We have footing or a base of some sort, I'm not great with the wording, but more stuff is going on with the house! YEAH!

Quinn is not in the picture and I did not go around to get the picture because it was a muddy mess and I did not want to have to clean all the mud off her wheelchair if I took her down there, so once it drys out again, I'll add a few more pictures.

Way way back in the day, I ran across this book, and fell in love with the idea. I wanted to get Quinn involved in something like this, but at the time Quinn was so young, and I was not prepared. Well, Quinn had her first dance class last night. I wish I could say she loved it, but that was not the case. We got there, and she started fussing, and complaining. It was something new, and she had not had a nap, so she was grouchy. Getting to the dance studio was an adventure. There is a Tatoo shop right below the dance studio, and when we got there, I was not sure how I was going to get Quinn up the stairs with her bags and her walker. Well, thanks to a very nice guy walking out of the tatoo shop, we got everything up the stairs. I was sweating and tired after getting everything up there, so Quinn was a bit put off by that as well. So we got her in her walker and in the room. She was already starting to pout. She even knew a few of the other girls in the class. There were girls in wheelchairs, and girls without. All the girls were adorable and had their own set of disabilities, but were precious and amazing in their own way. One of the little girls, after every direction, would tell her teacher, I don't think I can do it, my body does not let me do that, the teacher would say, you are doing wonderful, and in turn she would beam and keep working hard.

Well, Quinn started off with apprehension, and I was going to try to get out of the room, to give Quinn some of her own time, but that did not happen. After a full out cry, I pulled her off to the side, and she calmed down. In hind site, I think her walker was pinching her leg a bit! Opps! So we readjusted, and she danced by me and watched most of the rest of class. I think next class, when Quinn's therapist that she knows is there, she will do better! We went out and got her a special dance outfit, and are waiting to get her new shoes after we get her new braces, so be prepared, pictures are coming in a few weeks! So hopefully next class will be more successful, but we are starting and that is a big deal!

Thanks to our dance teachers for being willing to offer this class! It's a big deal and we are excited!

I read the book Journey out of Silence by William L. Rush, over the weekend and it was a wonderful read for me.

http://www.amazon.com/Journey-Out-Silence-William-Rush/dp/0939644215

It is a book, that Chrissy loaned me over a year ago, and I tried to read it a few times, and simply could not do it at that time. My personal stories in my life, but even more so in my head were getting in the way of my reading it. The story of a person with disabilities was getting to close to home for me and sometimes I want to simple live a life of ignorance, so I don’t have to think about it or accept my own families story. That sounds crazy, as I do accept Quinn and everything about her, whole heartedly, but I do worry about how others will accept her, and that does bother me. Which is strange that I still feel that way, because we have never really had a bad experience where I have felt that way. I thank God for that! Well, back to the book.

Willima Rush, has Ceriabal Pausley, and writes about his life, growing up with a disability and how it affected his life, for the good and for the bad. As I read the last few chapters of this book, Quinn was cuddling in my arms. She still has a cold and could not get comfortable, and continued to whine and cry until I picked her up and she cuddled into my chest, falling asleep almost instantly, and those are the moments that take my breath away. The moments that I don’t want to have end. I don’t want her to grow up to fast, because having her cuddle into me, is the best feeling in the world. She calmed down and fell asleep within moments, and those are the moments where she is my little girl, and I’m her mom, and they don’t involve wheelchairs, or feeding pumps, or meds, or anything, just the importance of a good cuddle. Oh how I appreciate those times. That is in a sense what Rush was getting at in his book. With help he could overcome so many of the issues that got in his way, he just wanted to be loved, and sometimes a wheelchair and that stuff would get in the way. We all just want to be loved.

The one quote that really got to me, (it got to someone else too, as that page corner was turned down already.) Rush was talking about how some folks were the do-gooders who chose to give instant sympathy rather than sincere empathy. Rush talked about how he had to weed those folks out and ignore them. I have to say that was me. Before Quinn, I always had a soft spot for my students with disabilities, and I did give them sympathy, and thought I was doing good, and gave them a pat on their head, and did not expect much from them. Quinn has taught me to be empathetic and at the same time, look past the outer shell, and have personal and specific expectations for everyone. As we can all learn from each other, and we all have so much to offer.

