Monday, November 5, 2012


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. 



 Phew, I am getting off my soap box, but this book is wonderful!  I am grateful for it to share a different view point on life.  To top it off it is an award winning book, that hundreds of kids will be reading this year!

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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