Wednesday, May 29, 2013

Mighty Mathis update


Mathis passed away yesterday morning peacefully, surrounded by his family. He was 8 months old and touched so many lives - he'll continue to touch lives forever too. What a giant.

It's been hitting harder and harder just what a privilege it was to meet and hold him. The impact continues to grow.

Check out his facebook page here - share your own Hope List and change your profile pic to the above image to show support.

Read his blog and see his adventures here.

Sunday, May 26, 2013

Mighty Mathis

Yesterday was a really special day for us. It's one that although had Autumn screaming in the car for an hour will always be looked back on with extreme fondness. It was the kind of day you treasure.

We drove down to Saratoga Springs as soon as we were up and ready to leave. We spent the morning with Stuart's family, went on a walk, played outside, and enjoyed being out for the day. In the afternoon we headed up to the Mount Timpanogos Temple to meet my friend Jackie and her family.

Jackie is an online friend that I've always felt a bond with. She's sisterly, and that's something I really value in a friend. She has 3 gorgeous sons that have such strong characters that you'd want to steal them all. Amazing dark curly hair, long eyelashes, dimples, the cheekiest smiles!

Whenever we meet anyone from online (this is showing how awkward I really am. I do know people in real life too!) I always get anxious to the point of having mild panic attacks - what if I'm not the same in real life? what if this ruins everything? what if Stuart makes this really weird? haha! He worries about that too.

Luckily Jackie and Dujuan are more normal than us - so friendly, chatty, good huggers, laugh easily. I love them.

Their youngest son, Mathis is 8 months old. At 6 months he was diagnosed with Spinal Muscual Atrophy - Type I. With a life expectancy of 2 years Jackie and Dujuan are traveling and fulfilling a Hope List with him and his brothers. You can follow along with their Hope List progress and get updates on Mathis through their blog and facebook page.

My experience holding Mathis and looking into his sweet little face is something I'll never forget. I expected to see him and be changed. I actually expected to see him and not be able to keep myself together at all. I held it together though, and I wasn't changed in the way I expected.

I had prepared myself to feel things like, "We have to live our lives more fully. We have to be nicer to each other. We have to be more patient. We have to cherish life and one another, and our talents, our time, all our relationships etc..." I was prepared to feel depressed, I guess. I expected to feel like I had to do more but instead I came away hopeful. Holding him actually healed my heart. I felt relieved knowing that we are living our lives fully. We are nice to each other. We're happy! We're not where we expected to be, or wanted to be at this point but we're happy. We spend the time we have together. We say and show "I love you" every day. Patience, for now is not something we struggle with. We're living life, just the way it's meant to be. Feeling that means more than the other side of the coin I was expecting.

Yesterday was really special.