|We have been trying
to get, Courtney's friend, Hayron's family to take him out with
us. I was pleased to say the least when Manuel, (Hayron's dad)
called on Thurday to say that he would be off work on Friday and
they would be able to go with us to Moody Gardens.
As soon as I got off the phone with Manuel, I called David Wiesner, he's the Attraction Sales Manager at Moody Gardens to see if he could get us in early before the crowds would arrive. David remembered Courtney from last year when he arranged for us to get in early. He is one of those people that you meet only every so often, he is sincere and just so kind. David was very patient with us allowing us to take as long as we needed to get from one place to another. He told us there would be a group of school children arriving soon so we didn't stay too long at the Aquarium. Hayron is so cute, I love looking at how big his eyes get when he looks at things that interest him. Hayron and Courtney would have loved to stay there all day. It was wonderful to see Hayron's parents,
Manuel and Maciel, so excited. Like so many of us with children with SMA type 1, we don't get out, often not leaving the house for weeks because of illness or for fear of exposing our angels to even a cold which could take their lives. All during the morning Manuel and Maci were talking about how beautiful this or that was and how they have these in their country, Cuba. This family came to the United States when Hayron was a baby in search of the best doctor's for their little son, hoping to find a treatment to prolong his life.
As we entered the Rain Forrest, their mood changed, full of mixed emotions. They each would point at the plants saying "we call this by this name in our country" or this plant has the most beautiful flowers, first with smiles on their faces, then silence, they would look away. I wanted to cry for them for their pain and yearning for their country. Manuel said in his country he had many of the same plants in his garden. Manuel would bend down over his son's wheelchair and softly speak in their own Cuban language about the birds or flowers. Being in the Rain Forrest seemed almost like they were seeing old friends, happy and yet sad because they would be leaving the friend again to go back to their daily lives of around the clock care of their beloved son. God, I pray for a cure for Spinal Muscular Atrophy, so it will not take any more of our childrens lives. I just wish they could all run and play, sing Barney songs and call their mommies for a drink of water in the middle of the night. Our angels are so precious, they tell us they love us with their eyes, they sing their songs with their own little sounds. They may only be able to move one finger, but we are just as proud of that tiny movement as if they had rode a bike.
As we were leaving Manuel told me "Linda, I want for us to return here again, yes we must". We love it here!
Thank you Lord for this day, this was truely a "Heaven Sent" day! Thank you David Wiesner and Moody Gardens, we hope to take Hayron and Courtney there for many more visits.