The iPads are here!

If you didn't already know the iPads are here! The kids are so excited and I couldn't be more proud of Greysen for wanting to help others even in the midst of his own struggle. He is going to be making some more videos to let the kids know (thru their parents) that they will be recieving an iPad. As of right now we have raised enough to give away 8! I can't wait for the kids to get them in the mail! Here is the video link. They are just too cute for words;) 

http://youtu.be/8ZuEGYf9foE

The best way to help yourself...

....is to help others. Am I right? I don't know about you but anytime I have had a pity party for myself or my son it has never made me feel better. The times that I feel we can conquer this disease and get through the days are when we are focusing on helping others.... and that's exactly what we have been doing. I'd be lying if I said that this disease hasn't gotten me down the last few months. It has. But more so it's had Greysen in tears more days than I can count. It's getting to him. The daily irrigation's, the emotional toil of being so young yet being so brave. He endures a lot and we have tried very hard to not make him feel entitled. Yet at some point we have to confront the issue with him that YES this sucks and YES its unfair but lets make the most out of it. Feeling sorry for ourselves gets us nowhere, and in a sense lets this disease win. Its taken a lot from him but I won't let it take the things that are in our control!

So..... what have we been doing? For starters, Greysen and I decided that we wanted to raise some money to buy iPads for kids like him. When you have to do daily enemas you NEED a distraction. It takes 1-2 hours and (if it were me and I'm SO glad it isn't)  I definitely would need a distraction when that tube is going you know where. We set up a fundraiser to raise $1500 and within 6 hours we reached our goal! 6 HOURS! The support that Greysen felt, and his excitement, was unbelievable. People continued to give so generously that we made it past our goal! So far we have been able to buy 9 iPads! Greysen is so excited for the iPads to arrive in the mail. Each ipad already has a designated home so we will be sending them to their lucky recipients soon. The kids receiving them are all part of a support group that I started on facebook which leads me to my next project....

After being a part of several facebook support groups I decided that we needed one specifically for parents of older kids with HD. All of the groups are so helpful and beneficial but specifically I wanted one where people could come ask questions geared toward our older children. Having a baby with Hirschsprungs is so much different than having a school aged child with it! So now the group is up to about 140 people from all over the world. This group (along with the others) are my HD family. When I'm secretly crying or struggling with something I can go on there and know they will understand, love, and support me. They are such a blessing!

I only know of 2 other people in Montana with Hirschsprungs disease. One is a 14 year old and the other is my dear friend Mandy's son, Samuel (10-ish months?). After starting the facebook group I realized that if Greysen could connect with other kids his age just like him, then maybe he would feel the same support like I do from the HD moms! So I started a program called "HD Buddies". It's a pen pal program where people can email me their information and then get matched with a child of similar age, gender, etc. They are then able to connect on a more personal level and can get letters and photos the old fashioned way;) I've had so much response! Even parents of babies are participating. I hope this program forms support and friendships that will last a lifetime:)

So there you have it! Fighting an unseen battle can be so draining but what we learn from it can be used to help others! Treat others with patience and dignity because you never know what they are going through. And most of all don't feel sorry for yourself! There is always someone who has it way worse than you:)

Here is a video of Greysen explaining "Wishy Washy Time" in his own words and then asking people to donate money for the iPads:) Ignore his half cut-off head...its my first Imovie and I couldn't figure out how to fix it haha......I am so proud of this boy!

Greysen's Wishy Washy Video!