break time

I sometimes tell myself I need a break from my I-cell support group…

This week we lost two little ones. Eryka Barre & Wynnie Johnson. Eryka made it to 4 years of age and Wynnie to 6 years of age. I will not go into details on how they left this world. Only thing I can say I-Cell disease is responsible.  

I must admit, I am an emotional wreck every time I hear the news of one of our kids leaving us. Crazy thing, I have never met any of these kiddos in person. The only connection I have to their world is their parents/grandparents that share stories and pictures on our support group online etc. Before meeting these families on the support group, I went on a Google stalking spree; I wanted to learn every little bit about Brielle’s disease. 

A text book can only give me statistics and scientific research. I was already aware of that information when I spoke to the doctors. I wanted to know THE LIFE of a child with I-CELL disease. Through my Google searches I found a blog about an I-Cell baby girl Gabrielle Ross (who had already left this world when I found her blog). After Gabby’s blog I found Dorian & Wynnie’s blog (twin brothers with I-CELL) … found many more  after those.

I’ve never had an online relationship with anyone, but I can tell you that I definitely have one with my I-CELL family. 

Why is my hurt so deep when we lose a child?... My mom has told me, “maybe you shouldn’t spend so much time connecting with your group, it can’t be healthy for you”. I know what she means, she knows I hurt every time I tell her a story of one of our kids being in the hospital or leaving us. 

Why? 

… because I know the feeling of losing a child. So I grieve with every parent. I grieve their loss and grieve Jaileen’s loss and as terrible as it sounds; I start grieving for Brielle. 

… because of that moment when you have to say Goodbye or See ya later, and you are left with empty arms.

… because I know I will relive this terrible nightmare all over again one day.

… because I am living this journey with them and slowly my daughter is declining just like them.

… because I see how this disease has no mercy, it takes them all one by one.

… because there is not one thing any of us can do about it.

So yes, maybe sometimes I ask myself, why I keep putting myself through this emotional roller coaster?

Truth is because even though those bad moments are BAD… Let me tell you that the good moments are GOOD!!

… when we share our children’s accomplishments

… when we get a glimpse of their unique personalities

… when we see how they all resemble each other in their own special way

… when we learn from the parents that have been there

… when they are happy and joyful; which is almost always

… when they are beating the odds

… when they pull through & believe me.. these kids pull through!

For as tiny, limited and fragile these kids are.. boy, are they strong, courageous, and determined to fight! I’ve had my share of kids, and been around many. I can honestly say these kids are the happiest babies. 

Sometimes, I think people feel bad for us… Don’t! We have a happy life… I cannot tell you how much joy a child this special brings to this world. For anyone that has ever met Brielle, I don’t need to say it. She brings beauty out of every person she encounters. Strangers are drawn to her. I share her life for everyone to see the beauty that she is. Not for sympathy. This little one makes everyday brighter.

Life is good, but heaven sounds so much sweeter!

Fly high Eryka and Wynnie.

http://dorianandwynn.blogspot.com/