Florida Girl

This morning I went to get in my car to drive to work. And there was ice covering my windshield! Dave mentioned to me to just use my windshield wiper fluid, and I tried this, but it made it worse, so I had to pull over to the side of the road in my neighborhood because I could not see a thing. I got out and thought, what do I do? I stopped, of course, to update my facebook status describing my dilemma (and people left many helpful comments, hours after I had already de-iced the window). I didn't have a cup of water or a spatula handy, never ever would I have thought of using a credit card, and obviously I lacked knowledge of such a thing as a defroster (I've since confirmed that our car does one). So I popped the trunk and got Anna's rubber rain boot out. It did the job just fine, and my gloves kept my hands from gettting wet at all.

I've been completely out of my element all week. The cold has been ridiculous. I don't even know how to dress for it. I don't know how to get our kids dressed appropriately for it. Everything seems so hard. I don't know how everyone else everywhere else manages to survive. Also, I got some fake fingernails put on this week, and I have been completely awkward and struggling to do every little thing. I have a really hard time texting, typing, dialing the phone, taking my contacts out, etc. This was our first week back to school and work, so that has been an adjustment also. Plus, I am working way more hours this week than usual, and feel like I have spent most of my time in the car. Everything just feels wrong and crazy. It is Thursday and I feel like I have barely seen Dave or the kids this week, even though I know I have. I've just been going back and forth between such a sleepy funk (does the cold make humans want to hibernate?) or an overwhelmed, stressed-out state all week, and I am so tired, but when night comes I have been waking up all the time again. I can't remember when what happened. I feel a little unhinged today... like maybe I've done or said things I can't remember. I think it is just from being super busy every waking second and then being mostly awake every sleeping second. I just stumbled upon 2 very funny texts from a friend, and I remembered them, it was just that I thought I dreamed them last night. I almost called her this morning to tell her about the funny texts she sent me in my dreams. Plus, I apparently ate a peanut butter and jelly Uncrustables sandwich last night. Don't remember this, but there was a wrapper next to my bed. I hate when I get into this middle-of-the-night, can't-remember-eating thing. No, I don't take Ambien or anything like that. I also think that I watched some Seinfeld last night. Two nights in a row prior to last I kept waking up because we were on tooth fairy watch at our house. Jonathan lost a front tooth one day, and a bottom tooth the next. He was so sweet, he told Anna that he had another very wiggly tooth, and when that bottom tooth fell out, he would share the tooth fairy money with her. Today he slapped her in the face because she kept grabbing him and kissing him. Somedays he is unbelievably sweet to her, and I think, is this kid for real? And then along comes a day like today and I think, yep, he is just a normal kid. Am I happy he slapped her? No... but I could kind of see his point. He had asked her repeatedly to stop it.

Also making me feel a little out of my element this week... Anna moved into 5 morning preschool. A spot suddenly opened and we were very blessed to get it for her. It is just a new routine to get used to, and because I am filling in for someone at work I am not getting to pick her up at all this week, and not until Wednesday or possibly Friday of next week will I get to pick her up. Her wonderful Nona or her Papa Larry or her Dadddy will be the one picking her up, so I know she is fine, it just triggers my motherly guilt.

I also feel guilty because Jonathan's legs are acting up again. We took him to the doctor and he will resume physical therapy this coming week. I know that his pain and limping aren't my fault, but it makes me feel guilty. I guess because I feel like I should somehow be able to stop it. We will be searching to get him into a pediatric orthopaedist somewhere in the state. Hopefully, the right doors will open and we will be able to get some real help for him, or at least some real answers. I was telling a coworker about his issues since I had to come in late after the appointment. She has dealt with some very serious health issues with her son, and I felt bad even talking about it to her. She has had so much more to deal with... Jonathan's problems seem small in comparision. I keep saying things to people, apologetic things, like, I know it could be worse. I mean, I can't imagine having a more wonderful son than Jonathan. I wouldn't change one thing about him if I could. These leg problems are problems, but compared to anything life-threatening, it is small potatoes. So I know that it could be worse. But, I was thinking later, that no, deep down, I don't really own that type of perspective. I know I can say things like that, but I don't really believe them. When it comes to my own child, I have a singular perspective: him. I am not grateful that it isn't worse. I am mad that it isn't better. All I know is that he hurts, he limps, he feels different, he depends on us to fix everything for him, and we can't. People say things to us, and I feel the accusing behind their questions, why haven't you done anything about this? And the truth is we have done something, or we have tried to do something. We have. In some ways, I think we have done too much. I agonize over whether we should have ever put him through the surgery and the casting before. I think people can't understand that there can be a problem without a straightforward solution, an issue without a straightforward name. What is wrong with his legs? Well, I guess something about mild cerebral palsy which has caused mild disablity and contracture in his lower extremities, gait deviation, his right hip isn't set correctly, he out-toes, he can't bend his ankles normally because they are literally too tight to move. I don't know... I don't know what you call it exactly. When he gets really bad, the pain can bring him to tears, and he will just lay around, and he will be physically unable to run. I guess if a bear were after him or something, he would run. It just doesn't look much like running. My dear grandma referred to him as a little cripple boy (she said it in the sweetest, most ignorant way possible, easily forgiven) when he was younger. I am not mad at her for saying this, but obviously I haven't forgotten. But I am thinking now how there is a certain comfort in that term, an acceptance of things as they are. 100 years ago, people wouldn't have asked us what is wrong with him... They probably would have just thought, Oh, he is a little crippled. And there you go. A neat little explanation.

Of course I am hopeful that we will find some great specialist who will have a new understanding of the problem, and a new approach. Our pediatrician said we need a fresh set of eyes to look at the problem. And maybe that will help. But I think it is more likely that his issues are something that are just a part of him, and we will just have to learn to accept them, make modifications to make life better and/or more acceptable to Jonathan. I think it is probably wrong of me to think this way, but after 5 years of dealing with this, it is just how I feel.