During the winter break, we undertook the daunting task of organizing digital photos from the past fifteen years. We take a lot of pictures, so we had over 17,000 images to move and file. As we cataloged the pictures, we reminisced about our first house, our childless days, our travels, our first pregnancy. Seeing those baby pictures of Benny and those early years brought back a flood of emotions. Continue reading
There was a time I wondered if we would ever experience “normal” holidays with our cute Levi. We would, of course, go through the motions of every holiday and give him those experiences, even if he did not understand or know what was going on. I am soooo glad we did because I am telling you… this is the year! Continue reading
This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the charities they love. Continue reading
Trevor and I both grew up with dogs as family pets. We knew we would one day get a family dog, too. We wanted to get one soon after marriage, but with crazy college life and living in a rental that did not allow pets, it was easy to put off. Continue reading
GAMT is really, really, rare. We all know that! I am sure quite a few of us have been told to buy a lottery ticket a time or two. We have! With the chances and diagnosed cases and all, but can lightning strike twice? We may be going for the lotto next! Continue reading
Today watching Levi peddle his bike as fast as his little legs would take him off the curb, as he demonstrated and showboated his new tricks on his bike, I couldn’t help but smile and celebrate with and for him. Prior to his diagnosis, there were so many “missed/delayed” milestones that it became frustrating at points for us as parents to wonder… sure every kid walks at different times, but our kid
doesn’t/hasn’t done (fill in many blanks here) yet. Continue reading
I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of our 3 children’s GAMT deficiency and all the disability that comes with it. Everyone knows it has consumed, shaped, and defined Holly & Isaac’s lives and our lives as parents. Continue reading
We recently returned from a very fun and needed vacation to Disneyland! It was magical with a 5 and 1 year old. We packed in all that we could and enjoyed every moment of it, but the day after we got home, I still managed hearing the question from Levi asking if we could make a new countdown chain and go back again soon. I will consider that a successful trip! Continue reading
It wasn’t until this school year, Benny’s 7th grade year, that we realized he didn’t have the phrase “I love you” on his communication device. Benny is totally nonverbal and relies on assistive technology to communicate. He does have one approximation of “yeah” in his verbal catalog, but other than that, he uses his voice primarily to indicate feelings only— he’ll screech loudly when he’s mad his TV time is over. Continue reading
Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day. Continue reading
