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Monday, September 5, 2011

Filled with Hope and Fear, part seven...

We walked through the door to the welcoming voices of Mark's Uncles and Aunts. They are pretty aware of Teale's sensory issues and don't push to touch or hug her. A reminder is usually appropriate as they see her very little, a couple times a year at most. She is a child who hates being touched, unless on "her" terms. She even reacts in anger sometimes to the slightest rub of her arm or pat of her back. I am constantly conscious of this and often need to warn people of her strong feelings about this. I have a dear old friend who likes to "push it."She will touch Teale constantly when we are together. Teale somehow usually takes it from her, never blowing up anyway, but it creates tension. I worry she will melt down because of something so simple as respecting her need for space, which could in turn ruin my time at the friends. There was a time in Teale's life we thought we would be able to "break her" of this by giving her a lot of sensory input. Now I just kinda except it, as part of who she is. I can't say I am completely fine with it, who doesn't love giving their kid a huge hug or want to hold them when they are hurt or sick? I push it too sometimes, but I know how much to push usually and if a meltdown occurs, well I have to deal with it. She will "take" bear hugs, sneak attack hugs, squeezes between Mark and I will sometimes make her laugh that we got her. I ask for kisses almost daily and occasionally she'll allow me to kiss her forehead without too much drama, always wiping my kiss away. So as I walk into new settings, into places where people may hug to greet each other I am constantly aware of Teale's needs. As we finish our greetings, she finds a high chair to sit on at a counter and I realize she is tearing and the color has gone out of her face. Teale never cries. In her twelve years of life I probably could count the number of times she has had actual tears from pain. Those few times have been with major injuries, like the two times she broke her leg, we knew it was serious because of her tears. Otherwise she often shows pain with anger. As I look at her, her color is so off, she is actually grey,  causing me much alarm. I ask her what's wrong and pointing across her stomach to her upper right causes more concern. Is it her liver, her gallbladder, her appendix? Her color scares me and I start to worry about her throwing up as she looks incredibly clammy too. We just went through a stage of her being sick and vomiting a week ago. She does not know to vomit in something. My mind races, both Mark and I try to convince her to go outside with us. She seems to be in genuine pain as the tears roll down her face, not even ten minutes out of a hellish 6 hour car ride and all I can visualize is a trip to emergency. I think about the hours we would spend and the lack of understanding we would face. Ironically her GI specialist is in Boston, but that is about an hour away. We finally convince her to go outside with us. She lays down on the hammock swing and I text her pediatrician. In no time my phone beeps that I have a voicemail, cell reception here is bad and his call went straight to voicemail. He is worried and thinks we need to talk, probably see someone ASAP, grey is not a color doctors want to hear. I look at her again to make sure I am not over exaggerating her color and realize she looks dead, I even say it out loud to Mark. (she has no reaction at the time, but later when she is better she repeats my comment, asking me "What happened, you thought I was dead?") Her chest is rising and falling with each breath, but her color is so bad and her eyes are glazed over, almost rolling back. I realize a seizure may be coming. I yell for Mark and tell him I am going to call our pediatrician back, I need to walk to the van, about twenty yards from Teale, where I found my cell worked. I'm also going to grab her diastat, the emergency seizure medication, just in case. As I walk off, another car of relatives arrive, I explain quickly what's going on, hopeful Teale may come back with their arrival. This could just be car sickness I keep telling myself. The doctor I end up talking to confirms that thought, but again says grey is alarming and we would want her seen. I am kinda an expert at this stuff though, as I have dealt with much medically over the years with Teale. I push, asking if we could wait it out just a bit longer, see if her color comes back? I hear Teale now in the background and share that her voice sounds happy, like the cousins have her laughing. I think we are going to be ok I tell the doctor, emphasizing we will go in ASAP if we are see anything else. Her color had been grey about a half hour, but as I walk toward everyone, I hear Teale's laughter. She is up and has a pink to her complexion again. The many mysteries of Teale. We may never know what that incident was, but looking at her smile, I am thankful she seems to be ok and that she in my life.

1 comment:

  1. I, too, have a child who doesn't like to be touched. I have learned to accept it, although I don't actually like it. I love to hug, and the realization that I'll never get my fill of hugs from my only child sometimes seems like a punishment. I used to hug her anyway, but it became harder and harder to subject myself to the rejection I felt every time I felt her stiffen. She now doles out hugs when she thinks I really need one, is grateful for something special I have done at her request (that's a whole other story), or when she thinks it will sway me to agree to her request. I know she loves me, she just does not use touch to show it. Sometimes I feel cheated, but then I think about what a wonderful, smart, beautiful, funny, responsible person she is and it doesn't matter as much.