How do you blog on a day like yesterday?

Our nephew Alex turned 12 yesterday. For the first time, he celebrated his first of many birthdays in heaven. Alex was born with Joubert Syndrome. The proper definition from the Joubert Foundation's site explains that this rare genetic disorder is characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment.

And they are right, Alex was so rare and special to everyone that ever met him. Last Sunday we celebrated his birthday with his Mama, Daddy & Step-Mom - the most loving parents you'll ever meet. His grandparents, brothers, sister, other Aunts and Uncles, all of his cousins and close friends were all there to sing Happy Birthday to him. 

Alex giving Airlie some cousin kisses last summer!

Alex may have had plenty of physical impairments, but I can assure you that mentally, he was one of the smartest, funniest, natural little boys. He loved to play around, loved when his classmates would get in trouble and laughed as hard as he could when his Nanny would "get on" his Papa. 

It's hard to make sense of tough times, short lives, why children are born with certain syndromes like this.  God's love and light could always be seen in Alex's beautiful face. God's miracles were proven time and time again, as Alex wasn't projected to live past the age of 3. The turn out for his service seemed endless and another testament of God's grace was present. My mother-in-law, Alex's Nanny, said it best: Alex was God's gift to not only his Mama & Daddy, but to all of us that had the wonderful privilege of knowing this sweet little boy. 

I cannot imagine never being able to hold, kiss or smell Airlie again. I cannot imagine growing up without my brother. As my mom told me after Airlie arrived, there is just something different when you become a grandparent. As much love that flows through my heart for my daughter, I believe the amount that consumes my mama's heart as a grandparent must be unimaginable. I cannot fathom losing my grandchild and trying to stay strong for my children at the same time.

Running for Alex & The Joubert Syndrome Foundation last October.

Fashion shows, the hottest trends, court cases for Lindsey Lohan are all so irrelevant when you think about the every day things we all go through - losing loved ones, job insecurity and a mountain of bills. My family holds very tightly to their relationship with God to help them through everything. But we all still need prayer.  I have learned over the past two years how strong and powerful the ability of prayer can be. 

So please keep my family in your prayers as their lives will never be the same without Alex but were forever changed because of him. 

This is one of the best books I have ever read. It will touch and move you on so many levels. The similarities to my nephew Alex are uncanny. Thank you Frances for showing this to me.