Monday, August 31, 2009

Forever Broken

Last year, out of the blue, one of my students started giving me huge attitude. Don't get me wrong, she was always full of attitude, it had just never been directed my way. I would try to check in with her, see if she was alright, and she would ignore me. I figured it was a phase, or possibly a defense mechanism. I had been her teacher since 4th grade, her only constant. She was now in the fourth month of 8th grade. It is not uncommon for kids of poverty to pull away from relationships before they know they are about to lose them, in her case, leaving for high school. The change in our relationship saddened me, but I felt that she needed to do what was best for her.

In the midst of this, I lost Grey.

I returned to school after Christmas break when the kids did, Grey being gone less than a month. Down the hall came my student. Before I knew it she was in my arms, crying.

"Mrs. Morris, I'm so sorry I was mean to you. I just didn't know what to do. I didn't know how to tell you that I'm pregnant."

Last Friday afternoon I got a note in my box. It was from that student. She had her little baby and couldn't wait to bring him up to school to show me. 4 o'clock Monday rolled around, and in the craziness of the day, I forgot to return her call. At 4:05 I was called to the office. I had a visitor. My first thought was that of an unsettled parent.

As I looked through the glass windows of the front office, I saw my former student holding her two week old son.

Deep breath. I put on a smile and walked in.

As I hugged her, she handed him to me. He was the first baby I have held since I lost Grey. He was so little, so perfect, so innocent. I spent a good 15 minutes with her, holding, feeding, burping her little boy. I passed him off, hugged her good-bye, walked down the hallway and cried.

I know how important it was for her to share her baby with me. But nothing, nothing made me feel more broken than holding that newborn baby.

The selfish side of me wonders how a 15 year old girl can have a healthy baby, while I can't. My world revolves around my boys, yet because of me, my make-up, my baby suffered from a horrible disease that cost him his life.

Dearest Grey,
I am so sorry; sorry that I couldn't fix you, sorry that you suffered because of what first lived in me, sorry that you had to hurt, sorry that you had to leave. As long as I live, I will carry with me these faulty genes as a reminder of what you could have never been. You did the absolute most with what you were given. For that, I will always be so proud and grateful. The only reason I can walk with my head up is because of what you accomplished in your short eleven months.
Forever Your Mom

Friday, August 28, 2009

All Along For The Ride

As this school year approached, I looked forward to starting a new year. I was excited about how well, that I feel, I have started to heal. I was glad our journey with the legislature had come to a successful end. I was ready to teach again; something, that at the end of last year, I honestly wondered if I would still be able to do.

Looking back to last May, I can freely admit to the complete mess that I was. To those of you that put up with me, thank you for really choosing to make that journey with me. It would have been much easier for you to go down a different path. I can now walk into work with a clear head, without Grey in my every thought and action. I feel like I can once again do my job as well as I did when I was oblivious to Grey's health only a short year ago.

And although I no longer think of Grey every minute of every day, I do still see him in many of you throughout the day. I've seen him in my friend's smile as he looked at Grey's picture. I've seen him in an inquisitive student. I've seen him in a stranger as she put her hand on my tattooed wrist and cried, at that moment realizing that I was Grey's mom. I've seen him in a note from a former student wanting to share her healthy, newborn baby with me. I've seen him every morning in the same friend's eyes as she asks me how I'm doing, in her next breathe always asking about Bill. I've seen him in a heart-felt conversation with another friend who realizes how lucky she is to still have her son. I've seen him in a friendship that I've overlooked and her husband's sincerity.

The cool thing is . . . is that you guys probably don't even know that Grey is using you to let me know that he is still taking care of me. It's like he drew all of you in from the very beginning, with those eyes, that smile, and his spirit, so that you could take care of me after he had gone. How could you not love me because of him?

I am so thankful for all of you. And although I know how much we all miss Grey, I feel lucky that he took us all along for the ride.

I love you guys. I consider you all family, and it's so good to be back home.

Monday, August 17, 2009

Hunter's Hope Symposium

Tomorrow marks a year since Grey's first doctor's appointment that sent us on this crazy journey that we now call our life. Who would have thought that a year ago I would be arriving home from a Krabbe medical symposium? Who would have thought a year ago that Texas would have new Newborn Screening laws in memory of my son? Who would have thought that a year ago I would be mingling with Jim Kelly in this exclusive club that no parent ever wants membership in?

As Bill and I loaded the plane for the Hunter's Hope Symposium I had many mixed emotions; anticipation, excitement, nervousness, anger, loss. I had no idea as to how I would make it through this week, but I was going into it with a positive attitude, as positive as I could be considering the rawness of my recent loss.

