Saturday, January 30, 2010

The Week In Review

This week has been a pretty busy, emotional week. Not a day, not an hour, has gone by without my mind constantly wondering back to my little man.

On last Saturday, Bill and I went to see Extraordinary Measures. I feared I would leave the movie feeling as though I had not done enough to try to save Grey. When in reality, there was nothing I could have really done, except maybe prolong the inevitable. That was never an option for us, and I'm still OK with that decision. Instead , I left the movie feeling as though there was still so much more to be done, not for Grey, but for other babies and their families. I wish they would have touched more on the importance of Newborn Screening, but maybe that's part of my journey, not theirs.

The past week I've spent really looking at my journey, openly and honestly. Some days, I want nothing to do with it, and the idea of helping others is just not enough to have to relive Grey's loss. This week, as I leaned towards walking down that path, a few occurrences told me that I was going the wrong way.

On Monday, I got a call from Hunter's Hope. They asked if Bill, Seth, & I would be willing to speak in front of the ACMG about the importance of NBS this May. Once again, Krabbe will be up for nomination to be recommended for UNBS. Hunter's Hope feels that our family's story will help convince them. How can we say no to an opportunity like that? How can we not feel honored to be able to use Grey's loss to save others? The answer came easily. We put it on our calendar. Hunter's Hope also mentioned the possibility of us having an Every Step Walk. As many of you know, Bill and I wanted to have one on Grey's 1st Angel Day, but emotionally we just weren't ready. Tuesday would hint to me that now we were.

On Tuesday, I received a brochure from a place called Morgan's Wonderland, a park for special needs kids in San Antonio. Because I am the Department Head of Special Education at my school, it found it's way to my box. The place is amazing, and although it's not open yet I called and was able to talk to the park manager. The park is to open this spring and he felt that planning a walk for September was doable. It may even be the first walk the park will have. That's really exciting to me! I hope to establish a relationship with these people, making Grey's walk and annual event. Again, I realized that when I do as I am supposed to, things just fall into place, like Greyson's Law. So, be ready friends. I will be looking to put together a committee soon to help plan the walk and will need your help. And please, I am also reaching out to any Leukodystrophy families in Texas. This walk is for your kids too. Please join us.

Tuesday also brought about sad news. After a three year battle, a friend's granddaughter lost her battle to cancer. I had never met the little girl, or her parents, but because of Grey, I felt the loss more than I would have liked to.

On Thursday I had what will probably be my last bereavement counseling session. It was a good session. My counselor is just so incredible! She always shows me how much I've healed, that I'm not stuck is Grey's loss, as I sometimes feel. She also asked if I would be willing to start up a support group for bereaved parents. That too is exciting to me. Plus, it makes me realize that I must not be as crazy as I feel. So as the spring draws closer, I think I will find myself with a bit fuller plate, but they are both things that will help both me, and others, heal.

Thursday brought about the viewing of the three-year-old. As I pulled into the parking lot, I really thought about whether or not I was ready to walk into the church. But then I saw an old friend pull in. I breathed a sigh of relief and got out of my truck. The love my friends give to me is still so incredible! As we walked into the church, there was my friend walking behind me, rubbing my back, making sure I was OK. It was just so natural, that she probably doesn't even realize that she was doing it, or how soothing it was to me. As I approached the grandma she was surprised to see me. "Nicole, thank you so much for coming. But, you are the last person who needs to be here." But I knew that it was because I was the last person who needed to be there, that I needed to be there. Maybe it's all part of my need to heal, to see that I am not the only one who must live through the loss of a child. Part of me felt a huge need to reach out to the mom, to show her that people do live through this sort of thing. Selfish, really. I just don't always want to be "that mom who lost her baby". Maybe I feel that helping others helps me shed that skin. As I drove away, I felt blessed that this time it was me able to walk away and return home to my kids, even if it was only three of them.

