GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing everyone else’s journey, and having this connection. Here is our story!
Before Levi was born, I had a nervous feeling; anxiety that something was “off” but at each ultrasound things looked great and he was born a healthy baby in June of 2011. Continue reading
My daughter Holly (9) & son Isaac (4) have recently been diagnosed with Guanidinoacetate Methyltransferase Deficiency (GAMT). What a label, hey? Certainly sounds more impressive than Global Developmental Delay, Autism, or just plain old Epilepsy that we were ‘gifted’ with before. Continue reading
My husband likes tattoos. Really likes them. I do not have one spot of ink on my body. An indecisive person like myself is not a good candidate for tattoos. It’s a struggle for me to decide on where to eat out, so choosing an everlasting piece of art to adorn my body is not a good idea. My husband loves the process of creating the designs with the help of his talented “tattoo guy,” as I call him. My husband takes bits from his daily life—lessons, reminders, badges of hard won physical and emotional battles, and likes to have them as permanent art on his body. He’s thoughtful about what he wants to say and I love the ink masterpieces that unfold. It’s hard to choose my favorite design, but one that resonates is “The Three P’s.” Peace. Patience. Perspective. Continue reading
My name is Levi. I am 5 years old and ALL boy. I love everything life has to offer me. I am an easy going, BUSY, happy, funny, & smart kid. Continue reading
I broke my arm about two months ago. I’m 41 and I tried to ride a skateboard. It didn’t work out. It seemed like a much better idea in my head. While I counted myself very lucky—no surgery, no cast, no major damage to joints or ligaments—the broken humerus left me in an immobilizer for six weeks. Six weeks of one-armed activity. One-armed getting dressed, one-armed doing my hair (which proved to be the most difficult, if not impossible, activity), one-armed cooking, one-armed mothering. I wasn’t even able to drive for the first week of my injury. In my house, I need all hands—and arms—on deck to make things run. Continue reading
I’m grateful for so many little miracles in my life. Every time I watch Max play soccer or hear him bounce the basketball, I am grateful. There was a time, not long ago, that I thought that Max would be very, very different from kids his age. Even today, I have a fear that something will change and his condition will worsen. Continue reading
I woke up this morning with anxiety. We needed to change my daughter’s g-tube today. Through the course of treatment for GAMT, it became clear that she needed it for several reasons—medication administration, additional nutrition. She may not always need to use it as she gets older, but it was the best decision for us at the time. Because the g-tube can physically deteriorate, it is necessary to change it every few months. I do this for her at home. It’s not a great experience for either of us. Despite changing it every few months for the past five years, the idea of it still derails her. Continue reading
I recently came across an organization that, when I took a look at their mission and what they based their mission on, really resonated with me. They are called Suffer Better (sufferbetter.org), and their tagline is “give your all, and give back.” It reaches out to endurance athletes who take on grueling training and events, and who also have a charitable side. I myself have been testing my own resolve for years in endurance events. But after reading about Suffer Better, I started to think deeply about what makes me keep going when it hurts. The folks at Suffer Better ask followers to send them personal notes, and I decided to take the time to put down some of my thoughts. Below is what I chose to share: Continue reading
Meet Max. Six years ago (almost seven), my life changed when he was born. He was my first child and the most amazing gift to me and my husband. When I was pregnant, everything seemed pretty normal. Clinically, the only thing that was wrong with my pregnancy was I had a single umbilical artery. It was not a major issue, except I had to have a few extra ultrasounds to ensure that the baby was developing and growing normally. In retrospect, I wonder if this was a symptom of the diagnosis we would receive a year and a half later.
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I feel like my previous entries have been thoughtful and reflective, and admittedly, very therapeutic for me. This one is a little rough around the edges. It’s more of a rant. A bratty, selfish tirade. I hate the medication part of GAMT.
