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!
