Sunday, November 29, 2009

Thanksgiving Break

As Thanksgiving approached, I looked forward to the end of "this time last year". Next to Bill's birthday, Thanksgiving was the last holiday that we spent with Grey. A big part of me looks forward to not having to compare everything to last year. But I also know that the three weeks ahead are going to be tough; Dec.3rd-Bill's birthday, Dec. 4th-our last dr's appt. & the day we called Hospice, Dec.12th-the day we lost Grey, and Dec. 18th-Grey's 2nd birthday. I'm so grateful that I have all of you pulling me through.

Wednesday, Ceci and I took Ry to the zoo. We all had a blast! I even got brave enough, only because I was dared by a 6 year old, to feed the birds. I hate birds. They just scare me, their wings and beaks and all. You just never know what they could do.

Thursday, the boys and I celebrated Thanksgiving with Bill's family and then with my dad and step-mom, as Bill had to work. It was nice to be around all my nieces and nephews. But Grey was always at the forefront of my mind. My dad took the boys out in his new Mustang. Instantly he became the coolest grandpa ever! And that's neat for him. I haven't been the best at making sure he gets to spend a lot of time with the boys. I need to do better.

Friday, I had a girls' night out with my sisters-in-law. We had a great time! We went to dinner and saw New Moon (not that great). We all are so busy in our little worlds. It's nice every once in a while to be able to make time for each other. Sometimes I forget just how much they love me and my family. We haven't been the easiest group to be around the past year.

I spent Saturday waiting to be able to go pick up my mom at the airport. Boy did I miss her! This is the first Thanksgiving we haven't spent together in many years. I was glad she got to spend time with my brother and his family though. She needed a break from us, just to be able to get away and not eat, sleep, breath Grey's loss like we do. But having her home is like wrapping yourself in your favorite cozy blanket, like the feeling you get as it rubs up against your cheek and you close your eyes and smile. I don't know how else to describe my relationship with her. She's my everything.

Sunday morning we got up and put a turkey in the oven to celebrate Thanksgiving at home with my mom. As the turkey cooked, Bill, the boys, and I headed to my sister-in-law's for my niece's 3rd birthday. We have pictures of Grey this time last year (see, there it is again) at her 2nd birthday party. They are the last pictures we took of him, taken only 2 weeks before he died. It was really hard to be back there today. Everywhere I looked I saw him. But in his own way, he once again let me know that he was OK. He's so awesome like that!

This evening Mom and Ceci celebrated Thanksgiving with us. There's no Thanksgiving like a Thanksgiving at home, even if it's a few days late. After dinner we put up the Christmas tree and hung the stockings, both of which brought me to tears. I was fine until I found Grey's hippopotamus ornament. I just wanted to touch it, because I knew he had. I know it sounds crazy, but unlike his clothes that I had washed, it was one of the few things that has remained untouched, expect by him. Riley was diligent in hanging Grey's stocking. On the hook also hangs Grey's baby blue "Grey's Gift" bracelet. In his stocking we placed Oatmeal (his monkey). Grey is still so much a part of this season, as he always will be.

Many of you have asked if we are going to do anything on the 12th, and honestly, we've gone back and forth. But today we decided that we would like to open up our house, from 1:00 - 5:00, for those of you that would like to stop by. Nothing fancy, maybe some snacks. However, we will have a small helium tank and balloons so that we can send them up to Grey. Bill, my mom, the boys, and I will be releasing our balloons shortly after 2:00, but balloons will be available throughout the day.

Please keep our family in your thoughts, prayers, energies . . . whatever you do. We'll take all we can get.

Sunday, November 22, 2009

"We're On A Mission From God."

It's times like this weekend that make me realize, that no matter what, Grey was put here on this Earth and given to us to show others the importance of Newborn Screening. Our time in Buffalo was amazing! Hunter's Hope treated our family like superstars. The recognition that they gave Grey, Seth, our family, and Greyson's Law left us speechless.

Imagine a room filled with hundreds of people. On every table was a postcard of Grey.

We were honored as Grey's family. The interview that Bill and I did this summer at the symposium was put to video, along with interviews of Jim & Jill and other Krabbe families. It had all of us in tears. When the producer of the video approached Bill and I to thank us for being a part of it, we were so struck by her sincerity.

