Tonight I was talking to a friend who said she had heard that everything was not "fine." She was a little upset that I told her things were fine when they were not. It is the dreaded question of "How is Rylee??" We are judged relentlessly on the answer to this question. Truth be told, I don't know what the right answer is. I sense that people don't really want the truth or don't really want a long drawn out answer. I have blogged about this before. There are times that I just don't want to get into it and there are times that people are asking out of politeness. At these times I say things are "fine" or "we take it one day at a time" because I really don't know what to say. Here's the deal, nothing is fine, nothing will ever be fine again. We hardly ever have a full day where things are great or even fine, that's the real truth. We are trying, and doing the best we can. Sometimes we are barely staying above water and others we don't tread as hard but hardly ever have a day that is truly fine. I refuse to accept this is our "new" normal and most days are not fine. There it is out in writing for everyone to see. This was not an easy post for me but this is where we are at. This does not mean we don't have fun because we do, we make the best of what we have to deal but if everyone knew the real truth about what life is like you would probably run for the hills. It's the little things that keep us going. In a way I am thankful that we understand to appreciate the small things and not take those things that people over look everyday for granted. Life is not that bad and I wish everyone could see that. Step back and enjoy what you have.
Wow is all I have to say. I remember sitting at gymboree with Drew when he was only 6 months old and everyone talking about being on a "list" It was insane!!! It was almost to the point where we considered moving somewhere that did not have "list" for nursery school and school choice or having to change your religion to get into places. I am proud to say we made it through both. I honestly can say we could not be happier with our decision to send Drew Temple Judea. For us, and I know there will be people to debate this, Temple Judea is by far one of the best Pre-schools here. Everyone knows our saga and in the midst of life changing events they were there for Drew in every way that he needed. I could be at a hospital 2 hours away and not worry one bit about the care he was getting there. They went above and beyond anything that I would have ever expected. If you live around or near Fort Myers I highly recommend this school. They will love your child as if they were their own, they will except your child no matter what their limitations may be, your child will be safe in more ways then you could imagine. We are sad that our time with Drew there as come to an end and pray that Rylee will be able to attend in the fall. There is NO where else that I would send her.
Jamaica feels like a lifetime ago but that's where I left off and promised I would go back. First I want to start off by saying we had a great time. With that said, I will do my best to try and explain all that happened with out the intent of making it sound negative. We needed this week, we needed no Dr's, therapy and the constant reminder of our daily life. It was a wonderful week. It was so amazing and sad at the same time to see Drew so carefree and happy. At one moment during the trip I started to tear up because the realization hit me that I have not seen Drew so happy and free since Rylee was born. He was just having good old fashion fun. I ache for him to have that life everyday again. I love that he was able to have it again for a few days. There were a group of young guys that included him in their daily volleyball game. I don't think those guys realized the impact of what they were doing. I wish they knew, and thank them for allowing Drew to feel like "one of the boys" Now on to Rylee. Rylee was not having a great few weeks. She had a really rough six weeks. It was flat out awful, no sugar coating it. Our trip was at the end of the really bad stretch. She was not great but at least not at her worst. She never went in the water the entire time. However, she LOVED to feed the fish. I wish she was feeling better. I know this is going to sound crazy but until this trip I never thought that we had a child with "special needs" I know, totally crazy but I didn't. I now do, and things are forever changed. We had to get all the clearances to travel with all her supplies, not an easy task. I was pleasantly surprised when all went very smoothly. You all know that us and smooth don't usually go together so I of course am waiting for the ball to drop. It dropped and exploded the next day when her tube broke. I mean almost beyond repair. We had to call the emergency line at ACH and have them call Jamaica. Our options were very limited. We could pack it up and go home one day into our trip, take her to the Jamaican hospital or feed her with the G-tube. We opted to feed her with the G-tube. Not the smartest idea. The tube was to thick and heavy for her and she was in severe pain and started to bleed pretty bad out of the opening in her stomach. This was not going to work. Thank God we know the people there and they went out and bought us multiple types of glue. James was able to fix it well enough until we got home. We love this place and had a great time. We can not thank Lucio and Pinky enough. If I could only figure out way to let them know what it means to us to be able to get away from it all.
I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.