Thank goodness, I have calmed down, I have addressed other issues with life and such and have moved on. There is not much I can do with how the state asks questions and I am thankful for the support they do give. So onward and upward.
On a fun note. Denali took charge of her group and the egg drop and their egg is the only one that did not break after a few drops at different heights.
Well Done Denali!
Well, the department of disability has to do yearly checks to see if people still are disabled to get support. The support includes being checked on, and gives hours to have people help care for the child. I won't use this post to share how hard it is to find people who want to care for disabled folks. How hard it is to trust new people coming into your home and taking care of your precious child who is at their mercy. I will say we are thankful for Chrissy and our nurse Katherine that keep us above water right now.
What I want to share is our two hour zoom meeting today. Being asked can she bath herself, no, she can not move her arms enough to do that, well, can she brush her teeth, not unless we pick up her hand to help her do it with us being the motor. Can she walk, no that is why she is in a power chair. Can she talk, well she can when her computer has not gotten broken by a person who was not comfortable using her chair and broke it. (yet another story, why it is so important to have people working with her that understand her and are comfortable with her chair and computer.)
So in the last 3 days can she tell you what she needs, no, unless we can guess what she wants, as she can tell us yes and no, however when she has her device, then yes she can. Can she tell you if she is hurting, can she tell you when she needs to use the bathroom in the last 3 days, again, if her device was not broken, then yes she could, but since it is broken and there is not a replacement she can currently use, then no, she can not. So they mark, no she can not. I want to pull my hair out. This is setting people up for failure in some ways. Maybe I am overly emotional, after having to answer, no she can not put her shirt on herself. No she can not move on her own, no she can not use the restroom on her own.
Let's talk about how she can lean into my kisses, she can giggle and smile at grandma when she gives her obnoxious kisses. Let's talk about how she is the most patient person I know and so forgiving and so trusting. She is willing to try anything and puts up with not getting her point across to me, when I am trying to figure out what she wants, without her device to tell me. Let me share how she will use her computer to make her brother laugh, when it works, or how she can not get it to work when she is asked to give math problem answers until she is in the hallway with her nurse alone.
Then the interviewer asks me if he can ask her questions, I say as long as they are yes or no questions, as her device is not working, and he asks her, does she get frustrated, is she sad, can she work harder to move and help out. After asking her to be involved in the call, and hear all the things that she can not do, she still thinks it through and answers honestly, no I can't work harder to move my hand, I am a quadriplegic and unless a miracle happens I can want it and hope for it as much as possible and my mom can want it as much as possible, but no, I can't. I could see her withering away as the questions were asked. The interviewer said some of the questions are not comfortable even for him to ask but they need to know what she can and can not do. Maybe meet the person, then ask the questions without them being right there in the future. Maybe come and meet them. I think of all her dance friends and their parents being asked these same questions. Her friends that zoom and read her books, how they feel. They know they have limitations. They have bad days, their parents have bad days.
Then they ask, are you supported, are you up for the challenge, can you handle this. Most days a hundred times over I can, we can. But after two hours of you pointing out all the things my daughter can not do, and how we need to work harder and maybe she could. How maybe more therapy would help, but insurance does not want to cover extra therapies. I am reminded how the system is broken. Usually I say I don't know how to fix our broken school systems, I don't know how to fix our broken government, I don't know how to fix our broken water heater, there is so much I don't know how to fix, but my daughter is not broken any more then any of us. She has many more limitations, but she has more strength, more patients, more love, more snuggles, more forgiveness. She has brought amazing people into our lives that I would never know other wise. I read blogs and facebook pages about her dance friends. I see them go to college, I see them in the hospital, I see them in dance classes, I see them struggle, I see their success. I am a better person because of her and so many of her friends. I would not wish the day after her surgery, when she coded on anyone. I wish I could take that day back a hundred times over for her. But I am a better person because of her.
I cried and cried after the meeting tonight. My son asked great questions about why, and I could not answer many of them. I complained to friends, and they helped me. Quinn was exhausted and fell asleep. I went in and whispered how much I loved her and how strong she is, and how I am so thankful for her and kissed her nose. When she sleeps her body moves so much different than when she is awake. It looks so natural, and easy to move. She rolls her head toward mine and gives the sweetest noises. She is loved so very much! Some times it is hard, and I will not sugar coat that, but she is loved so much. I will continue to give her every opportunity I can. I will continue to help her advocate for herself, and I will give her as many opportunities as I can.
I am tired. My heart hurts after being reminded for over two hours all of the things that she can not do. So this is more emotional than usual, but I want to share this side too. I will wake up tomorrow and consider deleting this. I will think how I am sure the grammar is a mess and I am overly tired. I will also remember that this night was hard.
I will instead focus on that moment she turned her head and lifted her forehead into my voice to snuggle into me. That moment where I felt so much love. She is so amazing, and I try to never forget that.
I need to calm down and get to sleep. She knew what she was doing going to sleep after that meeting, getting rid of a hard evening. I need to do the same thing. For all of you that struggle, we are in this together. We all have our own burdens, we have our good days and our bad days. I am thankful for my faith, it has gotten me far. I am thankful for my support system, for the dance mom's, for the special educations teachers and therapists and people who are such good supports.
uggg enough, I got it out and do feel better, not great but better and I guess I will need to settle for that tonight. One more check on on her and then leaving the doors open and monitors on for the night, in case she needs me.
