Max would have been 4 this coming Tuesday. Wow - 4! I often wonder what he'd would look like. How he'd sound. What his hobbies would be. Would he like sports? Would he still like music and dance parties? Would he want to be doing everything his sister was doing? I wonder if he would like preschool and what would his favorite subjects would be. I think about how he'd be chasing after our big puppy or getting into trouble by exploring. I wonder how many friends he'd have. I wonder what he'd like to eat and what he'd be picky about. I wonder if he would still like to snuggle with his mom or dad at the end of the night now that he'd be getting older...or if he would be "too big for that".
 |
| Original photo of Max |
 |
| Beautiful watercolor painting in the Beyond the Diagnosis Art Exhibit |
Some days I get lost in thought thinking of these amazing things and wondering about what today would be like if Krabbe had never entered our world. OR what it would be like if we had known when Max was born, through newborn screening, that he had Krabbe...and what that may have meant in saving his life and allowing him to experience some of these things today.
Unfortunately it isn't our reality. Today we can only celebrate the memory of Max. I celebrate the two and a half years that I had with him here on Earth. I keep clinging on to messages, pictures and memories that I have. No new ones to be made with Max - it is hard. Every day is hard. But every day I have to choose to move ahead and acknowledge his presence but try my best to live in the moment...live for today. It just makes it harder when the physical presence of your loved one is absent...especially your child.
But one of the most amazing things that came out of all of this, is that Max was chosen to be included in the Beyond the Diagnosis Art Exhibit that is sponsored by the Rare Disease United Foundation. It highlights children with rare diseases. It looks beyond the disease and shows the spirit of each child through art. Art can speak so boldly and loudly, and reach and move people in ways that words can't even come close. It can leave a lasting impression and make an impact. This beautiful exhibit rotates in and out of universities and medical buildings all across the country in hopes to touch and educate medical professionals and decision makers who really can make a difference in the rare community.
My wish has been to see the painting. It so beautifully captures Max's spirit when I've seen the painting in pictures and to see it in person was something that I put on my bucket list. Unfortunately most of these influential locations are on the east coast and we haven't had the opportunity to venture out that far. Maybe someday...
Then my wish.....my ONE wish came true. We got notified that Max's painting will be included in the exhibit which will be featured at the World Conference for Lysosomal Storage Disorders on the west coast - 5-6 hours away by car. AND it is the week of his birthday. We are going and I can't wait to see it for the first time. I'm not sure what my reaction will be. It is the next best thing other than being with him at this point...so I imagine it will be amazing for me and probably very emotional - in a wonderful sense.
Thanks, Max for this beautiful gift. We love you. Happy birthday, buddy.
~Allison
