Be Still

One year, two months, one week, and six days.

That's a long time to have lived my son's disease over and over again. It's taken me a while, but I've come to realize that, for now, I can no longer put myself there. I believe that Grey lived with Krabbe so that I didn't have to. To be in the place that I am now, trying to fix this disease that broke me, is breaking me more. He'd never want that for me.

I have to realize that it is not reasonable for me to believe that I can save the world from this horrible disease. I gave it a good run, accomplished things that many have not. But, for now, I have to walk away.

I have to be still.

I have to take Grey back. I need him to be the little boy he was before we realized he had Krabbe, free from the expectations that I have put on him through this journey.

My blog, my Facebook, my connections to other affected families, all constant reminders of just how broken I am. All reminders of just how broken Grey was.

I hope those of you who know me, whether affected by Krabbe or not, will know and understand the reasons for this leave. I need to figure out who I am, outside of Grey's mom. I need to find out who I am without Grey. Blogging, connecting, sharing, have all kept him near. My stories, my emotions, have kept him alive. But now, I need to let him soar.

One year, two months, one week, and six days.

Consumed. Consumed with who he has become, with who I have made him, with who I have made me.

It's time to be still, to listen, to live.

Good-bye for now my friends. Your love for Grey still amazes me. I'll carry it with me always.

Fly high and play hard Little Man. I love you.

Yesterday, Today, & Tomorrow

At what point to I hold up the white flag and surrender to this enormous loss of my son?

As I sat this evening with my husband and filled out paperwork to form a non-profit organization, Grey's Gift Foundation, I questioned my commitment. I do things 100%, or not at all. And I wondered, can this broken mom continue to give to what broke her?

Some people lose a child, time passes, and they start to rebuild a future. But how can you rebuild a future when you're living so much in the past? Not a day goes by that I don't think of other families that could be affected by some rare disorder. What if I were the only vessel of education that they had, because of Grey? What if I weren't there to speak of him?

I'm so tired, tired of being caught between yesterday, today, and tomorrow. I can only give so much. Never do I want my other three boys to feel as if they aren't as important as Grey. But for the past 3 years, he has been my focus. Do I allow that to continue, or do I put him back in line with the others? And if I put him in line, will he fade away?

I haven't quite figured out the best way to try to heal. Do I continue this journey of awareness, a journey so intense that if I close my eyes, I feel him near? Or do I lay down on the floor, cry for a few days, pick myself back up and leave him in the puddle?

I know that there will never be a day that I don't think of Grey. But should there be days in which all I think about is drivers licenses, PKU, and Little League? Where is the line of doing for Grey, and doing for the other three?

At times I think I could blow it all away . . . quit blogging, close my Facebook, disconnect myself from those who have suffered the same fate. I wonder if in doing so, I might breathe a little easier, without the constant connection of Krabbe.

But what if I'm that one, that one that Grey chose to get his message across? Would that lessen his loss if his voice was no longer heard?

There's got to be a point where I take him back, just him, free from disease, free from expectations, free from exhaustion.

Will I ever be?

Piece By Piece

This week has been an exciting week, as far as Grey's quilt is concerned. I have found a quilter and am extremely happy with her.

My biggest fear was that when I met someone willing to make Grey's quilt I would not be able to part with his things. However, that was not the case.

I walked into a stranger's house with a container full of Grey's clothes, blankets, and bibs. With me I also brought some pictures of Grey. She was very interested in Grey's story. As we continued to talk about Grey, she sincerely listened and seemed to pick up on his personality very quickly. She fell in love with one of his pictures, the one above, so much so that she asked if she could scan it and place it in the middle of the quilt. Never did I even dream that he could be on his quilt. How cool is that?

It was interesting to me that she picked out two outfits, the two outfits that we had had professional pictures made of Grey in, to be a focal point on the quilt. Looking at his card from his memorial, she also picked the line, "Life is short, but sweet for certain," to go on the tag she hand sews on the back, along with his name and dates.

I went in with a pattern, full of stars, and she said that she thought that would go perfectly with Grey's jungle attire. She can also quilt in stars and swirls. She asked me to meet her in town to pick out more material in a few days. When I did, she had put more thought into the design and asked if she could do one block as the Texas flag with "Greyson's Law - HB 1795" on it. She also wants to put a star in each corner, to spell out G-R-E-Y.

We went through the Quilt Haus and a couple fabrics jumped out at me, both peach and yellow in color, like Grey's room. One was stars, which will be used for the backing. The other was butterflies, which I picked out for his Godmother. She always thinks of Grey when she sees them. It's a DMB song, "Butterfly". Very Grey.

I am extremely excited to see the finished product, although I'll have to wait until June. But I promise, as soon as I have it, you guys will see it.

Again, I'd like to thank all those that participated in Misti's fundraiser, and Misti, that helped me make this happen. I'd also like to thank those of you that continue to donate. I am so lucky to have friends like you, that want to be a part of Grey's quilt. Please know that every time I wrap myself in it, I will be grateful for all it entails.

It's In Our Genes

Today was a pretty good day in the Morris household.