I have continued to hold to my New Year's resolution of getting healthy. I've really tried to put it into perspective, that my Grey would have done anything to be healthy. I have had every opportunity to be healthy and for years have chosen not to. Grey is a big motivator for me. Since January 1st I have lost 10 pounds. I work out 5 times a week and have stuck to a 1550 calorie diet. I have not had a real Coke in 29 days! That's huge for me. I used to drink at least 4-5 a day. There is this really cool iPhone app called My Fitness Pal. You put in how much you weigh and your height and how much you want to lose. It gives you the amount of calories you should consume a day. It lets you enter the foods you eat and subtracts those calories from your total. It also adds calories back when you exercise. It has been working amazingly well for me. It has shown me how poorly I had been eating and helps me to look at foods as calories, as opposed to just seeing chocolate or chips. It also makes me aware that my body only needs so many calories a day, and that I don't need to eat out of anger or stress.

Misti's fundraiser looks to have been a success. There is still a couple more days to order, but a lot of people have really come through. Thanks to everyone for contributing. Misti will have a total on February 12th. Again, I have amazing friends!

Friday, January 22, 2010

A Projection Of Light

Within the last couple days I've mentioned to a few of my close friends, and my mom, my feeling of Grey's absence. Like I've said before, most days his spirit covers me like a blanket. Yet the last few days he's left me feeling a bit chilled.

But tonight he gave me another gift, a sign to let me know that he is still with me.

I was begrudgingly working out on my elliptical, having improved from 15 minutes to 30 minutes in the last two weeks I might add, when I looked up at his pictures on the wall, the ones we had at his memorial. They hang above his keepsake chest.

There, between his pictures and his chest, was a projection of light from the circular holes in my new Scentsy warmer that I just got from Misti for Grey's fundraiser. The projection was in a shape of a heart. Just when I think that his little angel world is too busy for me, he proves me wrong.

My little man, he's still AMAZING!

Sunday, January 17, 2010

Grey's Gift Scentsy Fundraiser

My friend Misti sells Scentsy. She has decided to have a "Grey's Gift Fundraiser" for the month of January, her commission paying for the quilt Bill & I want to get made out of Grey's clothes, bibs, and blankets.

Do you know what it's like to have a friend willing to give up her commission to pay for your baby's quilt? I can't even put it into words. But I will say that I would love for Misti's commission to go through the roof because, no matter what, she is set on paying for this quilt. But imagine if she could get the quilt and still have some of her commission left? That would be awesome! She has been there for us, and with us, since before Grey's diagnosis. Show her some love for me!

You can reach her Scentsy website here. You will see "Grey's Gift Fundraiser" listed on the left of the screen under My Open Parties... click buy from order.... and have fun shopping! She will let everyone know the on February 9th the total that was raised for Grey's Gift! Spread the word!

Wednesday, January 13, 2010

The Spectrum Of Grief

It feels like forever since I've really blogged about anything significant. Maybe significant isn't the right word. Personal would be a better word I guess.

December felt like a whirlwind of activity; Grey's Angel Day, his birthday, Christmas Break, Christmas, Riley's birthday, and New Year. This year, as I wearily entered the doors of CHMS on January 4th, I realized that I must be healing. Last year I couldn't wait to get back to work. I had been out since December 4th when we found out Grey was terminal. It was like I needed to be back at work. Work was a full 8 hours of constant support. It was also a full 8 hours where I could hope to stay busy enough to move Grey out of the forefront of my every thought.

It's really kind of hard to explain, the jump I decided to make since the anniversary of Grey's death. I think I just figured that if I could make it through the first year, I could make it through another. And I talk a really good game when it comes to Grey. I think that I work so hard at convincing other people not to grieve him, it rubs off on me. But I'm still afraid to just stop, stop and think about the magnitude of his loss.

I think right now the thing that bothers me the most is the absence of his room, although it's really just an obvious symbol for what is really gone. The house, to me, has taken on a completely different feel. "Riley's room," I tell myself. But it will never really be Riley's room again. To me, it will always be Grey's room, the paint masking it's yellow walls just as my smile masks my heartache. It's still there, you just can't see it. I wonder if Ry feels the same way. I've slept more in there than he has. If I close my eyes, I'm back in the jungle, Grey sleeping soundly in his crib.

