I’ve had a very hard time trying to finish a post for our blog – the past two months have been mentally trying for our Krabbe and Leukodystrophy community. Since 2013 has begun we have lost six of our beautiful children. Each loss leaving us with a bigger tear in our hearts.
Madison – Age 6 ½
Adam “JoJo” – Age 2
Candise – Age 9 ½
Matthew – Age 2
Madelyn – Age 1 ½
Montgomery “Gummy” – Age 4 ½
Although I don’t personally know the families of the children listed above I can say that I know them better than some of my closest friends. We share the same hopes and fears, we have relished in our children’s small successes and we have shed tears together as our children struggle through the journey of this awful disease. Each child although unique is also a reflection of our daughter.
When Lauren was first diagnosed with Krabbe disease I felt as though my whole world came crashing down around me. She had been served a death sentence and I mourned her life, I mourned my smiling healthy baby girl and I prepared to begin a new path with my dying child. I remember thinking that no moment to come in my life could possibly hurt more, and that when Lauren would pass I would be prepared.
As time passed, I discovered how resilient we are. I pushed aside the idea of death and the future and instead shifted my focus to the moment at hand. Lauren is alive, she is present, she deserves to be treated like the living. So began the quest to ensure that Lauren would live with a quality of life. My husband and I learned to look for small signs and moments to rejoice in. While other babies her age were walking for the first time, we were happy to hear Lauren’s voice. While other children began speaking, we would hang on to Lauren’s sighs and the occasional almost silent laugh, a laugh sweeter than any other sound we have ever heard.
We have adjusted to our lives, and the more time that passes the more I fear to lose what we have. Life is not easy, and it is not fair, but I have found joy and happiness in our greatest struggle. I can’t imagine losing it….
My heart is broken for the parents of our Angels, there are no words that can make right of the moment you lose someone you love. I pray that they may find peace.
I pray for a miracle, I pray that God heals Lauren and that He heals Lauren’s sisters and brothers. I Pray for a cure for this disease, I PRAY!
I also make wishes all of the time, i wish on stars, the moon and with pennies. I welcome any opportunity to express my hope.
The other day Lauren and I were shopping at the mall and we decided to take a rest by the fountain. I looked into the water at the cracked tiles that were littered with copper coloured coins. The pennies shone a dull glimmer, and for a brief moment I remembered how magical this fountain had seemed when I was a child. I looked back at Lauren and asked her if she would like to make a wish, she batted her long eye lashes at me (of course I took that as a yes). I grabbed a penny from my wallet put and held it against Lauren’s soft palm for a moment before tossing it into the fountain. I would share our wish but I hear that’s bad luck, I’m sure that you can guess it 🙂