey,

I have seen your presence in a gazillion things the past few days.

Since your loss, butterflies have seemed to be your way of getting my attention, starting from the minute we picked out your urn, engraved with butterflies. Ceci gave me a book. The main characters were butterflies. There were butterflies on her birthday card, and pictures of you in it.

On Friday, a friend came to our school to be in a few meetings with me. I hadn't seen her since before I lost you. We made it through the morning and right before our afternoon meetings started she handed me a bag, leopard print like your room. In it was a box. I opened it to find a beautiful glass bead she had made, a bright blue butterfly. There is a cool story behind the bead. She works with a local hospital making Beads Of Courage. For every test a child has to have they receive a bead for their courage. Once a child beats their disease, they receive a purple heart. When she heard we lost you back in December, she made that butterfly especially for you. It was the first ever. It is now used as their "End Of Life" bead. What an honor Grey. She didn't even get the chance to meet you. I plan on wearing it Tuesday as I speak on your behalf to the Senate.


Then today I was out with Melinda getting ready for our DMB tour. We went to the outlet mall. Going to check out we walked past some stuffed animals. Melinda immediately picked up the Dalmatian. We looked through the rest and under a few others sat one single Oatmeal. You know how impossible he was to find for your memorial, being discontinued. We all must have gone a dozen places looking for him before Aunt Larissa went back to the hospital gift shop and found one left. But there he was, like he was just waiting there for me, on sale for $4.99. I gave him to Melinda. She misses you so. We'll take him with us next weekend as we travel across the state watching Dave.

Then we were walking through the parking lot into JC Penney when this gust of wind came. A piece of paper came out of no where and wrapped around my ankle. I kicked it off and as it flew away, I saw that it was a picture of a butterfly that a child had colored. Amazing.

Thank you Grey, for continuing to give me gifts. You know I need them.

Love,
Forever Your Mom


Wednesday, April 22, 2009

Senate Committee on Health and Human Services To Hear SB 1720


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.




http://www.senate.state.tx.us/75r/senate/commit/c610/c610.htm




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.




http://www.house.state.tx.us/committees/list81/410.htm




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

Our Day At The Capital

Below is the story that covers our day at the Capital. Thanks Jenny and Chris from KXAN. You guys did an awesome job!

Committee Hearning For Greyson's Law


The following link is to our hearing with the Public Health Committee for HB 1795. The date was 4/21/09 at 8:11 am. Our session starts at about 20:35. You need RealPlayer to view it.

http://www.house.state.tx.us/committees/broadcasts.php?session=81&committeeCode=410

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.
As always, Bill was incredible, speaking so eloquently. Seth stood with him, in support of his littlest brother and answered questions from the committee. He was so mature. I am so proud of him.
As we left the committee meeting, Rep. Kolkhorst promised us that none of them would ever forget Greyson. I believe her. Afterwards, Rep. McReynolds made it a point to tell me how much he appreciated what we were doing because of Greyson's loss and that he would never forget my testimony. It went so well. I thank God for letting Grey shine through me.

Monday, April 20, 2009

Fox 26 Houston

Here is the FOX 26 Houston story by Kristine Galvan. There is one hiccup. Unfortunately, Krabbes Disease is not included in the 47 disorders HB 1795/SB 1720 will screen for. It will not be added until it's status with the ACMG (American College Of Medical Genetic) changes from "nominated" to "recommended", hence the need for a Newborn Screening Advisory Panel.

Sunday, April 19, 2009

My 3 Minutes



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.




Dear Honorable Committee Members,


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.

Thank you.

Wednesday, April 15, 2009

Committee To Hear HB 1795


The Public Health Committee has decided to hear Grey's bill this coming Tuesday, April 21st, at 8:00 AM. All those there in person will be able to sign a witness list to show your support. Please, meet us at the Capital. Help us to achieve Greyson's Law.

Monday, April 13, 2009

Grey's Gifts


I continue to receive gifts from Grey. Sometimes I just don't slow down enough to see them, and realize them days later. Sometimes he just smacks me right in the face with them, like today.


Bill and I finally decided, with the help of Mom, to go to the Hunter's Hope Symposium (without the boys) this August. It will be the first time he and I have done something by ourselves, besides the occasional dinner, in at least 10 years. I am so excited! We got a great deal on the tickets, but I hated spending the money.


I got home late tonight after Seth's game and was almost too lazy to stop and get the mail. In the mail was an envelope from our mortgage company. Oh great! I squinted as I opened the letter only to find a check for overpayment on our escrow.


Tickets paid for. Grey's gift.

Sunday, April 12, 2009

Big Whiskey and the Groogrux King

DMB's new album, minus the physical presence of Roi. Now he grabs his sax and plays my Grey to sleep every night in Heaven.

Here's the link to the story:
http://www.billboard.com/bbcom/feature/q-a-dave-matthews-1003961185.story

Only 3 Days


On a day that we as Christians celebrate life, the mother in me is trying hard to not be furious at God for taking my baby. Sometimes it comforts me that God knows what it's like to lose a son, and because of that, He will get me through this. But in my head I'm thinking, Jesus was only buried for 3 days before God sat him at His right side. I've endured 4 months, with no end in sight.