The spectrum of grief is so crazy. Within minutes I can go from feeling like Grey's spirit covers me like a blanket, to feeling like he was just a dream. It's hard to accept that I am moving on with my life without him being a physical part of it, although I know that that is the goal. Yet at times, I see his picture, a picture that I've seen a million times, and my chest tightens as I struggle to take the next breath.

On a lighter note, tomorrow is payday for a lot of us. Think about checking out Misti's Sentsy site. I'd love for her to have a record month because of Grey. She's given so much of herself to us. I'd love to be able to give her something back.

Sunday, January 10, 2010

Grey On Inspirational Quilt

Vote for Greyson's Law in the Extraordinary Measures Inspirational Quilt Sweepstakes. Help me tell the world about Grey!

Click here, then look for Greyson's Law on the Inspirational Quilt. You can vote once every day.

Wednesday, January 6, 2010

Greyson's Law In Action

The Texas Department of State Health Sevices has made it official. Greyson's Law (HB 1795) has made it to their website, announcing the formation of the Texas Newborn Screening Advisory Committee. Click here to read more.

In addition to this great news, I have more.

My friend Misti sells Scentsy. She has decided to have a "Grey's Gift Fundraiser" for the month of January, her commission paying for the quilt Bill & I want to get made out of Grey's clothes, bibs, and blankets.

Do you know what it's like to have a friend willing to give up her commision to pay for your baby's quilt? I can't even put it into words. But I will say that I would love for Misti's commission to go through the roof because, no matter what, she is set on paying for this quilt. But imagine if she could get the quilt and still have some of her commission left? That would be awesome! She has been there with us, and for us, since before Grey's diagnosis. Show her some love for me!

Click here to go to Grey's Gift Fundraiser. Then click on our picture in the right-hand corner of Misti's blog.

Below is one of my favorite pictures of Misti, in the midst of her ugly cry. She loves us that much!

Friday, January 1, 2010


Below are my resolutions from last year. I lived and breathed them. I read them nearly every morning, keeping a copy hidden in my desk at school. I am proud to say, that as I read over them a year later, I feel that I did a pretty good job honoring them. But I think it's still important for me to keep them on this year's list. Last year's resolutions were promises to Grey. This year's resolutions are promises to myself. You will find them further down in green.

I promise to never darken your spirit with my sorrow.
I promise to make you as proud of me as I am of you.
I promise to focus on the time I had with you, not the time I'll have without you.
I promise to share your story with everyone I know.
I promise to not turn our house into your shrine.
I promise to do things for me, as though you were here and healthy.
I promise to treat your brothers as I treated you.
I promise to allow your loss to make our family stronger instead of breaking us down.
I promise to live each day as though there is no tomorrow.
I promise to remember what is really important.
I promise to see you every time I look into your daddy's eyes and not be sad.
Forever Your Mom

I promise to take better care of myself, starting with my physical health, realizing that Grey never had the choice to be healthy. I do.

I promise to keep things in perspective, that perspective being from a grieving mother, realizing that nothing is as bad as it could be.

I promise to be patient with others who may have a different perspective, those untouched by such an event that shakes your whole world.

I promise to open myself up to love, and be loved, more than I have allowed the last year, in fear of crumbling by it's touch.

I promise to slow down and see the beauty in a quiet moment, like Grey did when he laughed at the breeze blowing through his hair.

I promise to be a better mom, wife, friend, in hopes of letting Grey's spirit shine through me in everything I do, carrying his smile in my eyes.

I promise to support other affected families, living by example.

I promise, through Greyson's law, to continue to protect newborns and their families, from treatable disorders.

I promise to continue to share Grey with everyone, even though I long to take him back as my own, in hopes of continuing to educate others about universal newborn screening.

Dearest Friends & Family,
Happy New Year to all of you. Thank you for the love and support that you have given my family throughout the last year. If I could wish you one thing, I would wish you hope. Hope can open up not only your heart, but your world.
All My Love,