In the book, Rush continued to say how he was healed throughout his life, as he was able to do almost everything he ever wanted. It might not have been the way he planned, but he could get around, he could talk, he got a job at the paper, but at the same time, there were things he still wanted so desperately. He wanted to be loved. He talked so wonderfully about his parents, and friends, but he really wanted to find that romantic love, and after I did a bit of research on him, on the internet, I was so glad to see that he did get married. Wow, a wonderful ending for him, as he said that was his number one wish.

He ended his book by talking about Dr. martin Luther King Jr.’s speach, “I have been to the mountain top, and I have seen the promised land.” His promised land was the people who loved and accepted him for who he was. “…….We as a people will get there….” King continued. Rush added, “I know that people with disabilities will get to the promised land. All it takes is becoming educated enough to educate others that we’re merely humans.”

I hope with all my being that Quinn and I can continue on that path to become educated enough to educate others on that exact fact, that we’re merely humans. I think that is why I get emotional when reading this. I know that he has made a difference and I hope we get to make a difference as well. Every single one of us has so much to offer. I am blessed to have some amazing teachers who I consider friends who continue to teach me how to be a better person, and I’m so thankful to have them guiding me. I’m thankful for Quinn to keep me grounded, and help me remember to take the little things for the amazing adventures they are. Not to cast them aside, as I could have so easily done. I still have so much learning to do, so Quinn, as I look down to see you sleeping so sweetly, you better get your rest, because we have a lot of learning to do. I love you so Quinn, and I can’t wait to remind you of that when you wake up!

Thank You Mr. Rush, for refreshing my soul, and teaching me how to share a story, and not give up! I was inspired.

8-26-11

“My dear doctor, I’m surprised to hear you say that I am coughing very badly, because I have been practicing all night.” John Philpot Curran

Yup! All the coughing in our apartment has got to be frustrating our neighbors! Well, my kids at school make me sick! I told that line to my chiropractor, and he started laughing so hard, he had to stop. He also had to add in, you mean physically right? yes, mostly I do. :) Then Tuesday, Quinn got sick too. She could not even make it through her therapy session. Luckily Quinn does not go to school on Wednesdays, it's her day to learn and play and rest with Chrissy. Well, I don't know what kind of magical powers Chrissy has, but I dropped off a sick girl and picked up a girl who was feeling much better, out rocking on the hammock with a big smile on her face. In fact, both of us are feeling better, but we have that deep hard cough that hurts your ribs, I wish I could be sick enough for both of us! Well, Quinn got to go to school for the rest of the week, and did pretty good. I can tell she is worn out, in part to her cold, and in part to the hard work she is doing at school.

I tell you what, we did so good over the summer staying so healthy! School gets going and we are worn out and that nasty cold bug jumps in! So we are once again going to rest over this weekend. Get out for a few walks and that is about it! Oh, we do want to get a few of those yummy Colorado peaches to eat over this weekend, but that is about it! Not to exciting, but so much better then it could have gone when we started getting sick! We are just thankful that we are already on the mend! Now let's just keep it going in the right direction!

8/22/11

Quinn's first day of school outfit! For anyone that does not know, I'm an art teacher! I'm thankful Quinn was ok with it! As her taste in clothing is starting to change, so who knows what she will be picking out next. She got fitted for her new "Magic Shoes" today and choose a space theme with yellow straps. Not what I would have expected, but it's good to have her making choices!
Quinn still sound asleep after getting dressed!
Bright and early with Chrissy. Finally Quinn is waking up!
Waiting for the bus with her wonderful nurse Nadean, look there it is!
There she goes, off to Preschool! Take good care of her! She is my most valuable treasure and I love her so!
Quinn's First Day of School

8-19-11

Well, this is going to be a long journal, so grab a cup of hot tea, or what ever and hunker down. I’m trying to get all my thoughts in order to share all the fun stuff we are up to. Let me also add a disclaimer, Quinn has a cold, and I’m back at work, so I’m a bit tired, so hopefully the story comes out and the muddled mess that I feel is all jumbled up in my head is not so obvious.