From this trip, I wanted so deeply for Seth to understand what part he played in this whole journey. Now, I have no doubt that he does.

He was portrayed as the picture perfect example of newborn screening. He was star struck when Jim Kelly approached him to tell Seth how glad he was to finally get to meet him. Here was this 6'4 Hall Of Fame quarterback kneeling down to shake my son's hand. My heart just swelled! Jim was so great with him! Toward the end of the night, Jim was raising money by riffling footballs at his friends. He would call out his friends' names and throw them the ball, them having to give the foundation $100 if they dropped it. The last name he called out . . . Seth's. Seth stood up and Jim motioned for him to come up front with him. Seth ran to Jim with excitement and Jim signaled him to go long. Seth ran out and Jim threw an autographed ball to him. Thank God Seth caught it! He jumped up and down with excitement, running to Jim to receive a high five. Maybe someday Seth will realize that very few people get a chance to catch a pass from a Hall Of Fame quarterback. Bill and I could only watch with amazement. I know Grey was right there with us, making sure Seth was not a butter-fingers.

Hunter's Hope raised over $120,000 Friday night. Awesome! The Kelly's are such an incredible family. I hope someday we can do for Texas what they have done for New York. Being with them again made me realize, that no matter what Bill and I decide to do with Grey's foundation, Hunter's Hope will always be a part of it. They do amazing things. I could never put it into words.

Our two days were spent with three other Krabbe families. Dalton is a 13 year old young man transplanted with his twin's bone marrow. He's amazing, as is his family.

Kelly also lost her son David, nearly 10 years ago, to Krabbe. She works for Hunter's Hope. She made our trip seemless, organizing everything. She was incredible!

The other family, Terry and Scott (Reb), lost their baby boy Liam 8 years ago before his 1st birthday. We connected with them this summer. Spending a couple days with them this weekend confirmed a bond shared because of our losses. They, too, are amazing! We flew into Chicago with them on Saturday and had lunch. In the Chicago airport were statues of the Blues Brothers. I love the Blues Brothers! To quote Dan Aykroyd, "We're on a mission from God." Aren't we all?

Many thanks once again to our Hunter's Hope family; Jim, Jill, Jacque, Kelly, Caitlin, and Andrea. I don't know where we'd be without you.

Wednesday, November 18, 2009

We Hope

I'm getting very excited about attending the Hunter's Hope Candlelight Ball on Friday. My friends have approved my dress, my wrap, and my shoes. I've picked out and been given the perfect jewelry to wear. Bill and Seth have been measured for tuxes. They even got their hair cut, but let's not talk about Bill's haircut because I'm not sure what possessed him to get his head SHAVED! I've spent a month picking out the perfect dress. He gets his head shaved.

I think I am most excited for Seth. It seems as though he has no idea the part he plays in our newborn screening journey. If Seth had not been the prime example of newborn screening at it's best, I'm not sure we would have even realized that Greyson was an example of newborn screening at it's worst. I'm so proud of him. He truly believes in our journey. I just don't think he realizes he's the reason for it. I hope some day he will.

Seth is mostly excited about meeting Jim Kelly. The cool thing is, Seth will tell you that before we lost Grey, he didn't even know who Jim Kelly was. He doesn't love Jim Kelly because of his Hall Of Fame status, although he is a huge football fan. He'll tell you he loves Jim Kelly because Jim Kelly cared about Grey. I can't wait for Seth to meet him and realize that Jim's biggest legacy is helping other families affected by Krabbes.

So, keep us in your prayers as Friday approaches. We hope that our Grey continues to touch people. We hope that Seth figures out where he fits in this whole puzzle. We hope that our story continues to educate others.

We hope.

Grey would have been 23 months old today. I miss him so.

Sunday, November 15, 2009

Hunter's Hope 10th Annual Candlelight Ball

Bill, Seth, & I have been invited to attend the Hunter's Hope Candlelight Ball in New York this Friday, November 20th.

If you would like to help support this event you can make a memorial donation by clicking here.

