HME Gathering in Kansas

We just got back from Kansas for a Hemimegalencephaly Gathering at an amazing property owned by Saasha Huston's parents, Raintree Montessori School. We had such a great time. It took us 16 hours to get there and it seemed like 50 getting back. On the way there we stayed in the Radisson Hotel in Thornton, CO...it was a castle and the kids loved it, although the time spent there was minimal as we got there late and had to leave early, but the sleep was great and the breakfast was tasty.

We got to Lawrence, KS, Thursday night after an unbelievable lighting show, wind and rain. We couldn't drive all the way to Kansas without getting in some sort of a storm right? :) Friday around 4 p.m. the families that had arrived met down in the lobby to meet and chat. Saasha prepared these cute bags with all sorts of goodies and souvenirs from Kansas for us. I think we were only supposed hang out in the lobby for an hour or so, but some of us ended up staying there until 7:30 when Jen and Sunshine showed up and then we all went to dinner.


Saturday morning we went to the Raintree Montessori School for the day. There were gardens and playgrounds and swimming pools, a fishing pond, classrooms, playrooms, you name it and they had it. All the kids had such a great time running around. They had a news crew there doing an article on our little get together and the condition our kids share. Here is the article and little video clip. Here is the link if you get a chance to look at it. http://www2.ljworld.com/news/2008/jun/29/families_celebrate_support_survival/

So Saturday after the news crew left we ended up playing with the kids and talking with the parents. We had a catered lunch which was so tasty! After lunch we went to a room with just the parents while many volunteers (THANK YOU!) watched our kids so we could discuss important issues. The age ranges of kids here at the gathering was 1 year old to 20 years(I believe). We learned so much from all the parents, whether they had younger kids and especially the ones with the older children who have paved the path for us. I guess Nate and I didn't realize all that is entailed in the school system and the education process with a disabled child. It is really complicated and I'm actually scared that I will fail Tyson. We really want to provide the best for Tyson and there is a lot to know, but I'm so glad we know these families now who are going through or have gone through what we will in the future. We also talked about therapies which I realized Tyson needs a lot more than what he is getting right now. I have some serious research and phone calls to make to try to get more outpatient therapies going because that is what is going to make the biggest difference.

After our little meeting we all went swimming. The kids had a great time. This was Tyson's very first time swimming. He loves the bath, so I knew he would love the pool, and he did. It was a little cold at first but he loved it after. Every time I had to go help Karston or Brylee, Nicholas (who turned 11 on Saturday) had to tell me he would watch Tyson. It was so cute. I look at Nicholas and see a lot in him that I do in Tyson, and if Tyson turns out like Nick, we will be SO proud. He is ALWAYS happy, smiling and especially laughing. Nick always asked me in the morning where "the baby" slept. :) Here is a picture of Nicholas and Tyson in the pool.

After we swam we ended up chatting some more and then had another fabulous catered dinner. It was such a great day. On Sunday around 11 we met at the school again for some lunch and then a great storyteller woman came to entertain us all. The kids loved listening to all the stories and songs. Karston was even trying to recite the "ghost in the basement" story that night before going to bed. It was hilarious. Before leaving we took many pictures and said our goodbyes. It was so sad to say goodbye to everyone, but also great knowing what a great support system we have behind us. I now know who I am talking to on the Yahoo Group. :) Thank you Saasha and Dan for an amazing weekend! We look forward to seeing everyone again hopefully next year.

Here are a bunch of pictures from the weekend.

Nicholas and his mom Kelli

All the HME kids and mom's, we are missing Trisha and Devin.


All the families.

The Mom's.

The Dad's

Noah and his mom Jen


Nate and Karston fishing.

Gibson and Tyson...what a poser :)

Tyson giving Nicholas "five".

Avery and her mom Holly. I love this picture!

I love this picture as well. Some sad kids!

Jayna and her mom Sunshine

Tys Tys, happy little man.

This is Ben who is 2-1/2, walking and talking. What a smartie pants!

This is Laura and her gameboy which she loves!

Shelia and Tyson, who was his second mom while we were there. :)

This is Sachit. He loves watching his game shows, I don't blame him, I love game shows too!

This is Brylee, Luke, Caiden and Nathan (siblings of HME kids). They had a great time playing together.