My head spun as I realized those around me were much more informed about the disease that I didn't even know existed a year ago. Enzyme levels, mutations, transplants, gene therapy - all things we knew nothing about due to the quick progression of Grey's disease. As one who takes pride in being a good teacher, I was ignorant about the one thing that would forever change my world. But I can say that I am no longer ignorant, and will continue to research this monster that has taken my baby. I will continue to educate others in his memory.

One of the most obvious things that I first realized was that Krabbe effects every child differently. Most have similarities, but they all respond differently to the disorder itself, and the treatments that come with it. Every family chooses a different path with their little one. I can say that the path we chose for Grey was truly the path he was supposed to take. Although it was hard to be there without him, as is every day, I know he was not supposed to make that journey with us. I am at peace with that.

I met several great families and had several great experiences while we were there. As a huge football fan, it was nice to see Jim Kelly as Hunter's dad instead of the Hall Of Famer that he is better known for. His family is incredible, and we have been invited to attend their annual Candlelight Ball in Buffalo this coming November. We were also asked to do both a radio and film interview about Greyson and our relationship with Hunter's Hope. It felt good to share his story and to witness once again as to how Grey still moves people.

But the ability to connect to with total strangers was what surprised me the most. There have been a few families that I have met online through this adventure. To meet them in person was like saying hello to an old friend. No one can understand what it's like to lose a child except those who have been through it. It's a bond that's indescribable.

There are so many people that I would like to thank for helping me through this first symposium, but I just wouldn't know what to say. So, I think instead I will end with a story that touch me most (I hope this mom won't mind me sharing), followed by some pictures of my new "family".

There was a family there who took Bill and I in right away. Ironically, Bill's name, first and middle, is exactly the same as their son's. I don't even know how to explain why this story touched me so, maybe it was just because it really shows the unselfish love of a mother who knows she is losing her son. We were in a group with just moms, sharing our story. She saw symptoms of Krabbe in her son at birth. From the time she found out her son was terminal she was worried as to who her son would be with when he went to Heaven. To ease her mind, and teach her son, she found pictures of her relatives that had already passed. Daily she would show them to her son, like flashcards. She would tell him that it was OK to go with those people. That is unselfish love. I wish I had thought of it.

See you next year guys. I miss you already.

Monday, August 10, 2009

The Spectrum

As I sit and anticipate our trip to the Hunter's Hope Symposium on Wednesday, I am taken back by how much our lives have changed in the past 12 months.

A friend reminded me yesterday that a year ago, Grey was giving her high fives. Today, another friend gave me a beautiful statue of an angel jumping into his mother's arm. Do you see it . . . the spectrum of my recent life?

I tell you, he was my shooting star. Bright and brilliant, but gone so quickly. People wait their whole lives to see a shooting star. They stand on their back porch, waiting in anticipation, and then one day . . . Ohhhhh, Ahhhhh. And then it's gone. Do you remember what you felt like the very first time you saw a shooting star? I was lucky enough to hold one in my arms.

A year ago, we were just starting to think that Grey may have some developmental delays. We were still being told he was a lazy baby. He was too smart to have anything "really" wrong with him. Tomorrow, we leave for New York to speak at a symposium with Jim Kelly because we were fortunate enough to have changed Texas history with the passage of Greyson's Law. The day that we arrive in New York marks the eighth month of his loss. There it is again. Do you see it?

There has to be some way to pull this all together. There has to be some way to pull this spectrum, this spectrum of colors together. Because I know, when all the colors come together, they make Grey.

Oh, Grey.

Wednesday, August 5, 2009

It's In Their Eyes

I just wanted to share a letter that we received from Senator Uresti today.

Bill is tireless in our fight to continue to spread awareness about Greyson and Krabbe Disease. Grey, as well as our other boys, are so lucky to have him for their dad.

At times I've wondered why Bill and I, more often than not feeling broken by our genetic combinations, were brought together. Then I look into his eyes, those so closely resembling Grey's, and I get it.

Monday, August 3, 2009


Most of you know that I have been able to benefit from the services of Hope Hospice since Grey's death. The counseling that I have received from them has been incredible. I spent the first six months getting individual counseling. I have spent the last 6 weeks in a mothers' bereavement group, having my last meeting today. I thought that now might be a good time to reflect on what I've learned:

Grief comes in waves. As long as I allow it to flow through me, it will not knock me over.

I am grateful that I was aware of Grey's terminal condition. I am thankful that I got to say goodbye, hold him, and see his spirit leave his shell behind.