When donating in Grey's name, they will ask for our address so that they can notify us. Our address is:

1503 Tadmore Rd.
Canyon Lake, TX 78133

Many have already asked me to post pictures when we return. It's almost like none of you have ever seen me in a Ball gown before! :)

Saturday, November 14, 2009

Grief, Too, Is A Gift

November 12th came and went, and with it came some answers that I had been searching for. Knowing that I might have a hard time with eleven months approaching I scheduled an appointment with my counselor from Hospice. It had been awhile since I had been there, maybe a month and a half. I just felt the need to check in.

I guess I really started questioning myself about two weeks ago. A Christmas advertisement came on and I found myself smiling. Smiling . . . I had lost my son this time last year, yet holiday music stirred excitement in my soul. Should I really be smiling? Is that OK? How can a grieving mom smile at Christmas jingles knowing that she will have one less this Christmas season?

I don't have very many people to compare my grief to, except for my husband. We are in to very different places. I guess sooner or later, although you know better, you try to figure out who is grieving the right way. Silly, I know, but there is no manual for this, no right or wrong. Maybe that's partly why the process is so hard.

I questioned if I should be angrier. I questioned if I should appear to be more distraught. I questioned if I should be able to function at all. I don't know the answers. But I do know what I feel in my heart, and it took talking to a unbiased source to figure it out.

Grey was a gift, and continues to be. He has changed my life for the better, and will change the lives of others, with and without me knowing it. I still have a connection with Grey that would be hard for most to understand. I feel him. I smell him. I sense him everywhere. He shows me things every day, just to let me know that he still needs me.

He still needs me. He needs me to accept his gifts and use them to benefit myself and others. He needs me to be happy and to show that happiness to his brothers and his dad. He needs me to live, to breath, to laugh so that he can shine through me. And it's like he can only get to me when I'm in a good place. I don't know how to explain it. But when I'm in a dark place, he is no where to be found. Maybe his spirit is so filled with light, that he can't go there. I think that when I am lost in his loss, not even he can find me.

It's taken me nearly a year, but I think I've finally figured out what grief is to me.

Grief is:
a cardinal
his laugh
hot, caramel apple cider
DMB songs
monkeys and giraffes
my friends
Christmas lights
my mom's scar
Hunter's Hope
pumpkin pie
baby blue
my husband's eyes
shooting stars

I'm sure my grief is much more. As painful as my grief is, it is all the things that I love. I guess my grief is, and always will be, my Grey. How can I not welcome it?

Wednesday, November 11, 2009

Eleven Months

He's almost been gone longer than he was here.

My Grace Is Gone.

Wednesday, November 4, 2009

Breathing Easier

I seem to be breathing a little easier tonight. Our Halloween ornaments are lit in their last hoorah before they come down for another year. The tint of the orange lights and the smell of harvest candles seem to be soothing us.

As I gladly put our first Halloween without Grey behind us, I am pleased to find that I am excited for the Christmas season to approach. As I rushed to take the Christmas ornaments down last year, only seeing Grey in them, I feel rushed this year to put them up for the exact same reason. I'm ready to sit on our couch in the hues of the blinking lights and remember our time together.

I find myself looking for singing hippos, caramel apple cider, and new ornaments to adorn our tree in his memory. We'll hang his stocking, stuffed with his Oatmeal (his favorite stuffed animal not the cereal), and make him as big a part of our Christmas as we can.

I guess I just find it surprising, although I miss him terribly, that I would be OK with enjoying Christmas because, especially in his last days, he enjoyed it so much. When we first brought him home to a Christmas filled house, he spent hours staring at the tree, laying in his bassinet or swinging in his swing. A year later, we would spend hours swaying him in front of that same tree to soothe him. Ry had picked out this goofy Hallmark ornament for him, Santa trying to stuff a hippo down the chimney. You'd push it's button and it would sing the 50's Christmas tune "I Want A Hippopotamus For Christmas". Grey LOVED that ornament! When we first got it for him in November, he would demand that the song play over and over with an excited screech. During his last few days his loud demands were replaced by a subtle stroke of his fingers on my shoulder. Even then, his spirit was amazing!

