Monday, July 21, 2014

Busy Max...


I was talking with one of Max's nurses the other night about the busy couple of days he had.  It started with music therapy, and speech.  Then a meeting with a case manager for his medicaid waiver.  Then the wheelchair guy came by to return his wheelchair and fix his stander.  The next day was Physical Therapy, Speech, and Art.  At night, the nurses came and Steve and I were busying ourselves with getting him ready for a weekend trip. This all happened in two days.

When I was talking with Max's nurse about it, I realized again just how many people we have coming all day, every day.  Max has had a busy summer with Speech, Art, Music, Physical, Massage therapies. Then on Fridays, the one day off a week, we've started to get cleaning services through Max's medicaid waiver.  A cleaning service comes and cleans Max's area to keep it sanitized.  At night, his nurses get here and have the full run of the main floor caring for him.

It leaves little time to sit and write, or Steve and I to sit and chat, or sit and do nothing.  (Of course we're never doing nothing... there's always something needing done around here!)  There is still big sister's stuff too.  And I know we're not alone in doing, doing, doing for our kids.  But sometimes, it's nice to just call it all off and relax.  It's been terribly hot the past week or so.  Too hot for Max to get out and enjoy being out.  So, on Friday, we called off everything and stayed in the cool, in our pajamas and just veg'd in front of the tv all weekend.

I got a little stir crazy and tired of listening to myself talk to Max and the dogs by Sunday, but on the other hand, it was nice to not do anything. I didn't have to put on a happy face for anyone when I didn't feel like talking.  I didn't have to explain how Max's day, or week was to four different people a day.

Don't get me wrong, the people that provide care for Max are precious to us.  Max loves them all, and misses them when they're gone.  When his speech therapist was away for a vacation earlier this month, he told her "it stinks" that she was gone, and that he loves her.  They are his friends, and he really enjoys seeing them.  But sometimes...this introvert momma needs some time to recharge.  I've called off massage therapy for now to get a free day back.  And we're looking for a Friday day nurse to give me and Steve a day to get things done during daylight hours...in the house and away from the house. When Max has to be here all the time, or watched all the time, it really limits what gets done!

Here are a few photos from his busy times lately...

Playing a counting came with B in Speech Therapy...he won!  We're trying to sneak in math when we can.

Giving Helper Monkey some kisses,.  Daddy had just left and gave Helper Monkey kisses when he kissed Max good-bye.  I looked over and he had his monkey right up in his face.  Later in speech he told me "where dad, my call"
Getting stretched in physical therapy.

Max's art - he was making Red Rocks. 

Then went to blue.

One band Max...drums, guitar, and chimes.


It's another full and busy week, after our weekend of nothing.  Since Max told me he was bored of me yesterday, I'd say he's ready for it.  I'm happy to squeeze out a few more hours of no therapies!


Monday, July 14, 2014

Summer Lament...

Max is sound asleep...at 3:00pm, Monday afternoon.

We're in the oppressive heat of summer, and it's not uncommon to find Max asleep during the days.  It's too hot to take him outside, and in order to keep it cool in the house, we keep the blinds shut in the afternoon, which makes it cold and dark...perfect sleeping conditions.

I don't like these weeks in July.  They're hot, and Max sleeps a lot.  In order to get out of the house, we head for the hills, or get out once the afternoon showers have hit.  We can't take him swimming because we can't get him safely in the pool.  Indoor activities don't usually go well with Max.  He talks all the way through movies in the theaters.  Museums are usually boring if he's not with his classmates.  And he could care less about going to a mall.  Travel to family is out because if it's hot here, it's sweltering where family lives.  We know our weather is pretty mild compared.

So, we hang out at home.  Usually he has therapy through the week days.  But, summer for the rest of the world means holidays and vacation.  This means even therapies are spotty.  We haven't had a "normal" schedule all summer.  This leaves days open without much going on, and again, perfect sleeping conditions. There is little to anything I can do to MAKE Max stay awake if he wants to sleep. We learned early on, if he wants or needs to sleep, we just let him sleep.

I have to remember summer doesn't last forever.  Soon, school will be back in and schedules back to normal.  And while I love seeing my family and friends' holiday photos on facebook, it will be a nice break from the feeling of wishing we could go somewhere as a family.  We'll be back on a level playing field...everyone back in school.  Everyone enjoying the cooler temperatures.  No wishing we could go swimming, or go on a trip to a theme park, or worrying about heat exhaustion after a short time in the sun.   We took Max on a bike ride on Saturday, early in the day before the heat really hit.  We were out for about 10 minutes and he was already zapped from the heat.

Yes, we'll get through these awful weeks of summer.  Then we'll be out playing again.  We have a glorious later summer/fall around here.  In fact, it's my favorite time of the year in Colorado.  Until it gets here though, you'll find us in our cave...air running, draining our bank account to keep it cool enough for the dude.  We've been trying to get up in elevation because it's cooler in the mountains. But, that can only happen on the weekends.  In the evenings, once the afternoon storms have rolled through we can get out and enjoy the cooler temperatures. Thankfully, Max is usually awake enough to enjoy it by then.

