Saturday, September 26, 2009

My Little Left-Hander

Last night, in my dream, I saw Grey. But it was different, almost like I wasn't dreaming at all.

I was laying in my bed. I sat up and saw Grey, sitting on a stool at a fold-out table. He was coloring. He would color, then look up at me and smile.

I noticed he was coloring with his left hand, which was amusing to me. I've always teased Bill that none of our kids, like him, are left-handed. Grey died before we could really determine that. So, to see him coloring with his left hand made me smile. Yet another way that he was like his dad.

I sat up and called his name. He looked at me, smiled, and waved. I woke up, sitting straight up in my bed, waving. I looked out into the living room and could swear that I saw him. So much so, that I grabbed my glasses and put them on.

He was gone. But I had a strong sense that he was doing just fine, a peace that I haven't felt in awhile.

My little left-hander.

Sunday, September 20, 2009

Last Fall

I guess I have been putting off this post for awhile now, but I knew inevitably, sooner or later, I would have to blog about "this time last year".

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

You And Me

He had your eyes.
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

No Limitations

Today, Grey has been gone for nine months. Sometimes when I think of him, it just seems so long ago, like he was never here. But most times, when I think of him and I close my eyes, I can still hear him, his laughter and his babbling. I can feel his energy. I know he's always close by.

And if you have read Bill's blog today, bear with me because mine is very similar. Funny how we both picked the same event to tell about on the nine month anniversary of Grey's loss. Most days, Bill and I are so connected, even when he is miles away at work.

I always felt a sense of urgency with Grey. I think he felt it too. It's like we both knew that we were racing against the clock, trying to fit everything in. Getting him his highchair was no different. I searched for the perfect highchair, and once I finally decided on one, Ceci and I drove all over San Antonio to find it. It's particular pattern had been discontinued and there were few of them left.

I think I got it for Grey when he was about 4 months old, way too little to actually be able to sit up in it. But we tried, month after month until he had finally gained enough head control at around 6 months to use it.

Dinner time was always a game for Grey. Before the highchair he was placed in his bouncy chair next to the kitchen table while we ate. He did not like being on the floor, but with 5 of us at the table there was rarely enough room to place his bouncy chair on the table.

It was continuous, his banter for our attention. And as he finally moved into his highchair, you would think that the banter would stop. But you would be wrong, because now he was king! Table conversations were nearly impossible to have, as he would babble louder and louder. And if that didn't work, he would take his right hand (having already at 8 months lost the use of his left) and bang it on the tray. Keep in mind that this was no easy feat for him. It took a lot of concentration and pure will to move a limb that barely had any neurons heading it's way.

But there he would sit, head of his table, calling all the shots. He lived his whole life that way. Despite his body, he knew no limitations.

The video below was taken just about a year ago. It's of Grey, sitting in this throne.

Friday, September 11, 2009

That's Not Grey!

Last night Riley was REALLY missing Grey. He had asked to get his urn off the mantle. He sat with it on the couch while he watched cartoons. Watching him from a distance I would see him hold Grey's urn to his cheek, embracing it the best way he knew how. I went over and sat by him.

"I really miss Grey Grey," Ry said sadly. I understood.

"If we opened his urn, would we see pieces of his eyes?"

What?! Had I really done that poorly of a job explaining to Riley what cremation was? Had he thought, for the past nine months, that there were really pieces of Grey in his urn? My heart hurt.

"Can we open it?"

Deep breath.

"Give me a minute Ry, and we will."

I went into my bedroom and called my dear friend in Canada, one who sadly knew more about this subject than I.

"Grieving mother question . . ." I went on, "What did you tell the kids when they wanted to see the ashes? What did you tell them to expect?"

She told me that she told her children that their sister's body had to turn to ashes so that she was light enough to fly.


So off we went, Ry and I . . . and a screwdriver.

As I unscrewed to bottom of Grey's urn my heart hurt with anticipation. I had never seen any one's ashes, much less my own son's. As I opened it up, I was surprised at the amount of cotton in it. It's such a small box anyways, 3x3x3. As I removed the cotton I saw the bag, a simple plastic bag with a twist-tie weaved through a silver tag with the number 323 engraved on it. I took it out of the urn and Grey now fit in the palm of my hand. I stared at it, waiting for the emotion to come.

"Well, that's sure not Grey!" Ry blurted out. "Whew, he really is in Heaven!"

He was right. Waiting for the hurt to hit, I suddenly realized that those ashes and those bones, though once part of Grey's body, were no longer Grey.

They were just what was left so that his spirit could fly.
Thanks C.

Monday, September 7, 2009

Venturing Out

Today I planned a boys' day, at least for Seth, Riley, & Bill. Luke is 14. At times he ventures out of his room, but he could never be seen in public with us. Having to spend his days at school with his mom is enough! Anyways, I thought hard to find a place that at least three of my boys would enjoy, without spending a fortune.
So I decided on the Alamo. I know, I know. We only live 45 minutes from San Antonio, but the little ones had never been there. They were so excited last night when I told them that they couldn't sleep.

They were fascinated! How could a boy not love looking at all the guns and knives? I found it extremely funny when they realized that we, as Texans, did not win the battle. They were very upset! When we bought them toy Alamo soldiers at the gift shop they argued over who was going to be the Mexicans, not because they both wanted to be Texans, but because they both wanted to be the Mexicans so that they could win.

Another thing that stuck me funny was their fascination with the "ghosts" of the Alamo. Last night we watched a show called "Haunted History". Each week it showcases a different city and last night it happened to be San Antonio. It was hysterical to watch them peep around every corner to see if the coast was clear.

We ran into a man advertising a museum across the street, which was really cool. He was dressed like someone who was at the Alamo would have appeared. The boys were in awe of his real Bowie knife. Before we left we asked him if the boys could take a picture with him. He kindly obliged. So Bill tells the boys, "Go stand by the man in the costume." The man quickly replied, "Not a costume. Period clothing, sir." That man takes his job seriously!

But I have to tell you, that as we ventured out, Grey was on my mind. I looked for him with every baby's shriek. I saw him in every toddler's scamper. And I wondered, if Grey were here, would I too be as stressed as these other parents, trying to keep their kids quiet and contained in this holy mission?

As we were in the gift shop, making our inexpensive outing not so inexpensive, we passed Alamo Christmas tree ornaments. I turned to Bill and told him that this year we needed to keep an eye out for a star ornament for Grey. He wandered off and returned with . . . a star ornament. But not just any star ornament, the perfect star ornament. Because on the star was a cardinal.

Now those of you who have been following me know the story of the cardinal. But I will again share for those of you that don't.

I hate birds. Plain and simple. Not sure why. Just do. Awhile ago, I was having a rough day, just full of grief that I didn't know what to do with. It had just rained a bit and I decided to go outside to enjoy somewhat of a cooler evening and get the mail. As I approached the mailbox, a bird squawked. I hate birds. I looked around to make sure that it wasn't going to dive bomb me. There it sat on the telephone wire. I headed toward home and as I approached our driveway it squawked again. I looked up. Same bird. Same squawk. It was messing with me. As I turn to walk down our driveway I said out loud, "OK Grey. You know I hate birds. If you're going to use a bird to get my attention, it better be a one pretty bird." And with that, the most beautiful cardinal swooped down from behind my back, over my head, and off into the woods. Ever since then, I see cardinals everywhere.

Only Grey could use something I hate and turn it into something I search for.

It was a good day. And even though I venture out, I still see Grey in the strangest places, in the strangest forms.

Friday, September 4, 2009

Shine On

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

Lasting Legacy

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.