In about 14 hours, Hannah’s first birthday party celebration is going to begin. We have spent the day putting up balloons, reorganizing the house, and just preparing for this momentous event. We have received dozens of birthday cards and some gifts from friends and well-wishers, which have made this milestone even more exciting to celebrate knowing that so many people care about Hannah and are cheering her on.
But tonight I have to take a step back and realize how far we have come in our fight against this disease. We have made it to her first birthday. However, in just the past couple of weeks, we have lost a sweet little 8-month-old boy to Gaucher’s type 2 and have two GD2 children fighting for their lives right now. I only know of about 20 families with kids living with this disease as it is.
This disease is just brutal. It shouldn’t be this way. I keep thinking…Will Hannah make it to her second birthday?
Oh, what a scary thought! I know you can’t help but think about it. Tomorrow (well, I guess today, huh? It’s after midnight!) try to just focus on the celebration. I am so happy to “witness” Hannah’s first birthday celebration. I hope everyone has a joyous time. Tell Hannah I (along with Amber, Andre, Amareah & Anna) said, “Happy Birthday, Sweet Girlie!”
.-= Petula´s last blog ..Unrevealed thoughts. Crazy, lazy mommy. Random Day. =-.
Focus on today. Focus on celebrating. Tomorrow is soon enough to allow the doubts and fears and questions to creep back in. Enjoy celebrating with your family and friends that love you and your sweet baby! We’ll have our own party with you in October.
Much love from Mel and Tim and Miss O
Be in this moment, C. You deserve the happiness this day holds. xoxoxo
See you in a few.