Catching Up

Wow 2 weeks since my last post, can you tell things have been busy??  We had such a nice time with my mom here and were so sad when she had to go back home.
Chatting with "a-ah"(grandma), they are so close and he loved spending time with her.  

  

An exhausted boy who was determined to show grandma how he plays the piano.  He loved showing off for her. 

 Just hanging out with grandma.

 Silliness this past week.

 On Tuesday afternoon Junior was so excited to have his friend stop by for a visit.  These two are the same age to the day and have been friends since they were little. 

  

Junior was super excited to let Michelle try out his Eagle Eyes system.  She did so good and is now getting a system of her own. 

 
Some selfie silliness with Junior.  Short arms equal impossible to get a good pic but thats okay we were having a good laugh over it before getting back to reading time.  We are currently reading the Narnia books and Junior is really enjoying it.

 Today we were up early and ready to head out the door for an appointment when we got a call because they needed to reschedule.  Since we were already ready to go we decided to go do something fun and instead of the doctor we went to the aerospace museum.
We all had a great time and Junior loves all the planes and space stuff.  Here are a couple pics from our day and tomorrow I will do an actual post about our outing.

Joni and Friends Family Retreat - part 3

Friday is always a hard day because it is time to say our goodbyes and head for home.  Junior was loving seeing all his buddies and hanging out with everyone before it was time to leave.

We were all looking a little worn out by Friday.

Junior loves the music but it is too loud for him in the worship center.  No problem he gets his own music group outside.

Looks like a serious conversation going on here

 These two quickly became friends

 Abby getting a pic with Joni before she left. 

 Junior and his friend showing off their special buddies.  Junior's with the same tubes he has and his friends has an AFO(ankle brace) just like she does. 

 A final visit with Rozz was a must, Junior was just sure Rozz needed to come home with him.

 One of Junior's best camp buds Matthew.

   

Camp friends are the best.

 

I finally got a few pics from my mom's camera so here are a few more.

 This was actually as we were leaving for camp on Monday.  Junior wasn't about to smile since we had stopped for a pic instead of heading straight for the car.

Joni and Friends Family Retreat - part 2

On Wednesday Junior had not slept well and was quite tired.  It worked out best for him to stay in the room for a few extra hours of sleep in the morning and then start activities at lunch time.  One of the great things about camp is how relaxed it is, no one is bothered when we need to do things on our own schedule.  The weather was also playing a part in his tiredness and low energy(he was having a ball but we didn't see as many huge smiles as usual), it was much colder then usual as well as windy. 

A little rest made for a much happier kid, ready for some fun.  Loved the upper corner pic with his tubie monkeys head peaking out from the covers.  Also the picture next to it, he had decided he needed both a show and music. 

 Lunch time, this was the women's pampering day so he had lunch with Abby while mom and I had lunch, a massage, haircut, etc.
Abby said he got super excited when he saw the watermelon(he recently discovered he loves watermelon).  Of course he needed a taste so she got him a little piece and brought him over to where the ladies were having lunch so I could give him a taste of it.  He only gets a tiny taste of things but I love seeing him get so excited and happy over that little taste.

Abby and Junior decided that some time at the pool would be fun.  It wasn't as windy there so it was a great plan.  It is quite a walk to get there though and there are some hills so thank you to the "team" that took turns pushing his chair to help get Junior to the pool.  He clearly had fun. 

 Wednesday evening we had a lovely dinner and it was great to visit and reconnect with a wonderful group of ladies.

We made it an early night since a certain little boy was in need of sleep.  No complaints though because we were all wiped out.

Thursday was crazy hair day, the carnival, and talent show.

Junior was super nervous about the talent show and I wasn't sure he was going to end up going on stage.  He was in tears at one point and so we sat and discussed what it was all about.  I reminded him that we had brought video of him playing the piano so he was just going on stage to be sure Abby said what she was supposed to, he did not have to actually play in front of all the people.  He then decided he could do it, I knew he wanted to and it was just nervousness or I would not have pushed him.  He did great, he stayed calm and only had a few tears when all the clapping startled him.  They were great about letting him do his talent in the very first part of the show so he could then watch the rest from outside where it wasn't so loud.  He has been really struggling with sensory overload lately(prior to camp) and this is something we see when he has a large jump forward cognitively.
He may have been stressed about the show but later he was soooo proud of himself for going through with it.

