Category: Uncategorized

So, a month has come and gone. We are headed to Dallas later to find out what the craniofacial surgeon has to say about joe’s palate injury. I’m really struggling not to let the “what ifs” and “I should have done’s” plague my mind right now. We did what the doctor asked. I’m not a surgeon. I have to place trust in him and know that he knows what he’s doing. I just can’t turn my brain off…hmmm…could this be where the boys anxiety and worry come from?!? I slept with the boys all night last night. I always lay down with them, but usually I manage to make it to my room. I’m not sure who was comforting whom? Joe had his arm linked through mine until 3:00 am. Then I woke up. I know I have to keep a calm mind and body today as much for myself as for my family. No use in pondering if I did enough or should I have taken him to one more doctor or could THIS be the source of our year long struggle with fever or if he has to have an UNEXPECTED surgery how will he cope? It will be fine. It WILL be fine. It will BE fine. It will be FINE. My mantra for today. I know how lucky we are that we aren’t facing life-threatening illness. I remind myself of that daily. I still don’t like to see my boy struggle. I want what we all want for our children. Peace. Love. Comfort. Right now, though, what I really want for him is pizza! I know, you’re like, “what?!?pizza?!? This does not compute.” I can give him peace of mind. I can CERTAINLY give him love. I can even give him comfort. Really, those three things can be achieved through one hug. What I can’t give him is pizza. this soft diet is wearing thin on us all…especially him. So, here is to good news and pizza for dinner!

I don’t quite know what I expected when we received the asperger’s diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says you aren’t autistic enough to be here…you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent hisday struggling to contain stimms. You don’t see him when he is sad because he feels as if he has no friends. As HUMANS, we all want love and understanding. Because I speak of asperger’s it does not mean I do not want care about the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We are all doing our best to navigate this world and form community. Perhaps, I look in the wring places. Perhaps community is closer than “message boards” websites and blogs. Perhaps, I need to forge a community of my own…

this soft/liquid diet thing is causing some serious regressions: for the mama! we’d finally gotten on a roll of eating some meats for protein; now, we’ve gone back to noodles, carnation, noodles, carnation, mama waffles, noodles, carnation…we sneak some eggs in every once in a while as well as mashed potatoes, but man, this bites. we ordered a product to help boost caloric intake and are hopeful we can put back whatever weight the eldest has dropped already. one week in and it’s not looking good weight wise. i am hopeful (not too) that this liquid/soft diet will do it’s job and let the boy’s pallet heal. if not, it’s surgery and another month (at least) of liquid. this does nothing to improve a seven year old’s mood, let me tell you. it’s not that he wants to eat anything else, it’s that he NEEDs to! ok. pitty party over now. we are blessed. we know this. life is exceptionally good!

pardon my lack of capitalization and my overall bad grammar. i’m just too proud to worry about such things. over the past several months, the eldest has been assessed for aspergers syndrome. as it turns out, he does indeed have aspergers. don’t feel sorry. it’s a beautiful thing to have a mind such as his. he is twice exceptional. i love that phrase. he’s more than twice exceptional, if you ask me. why i’m so proud is this: he came across a book (all cats have aspergers) in my book bag and began reading it. then, he began to ask questions about aspergers. as it’s dawning on him that a lot of these descriptions fit him, he begins to get a little upset. after a few minutes of talking about aspergers and how he’s the same little boy as before he knew, he began to come to terms with it. shortly thereafter, we arrive at his grany’s for a playdate. he is able to think through things and sort them out through gardening. before he leaves his grany’s, he wants to share the book with her. it (him finding the book and me telling him about aspergers) didn’t happen in the ideal way, but he took it and decided to teach someone about it. when we got home, he read the book to his daddy and they talked about it. for a little boy, he has such an AWESOME mind! i love this kid more than i ever knew possible. his little brother decided he has aspergers too…he wants to be just like his brudder. how did i get such amazing little boys? i am blessed. i am fortunate. i am so very proud!

We had our Christmas visit with Teda, Stocky and Auntie Mary Jo on Sunday; a wonderful lunch with pop pop and nana added to the crew. It is so awesome getting to watch my grandparents watch my kids grow up! How blessed I am! Today, we went to see the craniofacial surgeon Dr. Genecov. We got a bit of news I didn’t want to hear…Joe has a two inch long wound in his palate. The good news is that up until this point, there has been no water, or juice traveling into his nose while drinking. We have a month of liquid diet (OMG, what am I going to do for the kid who is already SO underweight and skinny!?!) We go back to Dallas in one month. If the wound has not healed, we will have to discuss surgery. I’m trying to stay positive. This one month liquid diet will be a trial run for bone graft…that’s three month liquid diet! Right now, my brain is spinning…so much to think about…I know what I’ll be focused on tomorrow at 3 a.m. When we go back in a month, I also have to discuss palate expansion; I’m hoping this doesn’t slow us down on that front. He’s almost ready dentally. Mentally, not so much. He hates the idea of the expander and braces. Although, in time, I think he’ll come around. I DO know how much we have to be greatful for! Not many people can say that they have their grandparents around and watching their little ones grow and blossom. We have an amazing and supportive family for whom we are grateful. We have friends that we love like family. What more does one need, right?