I wanted to apologize to you all for not keeping up with my blog. It had been a lot of changes in our lives, and I am trying to make the kids feel safe and secure int their new environment. As you all know, autistic children have a difficult time transitioning, and right now my little boy who is autistic, and my NT daughter having some issues getting used to their new life’s.
As I wrote in a previous post about “A Wish For Children“, Amin was granted to receive a wonderful gift from the New Hope for Kids foundation. He was granted a dream vacation by Disney Dream cruise line.
Amin worked very hard in the past years, he advanced a lot despite all his health problems, which was still not resolved till this day. He spent many hours in school, in therapy and doing his home work. We were thinking that, he deserves a break from all that, with much-needed fun, and excitement. He was presented with tickets to go on the cruise to the Bahamas, and Disney Castaway Island.
Amin loves boats, and water, so this was definitely a perfect gift for him. We left on a Sunday, and came back on Thursday. The preparation was exciting, yet nerve wrecking too.
As you all know from previous posts Amin has a medical condition (other than the autism), when he just stops breathing all of a sudden. So far no one was able to figure out the cause of this. He had stopped breathing three different times in the past, and I had to perform CPR on him, as well as he ended up in ICU, intubated for days. Last time the doctor told me to prepare for the worst, because there is a good possibility that this will happen again, and it might be irreversible. At that time I went into a complete preventative mode, but I had no idea what was I preventing. Lived close to a hospital and first responders station, carried bunch of medicine in the backpack, O2 sat monitor and everything you can imagine. Looking back those days, it seems foolish, but I guess it comforted me. Every day I dropped him off at school, which is 30 minutes away from my house, I made sure he got lots of hugging, and kisses because of what the doctor said, ” it might be the last time I see him alive”. Over the months I realized that I am driving myself insane, and started allowing him and myself more room to move around. Meaning, if we wanted to go somewhere, I do not necessarily need to explore the road to the nearest hospital, carry two backpacks for things we might need in case of another hospitalization.
Applying for a wish for him was a big step toward more independence for us. We left on a beautiful sunny day from Port Canaveral, with much anticipation and the friendly crew of the Disney Dream Cruise ship. Once we stepped onto a the cruise ship, all the activities and possibilities took my mind off of what it might happen.
Amin and Safiyya was in dreamland for the entire time of this vacation. I had a hard time to fight back those happy tears watching my kids enjoying themselves, laughing and being carefree. From the beginning till the end, we were treated like royalty. Disney really goes out of their ways to please all of their customers, and the Wish Foundation representative certainly there to make the special child’s stay even better than anyone can imagine.
You all know that I am the biggest advocate sticking to the schedule for Amin. This time there was no room for schedule, and everything was random, spontaneous, and really fun. I can not really say that Amin was not affected by it, but most of the time he was able to deal with the changes by attending, and participating in many activities. My little boy was happy, and my little girl was excited in so many ways. Little that I knew, that this vacation will result in a major life altering event for all of us.
(next post I will be sharing pictures of our adventure)