Anger gets you nowhere fast. And in my angry stages, I would never want to hinder people from grieving by not permitting them to grieve in their own way. There is no right or wrong way to grieve.

I have come out of this a different person, and so will my friends and family. I can come out of this better or worse. I feel that I have chosen to allow Grey's death to make me a better person. I have to work hard at it every day. However, there will be some, that for whatever reason, will unknowingly choose not to. It is not my place to judge them. However, it is my decision as to whether or not I will allow them to continue to be a part of my life, as it is their decision to allow me to continue in their life.

That being said, I have learned that some friends and family are your life, while others come and go with the seasons. This has probably been the hardest thing for me to accept. Some were there through Grey's illness, others for his death. Some were there right after. Some were there through this first summer. Some have been there the whole time. Being in a relationship with someone who is grieving, I know, is not easy. I realize that just because my life stopped doesn't mean others did too. Please know that I am grateful for whatever season you could give me. I cannot take the loss of these relationships personally. People give all they can give. I know that sometimes, I required too much. I hope that, as our seasons changed, you were able to take something of value with you. I did.

Grey's loss has made me a much more sensitive and aware person.

I have realized that it is OK to take care of me, and I have learned how to take better care of others.

I have learned that it is OK to continue to enjoy the things that I enjoyed when Grey was here and not feel guilty.

I have learned that every second is one that you will never get back, whether you're with a friend, your family, or a stranger. I got to say goodbye to Grey, but I might not be so lucky with others.

Those who have not lost a child could never understand the depth of my feelings. I can't expect them to. But I can be thankful when I see them try, even if the wrong words come out of their mouths.

As summer approached I was terrified of the time I would have on my hands. But I learned that my boys still needed their mom, my husband still needed his wife, my mom still needed her daughter, and my friends still needed my ear.

I am proud to say that I have made it through my first summer without Grey, even though I still mark his milestones in my head. I imagine I always will.

Saturday, August 1, 2009

The Ups & Downs Of Grief

This picture was taken not even two weeks before we lost Grey. What a gorgeous little boy, even in the midst of his inner struggle. Let me just preface this blog first by saying that today has not been the best day. Grief comes in waves. No matter how much I hate it, bottom line is, at times it's still a very big part of me.
I can go for days celebrating Grey's life and the 'successes' that have come from his loss. But there are days that even saving 150 little Texans a year just isn't enough. Because mine was not one of the 150 saved. The sacrificial lamb, it sometimes seems.

Then there are days that I cannot even comprehend the enormity of creating Greyson's Law, and my heart beats with pride. We have been on TV. We have been asked to speak at conferences and events. Strangers walk up to us and thank us because they are about to become a parent or grandparent. The number of lives that Grey continues to touch is incredible.

Yet part of me needs to pull him back in, to share him with those I choose to share him with, to be selfish. Part of me wishes I could wake up from this nightmare, his impatient crying on the intercom that has been packed up for seven months.

I've learned a lot about grief and mourning this summer. There are moms out there who have lost their children and didn't have a chance to say goodbye. Moms who never felt the unconditional love I received from Grey. There are moms whose children left behind very little, much less a legacy.

Grey's death seemed to be lined up with the stars. Everything about it, and those things that would come after it, seemed to just unfold as if it were all a plan. Sometimes I feel that Grey was giving us an easy way out by passing so quickly and peacefully, because there are moms who continue to fight, with their children, every day and I don't know if I could do that. And I think he knew it.

Today I went to Toy-R-Us to buy a birthday present for a very special little girl, who despite great odds, has flourished to her first birthday. While I was in the aisles looking for the perfect present, I was taken back to right before we lost Grey. How could I plan for a 1st birthday party, not knowing if he would even have one? What could I buy him that he could really maneuver his poor broken body to play with? How could I celebrate knowing the end was so near? I remember being so angry, so sad, not wanting to celebrate, secretly crying as I walked through the toys, knowing in my heart that he would be leaving me sooner than later.

This life is full of ups and downs. It's weird how such a great loss can bring you both. I'll never understand it.

Happy 1st birthday Little Miss Hannah! Through Grey's loss I have gained both friendship and admiration for your mom. I have been able to give you things that I couldn't give Grey, like a 1st birthday present, and that makes me happy. I'm excited to be able to celebrate your day tomorrow. You're a fighter, little girl, just like your mom. I'm so lucky to have you both in my life. I have no doubt that Grey watches over you. I'm sure he'll be with us tomorrow, as we celebrate you.