It was a beautiful Florida day. The sky was blue and it was cool (so special for south Florida) Our neighborhood was putting on an Easter Egg-Strava-Ganza with crafts and food and an egg hunt. It had a nice home town feel to it. It started at 10:00 am but I needed to get Michael out of the house so we drove over to check it out at 9:30.
It was pretty much set up, just a little girl still hiding the eggs. So holding hands we walk up to the craft table and the lady welcomes us and starts talking to Michael. I explained he was non verbal and had special needs. ‘Oh” says the lady “I have a degree and worked with special needs children for many years.” I felt relieved, she understood, so when Michael started grabbing the candy that was set out for cookie decorations it wouldn’t be a big deal. Right? Well sort of. She explained they were for the cookies and handed him some other candy. I took him to the playground, to get him away from the “cookie decorations,” which was the egg hunting field.
He ran all over that playground completely oblivious to the colored plastic eggs hidden every where in plain sight. Stepped on a few and kept on going. After a bit, I wrangled him in to see if I could get a picture in front of the display. As many of you know getting a picture of a precocious 5 year old is a mission in itself but add a Hunter boy high on candy almost impossible by yourself. When Michael sees something he likes he just goes for it. Someones cotton candy, a glass of anything with ice in it – he sticks his hand in to get the ice, or someones golf cart. Fortunately, the owners were fine with him sitting in it. What screams Easter Egg Hunt more than a kid in a golf cart?
The excitement is mounting they have called for the children to line up for the egg hunt. Michael and I walk over and I am wrestling with him because he is always trying to wriggle out of my clutches. The ladies said “Ready, Set, Go!” and off they went including Michael but while the other children ran and squealed with delight, he went to the slide and tried to walk up it and then decided he would use the steps which had eggs on them and children’s hands reaching for them. Michael didn’t even notice and got to the top of the slide and it hit me like a ton of bricks. I stood there looking at my sweet, beautiful little grandson and broke down crying. My heart ached so bad, not for him, he was oblivious and happy, but for me. I didn’t want anyone to see my crying in the middle of the egg hunt so I bribed him with my Iphone and he came running and we got in my car. I cried so hard I had to sit there for a few minutes.
I am usually the one that realizes how lucky we are. There are so many boys, children, people who are so much worse off then we/he is. He can run and laugh and isn’t that what childhood is about? I always say why would you be crying? Look at him, he is so happy. But no matter what I told myself that day in the car I still grieved for my dreams of him. I cried because I am selfish and want him to have what those other little kids have. When I stopped crying and looked in my rear view mirror to peak at my precious boy, he was giggling and grinning from ear to ear at some silly thing on the phone and I realized how lucky we are.
There is hope for this sweet boy and the other Hunter Syndrome boys. Gene Therapy, a possible cure is so close. Just need some money, well a lot of money, 2.5 million to be exact. All the families are working so hard to make this happen and save our little boys.
Please donate (any amount is greatly appreciated) to MPS Super Hero Foundation http://mpssuperhero.org
MPS Awareness Day – May 15, 2017 wear puple to show support.