It keeps spinning, and spinning and spinning

No, this is not about Nick and his spinning obsession, but maybe if I try spinning everything that possibly could I may feel better!

My head is spinning.  I am at a delirious, hysterical point right now.  Everything is funny to me.  I have talked to every home health agency, attendant, doctors, hospitals and state agencies this week alone I am grateful for my unlimited minutes on my phone.  Our case worker even asked me if I was ok today when I started laughing about Ethan's brain surgery and the extension of stay in rehab. 

I am so grateful for the Lord giving me the gift of what I know.......and for being stubborn and loud mouthed :) 

I had an interesting phone conversation with the state agency working with Ethan and Nick yesterday for their 6 month review.  I will try to make this short as it went round and round....

them: It's time for Nick and Ethan's 6 month review
me: great when do we need to have this done
them: it is due this week
me: oh, wow, last minute huh?  How about Wednesday.
them: ok Nick and Ethan need to be at the house because we have to "lay eyes on them".  (this always makes me laugh, do they think we gave them away or they were cured over night)
me:  minor problem, Nick is at school and Ethan is in the hospital
them: can we have them both at home
me: I can get Nick there for lunch and then take him back
them: what about Ethan
me: he is in the hospital until mid May.  Remember we have talked about 5 times about this
them: oh, well how are we going to do our visit?
me: not sure, you tell me...
them: can I call you back tomorrow
me:  sure :)

Kiki, 4 going on 20, asked the inevitable question yesterday.  "Daddy, why did God give Nick and Ethan disabilities?" 
I honestly don't remember what exactly I said, but it went over well because she of course was excited to be able to "teach" them things :)

I am so excited for this Easter.  Jackie and Ethan get to come home for 6 hours so we can be together.  Not in time for church but later in the day to spend time with the family for lunch.  Yes, our lives are chaotic but so filled with love, joy and faith.  God is good. 

Jackie, my wife, my love, my friend......what a strong woman!!!!!!  I could not be living at the hospital for 4-5 weeks and do what she does.  She sleeps there dealing with Ethan, gets up, showers, goes straight to work, leaves and goes straight back to the hospital hoping that someone will keep her company and get her some food for the day.  This is day after day after day............I know I could not do it.  I would have jumped out the window already (and that wouldn't do much since we are on the first floor).

Nick's attendant, Charlie, is a saving grace as well.  He is running our house on the evenings I have to work.  We have therapists Monday thru Thursday coming in and out, he takes care of Nick and makes sure Kiki gets what she needs and she has people there to play with until I get home.  Could not do it without him. 

Ethan is a lucky little boy, and if he was a few years older he would realize this.  He now has 4 different young ladies as his attendants and they are ready to rock as soon as he gets him. 

We have friends and family constantly praying and bringing food and good thoughts.......the saying is true:  It takes a village! 

I am so excited for HEROES camp this summer.  WE have anywhere from 72-81 campers a week.  We have so much planned to best serve all our students.  Never in a million years would I have thought something that started so small and as a trial, would be something that grows this big in 6 years.  We are blessed to serve around 200 families that have children with disabilities every summer.  The best part is, while out in the community working with our students, is educating society about the disability community.

I wish people had more faith in people with disabilities.  If we get harassed one more time about why we do not have Nick on the wait list for a sheltered workshop I am going to blow.  In my opinion, I have never seen or toured one of these that I would put my pet at much less my child.  Granted, some people have to because there is nowhere else, but I am not a fan!  Sorry, Nick can do more than get $.25 a Mary Kay box he puts together while not being supervised. 

Sometimes, I think life would be so much better if I was only surrounded and worked with people with cognitive disabilities.  It is the "typical" people that drive me crazy...........


This weekend, I was able to run in the Warrior Dash.  It was a blast and I loved it.  The only thing O would have changed is I wish Jackie was there and I could convince her to run it with me.  It has been so long since I was able to do something like this, I really "forgot" what is was like to have fun.  Crawling in mud, running, jumping over fire.....not once did I think about which doctor or agency that I needed to call or what I needed to plan or schedule.  I can not wait for eh Hell Run in November.......

I eventually want to get Nick to do something like this with me.  Yes, I know, it sounds crazy.  But, I am not in it to win, but what an accomplishment for him....something else that people never would think he could do.  I always go back to TEAM HOYT.  Whenever I get frustrated and beat down, this video clip makes me tear up and gets me back in focus.  ANYTHING is possible.....  :)