Monday, December 20, 2010
Sunday, October 10, 2010
Sunday, September 5, 2010
Again, it's been a long time since I have blogged. Part of me fears that if I allow myself to blog, I'll slip back into the void of Grey. This has always been Grey's blog. But tonight, when I logged in, I noticed that the leopard yellow background that was Grey to a tee, had been deleted. It felt as though another little part of him had been taken away. I've searched for hours, trying to find another background that would suit him. I've settled for a Fall one.
It is that time of the season, the season that begins our loss. I don't think it will ever matter how many years pass, this time of year will always be that season. I have taken the approach as to face it head on, and fill it with the things that made Grey happy.
It's only the beginning of September, but last weekend, which was August, Riley asked if we could put up the Halloween decorations. I love Halloween. Ry loves Halloween. Grey loved Halloween. It was really the only holiday that he really celebrated. His first Christmas he was only weeks old. But you could see in his eyes that he got Halloween!
The days leading up to Halloween were a whirlwind. The day before was his first and only admission to the hospital for "failure to thrive". Halloween day brought test after test, including a spinal tap (while he was awake), and the news that hope was grim. With that, we decided to discharge him and take him home.
But nothing could slow Grey's spirit down, not even his broken body. Halloween evening he was dressed as a giraffe, smiling and laughing at his brothers, as we strolled him down the street to Trick-Or-Treat. That night, Grey gave me such a gift, the gift of a single moment where nothing else mattered except that smirk of his and his wide eyes, his body disguised for just a few hours. I can't explain it, but it was like he knew I'd need it, and his sweetest burned it forever in my mind.
No-Bake Pumpkin Pie. Grey would eat my pumpkin pie for breakfast, lunch, and dinner if I would have let him. And I did. I even remember Bill calling me once while I was at school. "We're out of pumpkin pie and somebody is pissed (Sorry Mom I know you hate that word, but Bill said it, not me)! He won't eat anything else." That was Grey, stubborn to the core. He ate pumpkin pie up until 5 days before he died. It was the last thing he ate. Oddly, that makes me smile.
I take comfort in knowing, that as Ry and I put out our decorations, he too was missing Grey. "Mom, what do you think Grey will be for Halloween this year?" His question stopped me dead in my tracks as I tried not to cry. Do you know what it feels like, as a parent, to no longer really know what your son likes? Wow! I couldn't answer him with anything other that an, "I don't know." His question bothered me all day. It made me feel empty, like a piece of me was lost. I called Bill. I called Mom. No answers from them either. Hours later I text my bff with Ry's question. Minutes later she responded.
Grey is going to be a ninja angel this year.
And with that simple response, I felt my son again, through the love of his Godmother, already celebrating Halloween with us.
Monday, July 19, 2010
As our trip to the Hunter's Hope Family & Medical Symposium approaches, I find myself preparing my heart for the trip. Last year, we were the new family, missing our little boy, trying to describe him to those who were never lucky enough to meet him. It'll be bittersweet, seeing my Krabbe family, and unfortunately meeting more. I know I'll see Grey in a few little bodies. I know I'll see fear and uncertainty in parents' eyes. But this year, it's my goal to show new families that life after loss does exist.
First, I have to send out a HUGE thank you to all those who helped us to raise funds for the Hunter's Hope Every Step Family Walk. At last glance, Grey's Gifts had raised $2025! Your love for our little boy, even 19 months later, still amazes me.
Grey has been heavy on my heart lately, and I'm sure it's because I see him every time I ask for a donation, every time I think of our upcoming trip. It was a nice break to go to a PKU clinic for Seth this past Saturday. Different kid, different disease. As I sat and listened to Seth's doctor speak, I realized just how important research is and just how lucky we are. If Seth had been born 30 years earlier, he would be a very different child. The advances in PKU, just in the last 11 years, have been amazing! My hope is that the day will come when Krabbe will be just as treatable as PKU. But there needs to be more research on this little-known, yet devastating disease. This last month I, along with many of you, did what I could to help fund that much needed research. Again, I can't thank you enough for taking "every step" of this journey with me.
I will post pictures of our trip on Facebook throughout the week. Bill & I have promised not to take our computers with us (iPhones don't count). Keep us in your thoughts for an easy travel and a relaxing trip. Even though we were at the Symposium last year, most of our trip seems to have been lost in the fog, being so fresh in Grey's loss. This year we welcome the break as we continue on our path to heal.