First of all, as I said last week school started for teachers, and this week school started for kids. I can tell it’s started, as my throat hurts from talking so much. Going over procedures, finding out what happened this summer, reminding my students of how much I care about them. So it’s an exhausting week! I also struggle with how to get everything done. Working to get my job at school done, as well as my job as Quinn’s mom, let alone being a wife, friend, and dog owner. I think Blue, our dog, has given up on me and waits by the door for John to come home and give him some attention! By the end of the summer, Quinn and I have a great routine, and we are doing so well. Then it’s back to work. I love my job, I love the kids, and I love getting creative with how I teach them art. I do not love giving up my time with Quinn. However it’s a mixed blessing, because I miss Quinn, but she is with Chrissy, who is amazing, I’ve said it over and over, but can’t stop saying it. She is wonderful, and better then go on and on talking about her, check out what they have been up to lately. They took walks, went to the fair, read books, played games, polished fingernails, and loved on each other like no one’s business. So instead of me feeling like I’m missing out on Quinn time, I’m thankful she gets to hang out with Chrissy! Today is the perfect example, Quinn wanted to go shopping, so they did, and she went potty 4 times today! Chrissy also told me how Quinn said "I'm awesome". Wow, she does not do that for me! I’m feeling good if she will go for me once or twice a day!











Chrissy is also taking Quinn to therapy for me, and I’m meeting them there after school! I’m so thankful for that, as I don’t know how we could do therapy without her help!


There was one day a few days back where my mom hung out with Quinn and during that time, Quinn ate and ate and ate, and did great! YEAH!
Quinn is loving the fact that Casey is going to be spending more time at Chrissy’s and as they were waiting for the bus, for Casey to ride on, Quinn was in the best mood. In fact I hear she was a bit bummed out that she did not get to go to school on that bus. She starts on Monday, and is very excited!

Talking about school, today we had Quinn’s IEP meeting, and Quinn was very interesting. She was sitting next to Chrissy, and doing great, singing quietly and listening to what everyone was saying. Then she told Chrissy she wanted Nadean, her school nurse to sit by her. So they switched places. Almost as soon as that happened, Quinn started spitting, that has been her bad habit lately. We found that so interesting and we called Quinn on it, and she stopped. Chrissy told Quinn and everyone how she puts Quinn in timeout when that happens, and Quinn stopped spitting! How crazy is that. What a stinker!
We also came up with goals, and I could not be happier with our support team at school. They are motivated, and caring, and are willing to hold Quinn accountable, and that makes my heart happy! So let me introduce most of her teachers and therapists, and nurses.

Oh, I’m giving a preview of next week, we picked up Quinn’s first day of school outfit, and I don’t think we can ever have a better outfit! I love it! LOVE LOVE LOVE IT! So, I’m already looking forward to sharing 1st day of school pictures with you.

As for Quinn’s House – it’s on hold thanks to all the rain! It’s official that we won’t be in the parade of homes in October, so now we don’t have to rush, and it will get done, when it get’s done! We are simply thankful for all the hard work that Greg and everyone continues to do.

Spending time with family really is priceless!




A great quote I came across!

Most people don't know there are angles whose only job is to make sure you don't get to comfortable. The know how easy it is to fall asleep and miss your life!

What a week! Where to start, well school is back in session for the teachers, so Quinn has been hanging out with Chrissy and a bunch of girls over there, having so much fun! While I have been working like crazy, as we have moved back into our school, after being at a remote site while they redid our school. Well, it's been a lot of work, as is obviously by this story.
I forgot to pick up Quinn! Yes, you read correctly! I told Chrissy this morning, I would be at her house at around 4:15, Chrissy reminded me that my daughter had therapy, and I thought, oh, yes she does, I will see you there! Well my mom and I left school at 4:20ish, to go to Chrissy's house to pick up Quinn, and I got the sweetest call from Chrissy at 4:30, asking if we were ok. I said yes, we are fine, just got caught in traffic and will be to your house shortly, and she very nicely said, well we are at therapy! So now I'm the mom that forgets to pick up her child! Nice! I blame it on being exhausted from moving and unpacking lots and lots of boxes, but yes, I have now forgotten to pick up my daughter!