As my two youngest boys run around the house hunting for eggs and eating their candy, I am left to only imagine the look of excitement on Grey's face, now at nearly 16 months, running through the house, being given hints by his big brothers, finding eggs.

4 months ago today . . . it seems like years. The sounds, the smells, the emotions, they all come pouring into my body and out through my tears. What I wouldn't give to have him back with me.

Thanks to all of you who have made it a point to reach out to me today, realizing that even though it is Easter, it is also the 12th. Thanks Mom, for the Easter basket and knowing that chocolate fixes almost everything. Thanks Erin, for reminding me that an Easter egg hunt in Heaven has got to be incredible. And thanks to Pastor Mark for telling me on that horrible day that it was OK for me to be mad at God, and for telling me that in order to love hard I had to be willing to hurt hard. Those words ring in my head every single day. Oh, how I hurt.

Saturday, April 11, 2009

Little Did They Know




This morning 2 men in suits approached our home, Bibles in hands. Seth and Riley were on the front porch, firing off their AirShot guns. Seth hollered to me, "Mom, there are two men in suits wanting to talk to you."




Great. This is not how I planned on starting out my morning. Don't get me wrong, I have nothing against people wanting to share their faith with me, just not at 9 AM on a Saturday. I jumped out of my pajamas and into some clothes and walked out on the porch to greet them.




"Have you ever thought about what Heaven is like?" asked one of the men.




"Of course we do," said Ry. "That's where my baby brother lives. He died at Christmas time, right before he had his first birthday. We had all the stuff for his party, but then he had to get that stupid Krabbes and he died. I know that God gave him a great 1st birthday party with a good cake up in Heaven."




I don't think I've ever seen a man in a suit speechless, but both of them were.




Then Seth chimed in, "I have PKU and they tested me. But they didn't test Grey for Krabbes and he died. Mom, go get them one of Grey's brochure so they can write the Legislators."




I bet that's the first time those men in suits left some body's home with more than they came with, an earful about Heaven and a brochure educating them on newborn screening.




Have we ever thought about what Heaven is like?




Everyday. It's where our Grey lives.

Friday, April 10, 2009

Only Riley



This is what I love about Riley.


In his mind, he is perfectly dressed.


Yes, that is an AirSoft rifle in his hand. He could not find his goggles, hence the Power Ranger mask.

Houston Fox News 26

A huge thank you goes out to Kristine Galvan of Fox News 26 and her cameraman Matt for taking interest in Grey's story. As much as I hated the thoughts of driving to Houston on Good Friday I have no doubt, thanks to the talents of those two, that it will surely pay off. Because it is a Fox station, our story has the ability to be picked up by their affiliates. That's huge!

And, as we told Kristine that Grey's HB 1795 seemed to be stuck in committee without even being heard, she looked up the committee members and realized she had connections to two of them. Then she thanked us for sharing our story with them. Thanked us. She was amazing!


You would think by now that I would have enough faith to realize that, with Grey's hands all over this and God's help, how could this bill not pass?


Below is a link to Kristine's bio:



She expects the story to air late next week. The station wants to take a couple days to promote it. Sounds impressive, I know! Kristine and Matt also want to take some time to make the most of their 2 minutes and 30 seconds they have to summarize an hours worth of interview.


There will be a direct link when it comes out. She will call us and let us know the day for sure. Until then, this seems to be the link to be checking:



Any of you out there in Houston, be looking for the promos and let me know how they are.

Thursday, April 9, 2009

All In Less Than A Year

This is a new video I put together about Grey. Please let me know what you think.

video

Wednesday, April 8, 2009

Easter House




Keeping in our new tradition of making Grey a cookie house for the holidays, Riley and I made him one for Easter. It was Ry's idea. He really misses having Grey around to be a big brother to. I am so proud of him. The other day he told another kid that he too was a big brother, only his little brother is up in Heaven. Wow. Sometimes I get so overwhelmed and it hits me all at once.


Easter Sunday marks the 4 month anniversary of Grey's loss. I can feel myself bracing for it already.


Some good news . . . an anchor for a Houston TV station wants to do a story about Grey. Bill and I will be making a day trip this Friday. Kinda a long drive, but I know we need to do whatever it takes to make Greyson's Law a reality. Watch out Houston, here we come!


Anyways, just wanted to share some pictures of Grey's Easter house. I must say, we're getting better!

Tuesday, April 7, 2009

Little Brady


Fly high and play hard Little Brady.


Just like Grey, not quite a year old.


I hate Krabbes.

Sunday, April 5, 2009

Mashed Potatoes

Dear Grey Grey,

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.

Love,
Forever Your Mom

His High Chair


video


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.



Thursday, April 2, 2009

Please Email Rep. Kolkhorst


We are actually having to beg Rep. Kolkhorst, chair of the Public Health committee in the House, to hear Grey's bill. If she won't hear it, it'll die even before it reaches committee. Please help us convince her. The link to her email is below.



Don't forget to put "HB 1795 - Greyson's Law" in the subject line.