On another note, the Texas State Department Of Health Services has updated it's site to include the Newborn Screening Advisory Committee. It's amazing, yet heartbreaking, all at the same time. To see Grey's name, to realize that this was his creation, I can't even start to explain how I am feeling. I am so proud of Grey and Bill, through his appointment as Chair of his son's committee. I am so lucky that both of them are a part of me.
Wednesday, June 30, 2010
Dea - a thousand thank-yous. How you captured Grey's spirit and pieced it together, I'll never know. I'm just glad he led me to you.
Tuesday, June 29, 2010
Friday, June 18, 2010
The above video was taped at last year's Hunter's Hope Family & Medical Symposium. We, along with other Krabbe families, were fortunate enough to be featured in it. Please take seven minutes to watch it, to see what a big role Hunter's Hope plays in the lives of so many Krabbe families.
It is still not too late to sponsor Grey's Gifts for this year's Every Step Family Walk at the Symposium. Click here to take "Every Step" with us.
Tuesday, June 15, 2010
Monday, June 14, 2010
Sunday, June 13, 2010
Friday, June 11, 2010
Tonight I realized that I can run, but I can't hide.
It's rare that Bill and I put ourselves into busy social settings. It's kind of been an unspoken rule since Grey's death. I'm not sure if it's because I feel uncomfortable, feeling like everyone there will feel sorry for me, or if it's because I feel our presence will somehow dampen the celebration, making others feel uncomfortable. It's hard to explain, but even though tomorrow will mark 18 months since Grey has been gone, my friends are still (out of the goodness of their hearts) very sensitive to Grey's absence.
But tonight, my good friend turned 40. Bill was excited that we had been invited to her party. "Are we going? Are we going?", like an excited little kid. I was really not up to it. But then I pictured my friend, stroking Grey's hair on one of his last days, and again her and her husband sitting on our couch on Grey's 1st Angel Day, and realized that it would be selfish of me not to celebrate with her.
For fear of getting lost and being late, we left early and arrived even earlier. Upon waiting for people to arrive we spent time with my friend's mom and her close friend, who we had first met briefly right after Grey's loss. As more people arrived my friend's mom became hostess, and her friend continued to visit with us. After some time of small chit chat, she asked us how things were going with Greyson's Law. But in her eyes, there was not the expected look of pity. Instead I found a look of pride, and it made me glow inside.
As we continued to talk, more people arrived, friends . . . friends with babies. Deep breath. Bill dove right in, playing with this baby, holding that baby. I watched as the newest baby in our school family arrived, and all of a sudden it hit me. All three babies, healthy babies, in the room had had an expanded newborn screening test because their moms had know Grey. That was a tremendously overwhelming feeling!
Tonight I realized that I will always be "that mom who lost her baby". But Grey was not just any baby. It has taken me 18 months to realize it, and accept it, but with pride in my eyes I can now be "that mom".
Before I left tonight, I held the first baby since Grey left my arms. My friend's husband walked past me, "You look good holding that little one". His words stopped me cold. He saw me for exactly who I was, a forever grieving mom accepting, and enjoying, all the gifts her son has given her.
Thank you Mitzi's Mom's Friend (I'm horrible with names) - For the pride I saw for my son in your eyes. You never even met him, but I know just by our conversation that he's changed you too.
Thank you Mizti - For turning 40 and getting me out, and for not being afraid to share Cash with Bill and I from the very beginning.
Thank you Mitzi's mom - From the first time I met you I could feel your warmth for my son.
Thanks Jana - For letting me enjoy Davis from afar until I was ready.
Thank you Erin - For letting me hold Clay, and asking if I was sure first.
Thank you Stephanie & Peter - You both made sure that I knew that Presely's NBS test came back perfectly fine. You both knew I needed that.
And thank you Clint - Those words rolled right out of your mouth, like they were just suppose to fit. You know what? I think they are and just maybe they do.
Thursday, February 25, 2010
Monday, February 22, 2010
Friday, February 19, 2010
Monday, February 15, 2010
Friday, February 12, 2010
Monday, February 8, 2010
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.
Saturday, February 6, 2010
Saturday, January 30, 2010
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
Sunday, January 17, 2010
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!