About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Saturday, July 1, 2017

Family, family and more family

Today Matt's oldest brother got married. It was such an intimate ceremony and reception. Usually weddings don't excited the kids, but this wedding had something they haven't seen in a while. This wedding had COUSINS! And aunts and uncles and family galore. 






 After the reception we were invited to his brother's place for fireworks and fun. We were all looking forward to the fireworks since we really can't do them in Arizona. It's one of the things we have missed the most. No one in Arizona knew what a parachute is. We couldn't believe it! How could you live a life without ever shooting off a parachute or watching them fall from the sky praying they don't get stuck in the trees?

Jayen, however, was not as excited as we thought he would be. Fireworks have always taken him a little to get used to but I was hopeful he would remember them and it wouldn't take long. Immediately after the first bang he wanted to run back inside. I was in my "mean mom" mode and wanted him to work through it. I knew he could and I didn't want him to miss out on this time. My new sister-in-laws dad, Pat, saw that Jayen was having a hard time. I think it bothered him that Jayen was upset. I couldn't believe the compassion this man had for my son he literally just met. Pat ran to his truck and pulled out one of his hard hats. He brought it over to Jayen and asked him if he wanted to wear it. I think their connection was instant. It took a lot of convincing to get Jayen to stay outside. We started by just sitting on a blanket further away from the crowd just talking about the fireworks and getting used to the sounds. A while later I had someone bring me a box of snaps. This immediately set him off again. Jayen wanted nothing to do with the box but we continued to work through it just sitting on the blanket with the box beside us unopened. After we were content with the box sitting there, I pushed further and we opened the box. Then we watched mom throw them. Then he held them in his hand. Then he threw one. Then he threw two. THEN HE ASKED FOR MORE!



When it got a little darker, the bigger kids were ready to get the bigger fireworks out. This once again caused some anxiety and we had to work through it. Mr Pat offered to let Jayen sit in his truck, wear his safety googles, and just kept trying to talk and help him. I truly was overwhelmed with his patience, understanding and compassion towards my son. Thank you from the bottom of my heart Pat!
Jayen's cousin, Huntley, was a little apprehensive of the fireworks as well so she joined us on the steps. Just like before we took it slow and worked in baby steps. I would hold his ears when he needed me to but tried to pull them away as often as I could. We worked up to me not holding them at all, to him counting down with the kids when they were lighting, to watching and letting dad light them, to actually enjoying the ones that went off in the distance.



At one point in time I felt like I was torturing my son by keeping him outside. I felt slightly judged by everyone for making him scream through it. But in the end he sat outside watching the fireworks and actually enjoying them. He even asked for my phone so he could take pictures of them. Life with Jayen often is challenging, sometimes downright sucks, but we will always keep trying. We will always keep pushing. Because the end result is always worth it!


Next year, he's catching a parachute like Brilyn!

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