Last night, we got a rain shower, through the sun, and a double rainbow.  We all got drenched, but it was fun all the same.  A good reminder, it won't last forever...we'll get through the not so fun bits of summer.


Monday, July 7, 2014

Max, Love, and Rock & Roll...

Remember Lily?  She is Max's friend from 2nd grade.  She and her family moved away, but Lily has remembered her friend Max through her time away and has had a mission to help her friend out any way she can.  She raised around $3,000 for his fundraiser by getting her entire elementary school to join her.  They got to do a news story together about it this spring.  And Lily contacted the Do It For The Love Foundation  nominating Max for two wishes to see Michael Franti, and Jack Johnson in concert.  Because of her video letter in to the Do It For The Love Foundation, we got to take Max and our whole family to our first concert together last night to see Michael Franti.

When we arrived at Red Rocks, we went to the will call booth to pick up our tickets and VIP passes.



We parked in the handicap parking and took the shuttle up to the top of the amphitheater.  Once up there, we met with Lisa from Do It For The Love.  She has been our contact from the beginning and set everything up for the event.  

Max was so excited to be there, and that was just heightened once he saw his friend Lily was there to meet Michael Franti with him!  Lily's whole family got tickets to enjoy the concert too.  When they went to the DIFTL booth and introduced Lily to Lisa, they made sure she got to be part of the excitement too.  She took us and the other family there on a wish grant back stage before the music started.  






Once we all picked our jaws up off the ground, we were taken back to the real backstage to meet the artists.  But first, we took a tour of the hallways with the posters of everyone who has performed at Red Rocks.  Truly, if you're the traveling to concert type, it is an incredible venue.  You can easily see why artists keep coming back!



I had to snap a picture of The Beatles at Red Rocks for Max.  
We got to enjoy a little practice session with Jacob of SOJA and Sonna (whose voice is incredible!).   It was a true treat and something we didn't expect to see! Max decided to sing along too!

After a round of applause for them, it was time to meet Michael Franti and his band Spearhead.  We told him Lily was the one who nominated Max.  Max gave Michael the song he wrote for him.  Max chose to make his own song, with the keyboard and singing and put it on a CD for Michael.  



When Michael received it, Max reached out to hold his arm.  Max will do this as a way to tell you he really likes you.  We see him do it with therapists and teachers, but this is the first time I've seen him do it with someone he's just met.  I think he must feel like he already knows Michael Franti, since he sings along with him about every day. 



He showed him his cool Colorado cap.   And they talked about things rockstars talk about. 




We got a group picture, and then met the rest of the band.  


This is J Bowman the guitarist.  He thought it was pretty rad that Max plays guitar with his feet. 


And this is the bassist, Carl Young.  



As we were wrapping up the meet and greet, the girls had to take a couple selfies.



It was time for the shows to start, so we thanked them all for having us and for meeting with Max before heading back out to the stage.  






We got to our seats at the side of backstage to watch for the next almost four hours!!  Lily held Max's hand a lot of the show.  And helped him dance, along with Abbey.  


After he finished his set, Brett Dennen came over for a little meet and greet with Max and the girls too. 


The sun started to set behind the rocks and the stage lights and smoke machines kicked up.  It was a lot of activity behind the stage, but we got to see a totally different side of the show! And it wasn't too loud for Max.  



He eventually started to get hot and needed out of his chair.  So we did what we do and lay him out across all of us.  He snoozed for a bit of SOJA's set...which was maybe the most exciting and loud set. It is funny how he can just shut down when everything around him is so wild. 


He slept a bit longer in between bands playing, so Lily kept him company by holding his hand some more.  

Max woke up just in time to see Michael Franti go on stage.  We got to meet Sara, the co-founder of Do It For The Love.  She stopped by to make sure we were having a great time. 

Michael Franti put on a really fun show.  He spent a good portion of it up in the stands, so we didn't see as much of that.  But the parts he was on the stage were really exciting!



Max got to hear his favorite song of Michael Franti's.  The Sound Of Sunshine is the song he likes to play in music therapy with Ms. Laura.  

video

Towards the end, we knew they were going to have the kids go on stage, but they were all falling asleep.  It was nearly midnight!  As much as our little rock star wanted to keep on keepin' on, we needed to get him home and in bed and his medicine in him.  

We waved good-bye and gave our thank-yous again and headed for the shuttle to Max's van.  When we reached the shuttle, all the kids were on the stage for the last song.  Just missed it, but we still have so many awesome memories from the night.  Every musician and member of Do It For The Love showed nothing but genuine care and love to Max.  It was an incredible experience.  One that none of us will forget!  When will we ever watch a major concert backstage again?!  

Thank you Do It For The Love for the amazing night.  If you know someone who would like to have a wish granted to go to see their favorite musician in concert, check them out.  They are a wonderful organization.  

Thank you to Michael Franti and Spearhead.  And to the rest of the bands and musicians who made it a night to remember!  Trevor Hall, SOJA, Sonna Rele, Brett Dennen, and Nakho and Medicine for The People all helped to make it a very special night for our whole family!  I think our kids are going to be spoiled thinking this is what a concert event is like!!  But, what a grand way to attend your first big concert!