Seth had his monthly appointment with his PKU doctor, Dr. Matalon. We are so fortunate to finally have a great PKU doctor. They are few and far between in this area. This is only the second time we have seen him, but at our first appointment he decided to find out what mutation Seth had. Why did it take us 10 years to get a mutation? Again, we finally have found a great doctor. Anyways, there is a new drug out, Kuvan, which is the enzyme Seth lacks. However, Kuvan responds to only certain PKU mutations. Today, after 10 years, we finally found out Seth's mutations. One mutation is the bad one, the one associated with Classical PKU (R408W). But the other mutation is only a variant PKU (L249F). This is why Seth is able to process more protein than most PKU kids. L249F is a great respondent to Kuvan. This means that the older Seth gets, the more protein he will be able to process. Finally, in our crazy gene pool, something has gone right. Take that screwed up Morris genes!

Riley made a donation to Hope Hospice today. He had a "100 Day" project for school. He decided that he would collect 100 coins and give them to "the lady that played a game with him when Grey was sick" (the children's bereavement counselor) and "the lady that my mom talks to" (the adult bereavement counselor). I was so proud of him when he walked into their office with his bag of change. He has learned a lot through Greyson's loss. He is growing into such a caring, sincere, little man.

I am so proud of my boys! Sometimes I get too busy to realize just how lucky I am to have them, even if there are only 3 physically here with me. When I lost Grey one of my good friends told me that Grey would always be the whisper in their ear, helping them to make the right decisions. I guess she was right.

Grey's Quilt

This week Misti presented me with a check for nearly $400 to put towards Grey's quilt!

I just wanted to take a second to thank all of you that participated in her fundraiser. I can't tell you how excited I am to have a quilt made out of Grey's things. I have to be honest, I am really getting impatient to get started. I'm still looking for someone to do it. The idea of turning over all I have left of Grey terrifies me. But when the right person comes along, I'll know. If any of you out there know anyone who quilts, please let me know.

I have a great design in mind. I'd like to incorporate a few things into it; jungle animals (which most of his clothes have), Greyson's Law (the flag of Texas), and stars (already part of the flag). I want each square to have a Texas flag in it. The Texas flag has 4 parts to it. I want each of those parts to be different articles of his clothing, blankets, or bibs. Every flag will look different. I don't know that I'm explaining it well, but in my head, it looks amazing!

Misti - A thousand times you've told me not to thank you. So instead of my words, I can only show you in love. I hope I show you enough. Your passion amazes me! I have no doubt that Grey uses you to make sure that I'm OK and that I have what I need. And for being open to that, I will never be able to thank you enough.

The Tables Turn Again

One of my constants has been my yearly trips with my bff to see the Dave Matthews Band. I live for them. I figure, I give to my boys 51 weeks of the year. One week I save for me. That one week I spend with my friend and the DMB. Every summer we see them somewhere, at least twice. We've been a lot of places, seen a lot of things, all in the name of our love for the DMB, and each other. But everything changes.

The summer before last we went to Oklahoma City, Houston, then Dallas. Grey was 8 months old. As we were getting ready to go, I became anxious, unsettled. In hind sight, I wonder if deep down I didn't already know that Grey was sick. That leaving him behind was reducing the few hours I would have left with him. I made it through the tour, returning home ready to see my boys (especially Grey, since it was the first time I had ever left him). The next day Bill took him to the doctor, a month early, because we were concerned with his lack of progress, regression would be a better word. That day marked the start of this crazy journey.

Tonight my friend called with wonderful news. She, again, was going to be an aunt. However, the baby will make it's appearance on September 10th, the day DMB plays Dallas. She told me that she had found the one thing that could keep her from seeing the Dave Matthews Band.

The rational part of me understood. Since the birth of her nephew she has blossomed into this amazing person that I could have never imagined her to be even just 3 years ago. How could I expect her to not to be there to meet #2?

The crazy part of me was heartbroken. The one thing I do for me, with her, gone in a flash. I don't even know how to explain it, the importance of that time with her. But things change.

And then I remember, if not for Grey, she would not be who she is today. The love that Grey taught her, the importance of family, the ability to live each day like there's no tomorrow, Grey gave her that, through her nephew. She now has Halloweens, 1st birthdays, and Christmases.

Years ago, I always wished that she would someday realize the importance of fully loving a child, almost to the point of frustration. Now she has that.

So take a deep breath Nicole. Everything changes. And there's always next summer.

Always, my friend. Always.

Raw

I remember that when I first lost Grey, my eyelids would feel raw from the tears I had cried. I'd cry myself to sleep. I'd cry when I first woke up. I'd pull myself together and make it through the day at school, only to cry on the way home. I'm not sure what it is about today, but today, once again, I feel raw.

The weekends are always harder than my weeks. If I don't stay busy, I tend to lose myself in Greyson's memory. Nobody seems to understand my need for motion except me, and maybe my mom.

I've spent most of today realizing all the things I'll never get to do with Grey. I'll never sign him up for Little League. I'll never get to meet his friends. I'll never get to share Thin Mints with him. I'll never build a race track with him. I'll never yell at him for hitting his brother too hard with a Nerf sword. All these things, just a few realizations from one single day. Tomorrow I'll realize more, like he'll never watch a Super Bowl with me.

I don't know what it is about today, but every time I see his picture . . . I just feel raw.