Monday, July 19, 2010

Heavy On My Heart


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.

11 comments:

童祖如童祖如 said...

It is never too late to learn. ............................................................

俊張霖 said...

不要去想沒拿到的東西,多想想自己手裡所擁有的..................................................

姿弘綸穎 said...

我們能互相給予的最佳禮物是「真心的關懷」。.................................................

亦奈美妮 said...

愛,拆開來是心和受兩個字。用心去接受對方的一切,用心去愛對方的所有。......................................................................

邱思吳佳順翰 said...

唯有穿鞋的人,才知道鞋的哪一處擠腳............................................................

麗王王珠 said...

寂寞又無聊 看到你的BLOG 加油喔!!..................................................

耿麗旺麗旺麗旺綺 said...

看到大家都留言-我也忍不住說聲---加油..................................................

木詹詹詹詹詹行詹詹 said...

若有人問你成功時會不會記得他 試問若你失敗時他會不會記得你......................................................................

麗王王珠 said...

生活總是起起伏伏,心情要保持快樂才好哦!!............................................................

孫邦柔 said...

我們必須先有哭泣,才有歡笑;也必須先感到人生的悲哀,然後才感到人生的快樂。................................................................

司冯欣 said...

財富並非永遠的朋友,但朋友卻是永遠的財富。......................................................................