And once again, I'm reminded how lucky I am to have been his mom. To think that maybe a little bit of that spirit came from me, from the love that I gave him, is, for this moment, enough. He was a happy baby. He was a strong baby. It was like he took every breathe knowing they were numbered, yet he smiled anyways.

I can do that. I can do that, because he did.

Tuesday, November 3, 2009

Little Red Bird

I have to remember that only I am responsible for my mood. It doesn't do me any good to let other's moods turn my bright spirit dark. The fact that I haven't figured out how to do this yet is frustrating. It was one of my goals when I started out in my bereavement counseling months ago. Now nine months into it, I feel that I'm further behind than when I started. And it's irritating, because I know better. Sometimes, it's just easier to give in. I'm so tired.

Twice this week I've found myself outside in the middle of the night, longing to feel closer to Grey. I find myself begging him to remind me how strong I can be when I need to be. I try to remind myself of all the things he's taught me; unconditional love, patience, compassion, hope. But in the coolness of Fall's midnight hours, tears run down my face and I wonder how I'll get through the night, much less this season, this lifetime.

I long to be the family we once were, before we knew what true loss was. By no means were we the perfect family, but we were not broken. Maybe it's just me that's broken.

As I walked out the door this morning, angered by it's start, I again found myself reaching out to Grey, talking in my head as to not be heard by little ears ahead of me. Then out from our shrub flew my little red bird. I thought he had long since headed south. Instead it looks as though he has made a home.

I see you. Please don't go.

Monday, November 2, 2009


The anticipation of our first Halloween without Grey was much worse than the actual event. As I watched the clock, I went through last Halloween hour by hour; talking with the doctor, visitors, the spinal tap, discharging him without much hope, one dear friend waiting for me in the school parking lot wearing his Ray-Bans to hide his eyes, another dear friend holding a huge lion to welcome Grey home. All these things I will never forget.

As the witching hour approached, the boys got on their costumes and we headed out to our friend's family's Halloween party. She had asked us weeks in advance, knowing what the day could bring. We had such a great time! We also had the usual Morris drama. Ry got hit in the eye with a Velcro Nerf dart. It had to have hurt! He didn't even want to go Trick-or-Treating. But Bill, being the super dad that he is, picked him up and lugged him through the neighborhood.

I did find myself watching all the little ones that passed by, wondering what Grey would have been or how he would have enjoyed the night. I found myself looking for signs from him, and as always, he followed through. Lagging a bit behind the group, I passed a dad holding his little Yoda. I saw him staring at me from a distance, probably at my pumpkin t-shirt. As they walked past me I smiled. Then little Yoda threw me a really loud kiss. It was awesome!

As much as I enjoyed the party, emotionally what happened next made my evening. My best friend has recently become an aunt. It's been wonderful watching her grow. Not having kids of her own, it was hard for her to really know the bond that a mom feels for her baby. But now that she has Thomas, she gets it. Grey has made her appreciate Thomas more, and Thomas, in turn, has made her appreciate Grey and my other boys more. Anyways . . . I get a call from her that evening. I asked her what she was doing, expecting the usual answer of the yearly Halloween party in which she has spent too much to be dressed as Jesus. Instead, she told me she was spending Halloween taking Thomas Trick-or-Treating. My heart melted. She had called me to check in, tell me she loved me, and tell me how much she was missing Grey. It was all I could do to not cry. I told her I'd see her soon and we said our good-byes.

Coming down the home stretch, we hit the last few houses on the block.

"Trick-or-Treat!," I heard the boys yell. A familiar figure with devil horns on her head stood in the doorway of her brother's house. Ry was ecstatic!

"Mom, it's Titi (his name for Ceci)!"

And it was, with her little man Thomas. I walked in the house, warmed by the familiar blanket that is my best friend, always there when I need her most. I watched the joy in her eyes as she introduced me to Thomas. I saw the love in his as he followed her every step as I held him. It was a perfect end to a perfect evening.

Ceci has always told me that she sees so much of Grey in Thomas. Later that evening, Ceci text me, "Did you see Grey in Thomas?"

"I felt him as he kicked his legs while I was holding him," I text back.

Thank you Dunlaps & Hayworths. Thank you Ceci & Thomas. Thank you Grey.