Another fun story - Quinn has always loved being outside and going pretty much anywhere. Well, the county fair is going on right now, and Quinn loves it. She however loves her friend Casey more. So Chrissy asked the girls if they wanted to go to the fair, knowing Quinn would say yes. Well, Casey did not want to go, it's hot and she wanted to hang around the house, so Casey said "no", she did not want to go, so Quinn said "no" she did not want to go either! Wow, it's starting already at 4 years old. Choosing to do what the older cool kids want to do! What in the world? Where did my little girl go? Uggg! On that same note, we had open house at school tonight and I saw a bunch of my high school kids come back to Zeman, and it's so good to see them, but my Zeman kids are growing up too! Ugg again, I better sign off before I get all emotional! Where does the time go?
Blessing and thanks so much for checking in on us!
Susan

8-4-11

Wow, Lots of posts this week!
Yesterday I drove by the lot, to see the digger getting dropped off, then today Quinn and I went and had tea with Diane at therapy. Quinn lifted the cup to her mouth, almost totally by herself! Diane and I both got all giddy! Then we went back out to our lot after therapy to find a big old hole! Wow! That digger does not mess around!

8-12-11 Pt 2

Here is Quinn hanging out in her hospital room. Relaxed and chilling!
Well another update! We are home! We had a great afternoon, we even got a couple of naps in, and Quinn did great! So we are home! Thank God for a great surgery day, with no complications, and at the same time, we love the nurses on the 5th floor, it's always nice to see them, but so nice to be home!

8-2-11

Here are Quinn and Grandma before surgery in the Cares Unit, she has her duck, her bear, and her music, so she was doing pretty good!

Here is Quinn's throat. You can see her vocal cords, which look beautiful, and the white thing in the picture is her trach, so there you go, she is beautiful inside and out.

Well we just watched Quinn get rolled away to surgery. You would think this would start to feel usual for us, but it doesn't. Granted I know the procedure. A call a couple days ahead of time to talk about Quinn, her meds, the procedure and so on. Then a call to follow up on insurance and paperwork. Then getting to Children's Hospital at 5:45 in the morning. Before that we have to do meds at home at 4:00 in the morning, and then load up in the car.

Once we get to Children's we check in in the lobby, and they have their act together, because we have already done most of the paperwork, it's pretty simple. We go back to a CARES room. I know the letters stand for something but I don't know what for sure. Basically there are lots of rooms where we get all checked out with blood pressures, go over meds again, talk about Quinn's history, which is a longer talk! We talk to nurses, Care partners, doctors, and this time we talked to Tracy's (our Media Specialist at Zeman) sister, who is in charge of making sure kids feel spoiled rotten and comfortable.

We then got to relax for a bit, then we talked to the anesthesiologist, and I think I always kind of freak them out, because anesthesia is what got us into some of the trouble we have. After talking to her, I ended up talking to a couple more anestesiologists, and I appreciate how involved they are, and we ended up getting two for one on anestesiologists in with Quinn for her surgery.

I get all teary every time I see her go into surgery. No matter if it's a "big" or "small" surgery, they all are a big deal for us. So after I got myself put back together, and saw Quinn off, Grandma Martha and I went to have a bit of breakfast in the Children's cafateria. After we got back to the waiting area, not more then 10 minutes (about an hour total) went by and Dr. Sewell was walking out to see us. Wow, that was fast. He said Quinn could not have looked better. Everything went well, and she looked perfect, so we don't have to worry about any scar tissue or anything. Whew, I love to hear that. So now we are hanging out waiting for her to get out of recovery, then up to room 503 to wait and see how the anesthesia wears off, and we might just get to go home this evening!

I thank God for the wonderful surgery and continue to pray that the rest of the day goes as good as this first part has.

I think everyone should come and sit in the Children's hospital lobby. Sip on some hot tea and listen to the water running down the water feature. More then that, you can watch. Watch the parents who are just as nervous as I am when Quinn is in surgery, some parents are here for months at a time while others are new to this experience and have the butterflies like crazy. Most important, you can see the kids. Kids in all kinds of contraptions. Walking in super cool boots, chairs of all shapes and sizes. Kids who look all types of different ways, and then as you look closer, tubes of all colors and hooked into all kinds of machines. Keep looking a bit closer yet and see the smiles, see the love, see the passion, see the determination. It's an unbelievable place, and every time I have time to sit, think and watch, I am amazed and inspired. What a magical place this is!

Update: We are out of recovery and hanging out in the room, and just get to relax and rest, Quinn is doing great! Smiling, and jabbering, and looking beautiful! I'm so thankful she is doing so well!

Wow!

I've been wanting to show you how Quinn can roll down her green mountain, all by herself! We had so much fun at therapy today with Suzanne! By the end Quinn was talking up a storm, saying "Roll" "Go" "More" and what a great job rolling all by herself!