On stage during the talent show, so proud of my boy for working through his nervousness and wanting to go ahead with the talent show.

Tomorrow I will get pics up from Friday, lol there are lots of them.
A few random camp thoughts on how our camp week went.
This year Junior had a ball and was loved like every other year.  He also started out the week tired, he had, had a busy few weeks prior to camp and we had not had a chance for him to get some real rest and prepare for the week.  We had to do things a bit differently and allow him more time in the room during the day and not push him to do as much.  I knew pushing him to do more would have been disastrous and turned his camp experience from lots of fun to him just putting up with it.  I was reminded by his smiles and joy that he was just happy to be there, he didn't have to do every single thing to get the most out of it.  Unlike so many of us he doesn't care about all the "stuff" or "activities", being surrounded by love and acceptance are what makes him happy.  He truly finds "Joy in the Journey" even when his "journey" may look a bit different.  He didn't "miss out" this week he just had his own way of embracing it all and while doing it reminded me how much joy there is to be found, you just may need to adjust your perception about how to find it.
As I have said before camp was amazing and we are so thankful for all those involved in making it such a special place.  Junior had a fabulous week and so did we. 

Joni and Friends Family Retreat 2016 - part 1

Yesterday afternoon we arrived home from another amazing week at Joni and Friends Family Retreat.  This was our sixth year and though it is not easy to get there it is always soooo worth the effort. This year had a couple different very special things.  The first was that my mom went along with us and the second was that Joni Eareckson Tada was in attendance.  For my friends who may not know who Joni is you can visit www.joniandfriends.org for more information.

Junior loved having "a-ah"(grandma) along to share our adventures at camp and was so excited to have her meet all his buddies and see why we love camp so much.
You can tell someone how amazing camp is and that it is a little piece of heaven on earth but until they actually experience it they just don't "get" the magnitude of what that means.
In a world that is constantly pointing out whats "different" about Junior, asking whats wrong with him, or ignoring him he gets to experience a week of total love and acceptance.  Watching him with his buddies and seeing others interact with him as an equal is wonderful.  Realizing, for a week, instead of being avoided my child is popular brings tears to my eyes and puts a smile on my face.

Now for pictures from our week, starting with Monday(picture overload for sure).  (I realized my mom has more pics on her camera which I don't have yet so I will update with those once I get them).
Arriving at camp(this weeks theme was Joy). 

Relaxing and then having dinner

Opening ceremonies

Ice cream social, yummy.  As you can tell Junior was tired out by this time.

Tuesday pictures

Junior in the teen group with Abby. 

Then it was camp picture time and Kara brought a banana slug to Junior.  Kissing the banana slug(or pretending to) is a camp tradition.  Junior was not at all impressed and wasn't about to smile with that thing in his face.    

  

We were so excited to meet Joni and her husband Ken.  We have wanted to meet Joni for years and in fact my mom read Joni's book when I was a baby so we knew all about her long before we joined the special needs world.  We all have "heroes" and people in our life that inspire us to do more with this life God has given us.  Joni has always been one of those people, but I was nervous about how I would feel after meeting her in person.  I love her books, radio shows, etc but often when we actually come face to face with those we consider our "heroes" they are not who we have been led to think they are.  I was overjoyed to walk away from this meeting feeling blessed and that they indeed are just what we see in the media.  They treated everyone with love and respect and took the time to visit and ask questions instead of just the quick "photo op" I had expected.  

Square Dance time.  There is nothing quite like a JAF square dance.  So much joy.
Junior had been napping before for the dance so looks half asleep in that first pic.  

 Even with a nap Junior was very tired and I didn't think we would make through more then a few minutes of the square dance.  A visit with Rozz changed everything though and he was able to relax and enjoy the dance.

 

 

 A few videos of the square dancing fun.

 Totally exhausted after the dance. 

Still lots more pics to go so I will work on another post tomorrow.

Grandma is Here

Grandma arrived yesterday and it is so nice to see her.  Junior was so excited he couldn't sleep much the night before she arrived so by the time she got here he could barely stay awake.
Abby stayed with him while I picked her up from the airport.  Clearly they were having a great time while waiting since I received this pic by text while at the airport.

Happy kids to finally have grandma here.

Junior was super excited to go for a walk with grandma this morning.

 Today we have been busy getting all the last minute packing done for camp.  Of course pausing for a little dancing is essential.

Please pray that Junior will have a wonderful time at camp and will stay healthy and comfortable.