Well, what a difference a couple of days make, after such a great week, things have changed. Thursday night, Quinn did not want to walk in her walker at all, and I thought, that was a little bit different.
Friday started off on a great note, I woke up ready to
go teach my wonderful students about how to be their most creative selves and
create amazing artwork. I even
left the house early enough to go work out, so I was feeling pretty good as I
got into school.
Only to get a call from our wonderful night nurse, that Quinn has a temp
and can’t go to school. I thought she seemed warm when I kissed her in the morning, but hoped it was just to many covers.
So I was lucky enough to get a sub that I love and figured out lesson plans, knowing a few of my classes would love the change in plans,
while other classes were going to be upset not to be using clay, as we had
planned to do. I got things
figured out and was back at home by 9:00 in the morning to let Melissa go home
to get some sleep, after taking such good care of Quinn over night. I had to get sub plans ready, as well
as call bussing to cancel her bus, call school to let them know she was sick,
and call her nurse to let her know Quinn would not be at school as well.
I think this is the first time since Quinn had her episode
at 5 months, in which she coded and had a lack of oxygen to her brain, which
lead to her having to be in a wheelchair, and not be able to control her body
the way she could before, but this is the first time in 5 years that I have not
taken a day off of work for the first 8 weeks of school to take care of
her. Granted she was sick a few
days, and Grandma Martha took care of her a couple days this year. This was kind of surreal that I made it
through 8 weeks of teaching before I had to take off, and made me think back to
days where we spent so much time in the hospital. As we relaxed and listened to music today, she rested, and
whined when her Tylenol was about out of her system. and giggled when she heard
Chrissy walking in the door with Pedilight. I forget how easy it is for me to take Quinn’s health for
granted, and how thankful I am she has been doing so well lately. So our day started out with
watching some T.V., and trying to break her high temp.
When she was finally trying to rest, I decided to read a book,
which was suggested to me, by a friend.
I knew the main character was a girl in a wheelchair, and was told the
character made this friend think of Quinn most of the way through the
book. Well, I’ve had this book on
loan from our library for way to long, but I knew I had to be in the right mood
to read it, as I knew it would probably bring back memories of our past, and
fears I have for the future when it comes to Quinn and her life. So I had to be in the right mood to
read this book.
Well today was the day, and I bawled and laughed out loud through out
this book and I really think the author gave a great understanding of what this
character and her family go though.
I had to stop and take care of Quinn here and there, as well as love on
her and such, but when she was resting, I read, and cried, and laughed, all the
way through the book. Well, the
book is called Out of my Mind, by Sharon M Draper, and it is geared toward
teens and preteens, so it’s an easy read, and I saw my family in this book so
much. I saw characters that
portray friends, and family. I saw
moments that I can relate to on such a personal level. The character in the book is older, she
is in the 5th grade, but she talks about things in ways that really
made me think this author really did her homework and really understands the
situations we have, when we have children with disabilities. Talking about how getting ready in the
morning is not laying out clothing, and making toast as you run out the
door. It is unplugging machines
that monitored heart rates over night, wiping drool off of cute cheeks, and
listening to the most beautiful babbling, as you carefully pick up your
daughter who is giving you the potty sign, to carry her to her special potty
chair, to see if she can get her body to work with her mind, knowing she needs
to go to the bathroom. Placing her
into her shower chair to wash her, and have her giggle as you wash her hair,
and complain when you brush out the knots. Get her dressed, after giving her all her daily meds, that
you got ready the night before, knowing you would not have that kind of time in
the morning to get everything done.
Getting suction machines ready and notes posted for the school nurse
letting them know what kind of night Quinn had. Watching a few jerky movements, as she wakes up in the morning, and hoping it does not lead into a seizure. Getting braces put on her feet, and trying to make sure she
does not drool all over your shirt, when all you really want to do is cuddle
her up and love on her for a few minutes before you take off to get to
work. I loved how the author did
such a good job showing the real side of someone who is handicap, while still showing
how amazing this child is. Showing
how much her parents loved her, while still showing how they struggled with
caring for her, sharing how amazing she was, and how good they have it,
while being realistic about their life and the challenges they face. It captured my fears about how I want
her to have good friends as she gets older, but I know that might be more
difficult for her, and that is hard to accept. It does makes me so grateful to hear how Quinn’s class has kids
that love her and want to understand her, and I hope and pray that continues! Again, I'm so thankful for the positive role models in her classroom, who continue to show the kids that Quinn is an amazing kid and it's wonderful to be friends with her.
Oh, I strongly suggest to read this book, it’s a quick read,
and can really explain how it feels to have a daughter like I have. Granted the story line is geared toward preteens, but the overall story does show a pretty good view of life for someone like Quinn. She is amazing, wonderful, and so
sweet, and kind. She is so easy to take care of in
so many ways, as she is well behaved, and easy to have around, while in other
ways, she does take a lot of extra work.
I know Quinn has made me a better teacher, a better
advocate, a better mom, and a better person. She helps me slow down and be thankful for the small
things. She brings out the good in
others, as we have folks holding doors open for us, and sharing stories about
someone they know that Quinn reminds them of. We see people work so hard to help Quinn be her best, and we are so thankful for that! At the same time, life is not always easy, but I don’t know
of anyone who has an easy life, and with every battle, we become stronger and
learn life lessons that make us more apt to handle the next issue we get.
Well, back to Quinn. We are still home today, I think since Friday morning, the two of us, have maybe slept 15 hours total. I know Quinn is exhausted, but every time she is almost asleep she starts coughing and wakes up. Finally last night she slept in my arms, and it was so good to see her finally sleep. As of midnight last night, she has not had a temp either, so I hope that continues. Now we just need to get over this cough. I am praying she feels better soon, but it has been nice to cuddle up with her, and feel the love, or see her melt into her dad and rest comfortably. In all the frustrations we all have, we can choose to focus on the negative, or find the positive, and not that it is easy, but having the time to cuddle up with Quinn over the last few days has been wonderful, granted I'm sleep deprived, and she is sick, but getting a few good giggles and great hugs make it worth it. Having time to read a great book was also nice. Seeing her finally sleeping peacefully is also pretty wonderful.
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