Trevor Aldrian

Yesterday, I found out about another baby being tested for Krabbe Disease. Trevor Aldrian and his twin brother Tyler were born in November 2008. Tyler does not show symptoms yet of Krabbe, in fact, he is thriving. They live in California, where of course Krabbe's Disease is still not screened for at birth. My heart breaks for his parents. Again, I can feel the anger boiling inside at the cruelty of this disease. Please visit his Caring Bridge site and let them know that there are others praying for them and thinking about them.

Greyson's Law is awaiting the signature of Governor Perry. Hopefully that will be done very soon.

Making the impossible, possible.

I love our bedtime routine with Bailee.  Being that she is 18 months, she still loves to be rocked before being put into her bed.  I sing my heart out as I rock her.  My tune is terrible but she seems to enjoy it.  In her own gibberish, she will ask for me to sing.  I relish this time and know that before too long she will no longer need me to rock her.

Our routine has changed dramatically since 12-12-08.  Every evening since Grey has passed away, I do not rock her the same.  I begin singing and rocking her gently and soon, I find myself staring at her, smelling her and taking her scent in, and running my fingers through her hair that is freshly shampooed.  There is not one evening that I don't find myself thinking of Grey and his family.  I hold on a little longer, I rock a little more.  There is not one evening that I have wished she would go to sleep quickly.  

As I rock her tonight, I again thank Grey for the change in me.  Because of Grey, I am a better mom, and because of Grey I realize the frailty of life and just how precious it is.  

When things happen or don't go right for me, I think of Grey's family.  I think of what they endured during his illness, and what they continue to endure after his death.  I find myself thinking how the things that once upset me, are really not that important and how little those things compare to the magnitude of what his family is going through.  They are survivors.  They are surviving the unbearable.  

It makes me wonder, does God really give you the strength to endure?  They are a living example of the impossible being possible.

Saying Goodbye.... For Now.....

Tomorrow is Greyson Morris' memorial service.  My heart hurts, thinking about his family.  We celebrate his life.  We grieve with his family.  We shed tears for what might have been.  We shed tears of anger.  Anger at such a horrible disease.  Anger that it is not screened for in our state. But we have hope.  Hope for the future of newborn screening.   

This precious boy has touched so very many.  He will continue to touch so very many from heaven.   

We will fight for Grey.  We will join the forces.  We will become soldiers raging a war against Krabbes disease.  We will fight to get newborn screening required for fatal diseases.  We will not quit, we will fight until the end, until victory, just as Grey did.    

The Epitome of Love

Tonight I was able to see little Greyson and his family.  He was sleeping so soundly, the entire time.  It was such a blessing to see them all.  I am grateful that they opened their home to others. They are truly an incredible family.  They think of others in their most difficult times.  I can just imagine how truly precious these last moments with their son are to them, and tonight they shared that time.  That in itself is amazing to me.  Not only is Greyson going to be impacting others, but the entire family is, in ways that may never be known to them. 

The entire trip out there, I prayed for strength.  I begged for strength.  Once again, God provided.

 

For the past almost two weeks, I have consumed myself with researching Krabbes Disease.  I have contacted others that have been affected by this horrible disease.  I did this because I felt so completely helpless.  I was frantic searching for answers, knowing that some may never be known.  I have found comfort in reading God's word.  I brought an extra bible to school.  It sits on my desk.  I find myself grabbing it between classes, during my conference period, and lunch time.  I can just see a student asking, "Hey Mrs. Dunlap, whatcha reading there?"  Then going home and telling his/her parents that Mrs. Dunlap was reading the Bible today in class.  Can't you imagine the phone calls I would receive!  Nope, don't want to open that can of worms!