Stop Staring at Me!! :)

I can sometimes be paranoid about Tucker and his condition(s).....cue Chris's eyeroll if he even reads this! He thinks I am always too worried! But one thing I have never really worried about or even noticed is when people would stare at Tucker and all of his contraptions. I would either assume that they were staring at him because he was so cute, or maybe the denial in me just wouldn't even notice the stares. Many people asked honest questions, which I was happy to answer. I know there were a few times when we went places and his nurses would notice people staring and get angry. I either didn't notice them or laughed it off, saying they just didn't know what else to do. Now that Tucker's trach is out, it is not (very) obvious that he is different. If you try to talk to him or ask him a question, it becomes obvious. If you try to make him pay attention to you, it becomes obvious. Sometimes I think it is obvious by the way he walks and runs, he is definitely less steady than other kids his age. But....just walking around somewhere in public holding my hand, we usually get polite smiles, or maybe someone will say he has a cute shirt. So the other day I was a little concerned when people kept staring at us and staring at us. I had taken Tucker to the hospital to bring the NICU a copy of his naked neck announcement. I had not brought an updated picture of Tucker to the NICU in probably two years, and I wanted them to have the pics of him without his trach. One of his primary nurses was there, and thought he looked great. He was not too happy to be there and kept saying "home" and "car", even though we weren't going home, we had therapy next! So on the way out we took the elevator, (Tucker said evaytah, it was so cute!), and Tuck sneezed. EVERY time he sneezes, I have to check his nose to make sure snot isn't everywhere.....ahh the joys of a trach free kiddo, haha:) So this time I checked and he seemed to be snot-free. As we left the elevator, crossed the courtyard, and walked through the physician's plaza, people were staring at us. I thought it was odd, but kept walking. I stopped by the gift shop to show Tucker some stuffed animals; when I looked down he had the hugest, greenest snot all over his face! And he was just smiling away:) So Chris said that should definitely get my Mother of the Year award on lock! I told him I've done much more deserving things this year, leaving snot on his face in public is pretty mild, haha.

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We have several countdowns going now....one for the end of the summer of therapy (Tucker and I are getting pretty worn out!), one for the new school year, one for the Mito appointment, and now one for his academic testing. The Mito testing comes first on July 27th, the academic testing is scheduled for Aug 4th, the end of the summer therapies is Aug 6th, and Tucker's first day at big school is Aug 11th.

The psychologis called me this evening to say that they decided to pursure further academic testing for Tucker. Her supervisor (a well-respected PhD with years of experience) agrees with her assessment that Tucker likely has autism and MR, and they feel it would be best to do the testing and get a diagnosis now. Once that is done, they will very likely recommend putting Tucker on stimulant medication for his attention issues.

I have made my feelings and emotions about all this pretty clear in my last post. It felt so good to get it all out! It would have been so hard to have that conversation with each one of my friends and relatives just out of the blue, but something about blogging made me feel better.

One of my best friends read the post and told me that it was so refreshing to read how I really felt, to not feel like she was reading the sugar-coated version. She said it was nice to know that I do struggle and have hard days...of course I do! But I didn't realize just how hard I have been working to hide that fact....that can get pretty exhausting! So I am glad that I was honest.