Creatine Community Blog

25Nov 2016

max-soccer

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

23Nov 2016

Six Boys Halloween

Thanksgiving is upon us friends, and let me personally wish each and every reader a Happy Thanksgiving! (Those of you not in the United States, feel free to scarf down some turkey and pie, just for the fun of it!) The post this week will be what I am thankful for, or at least a few of the things, because my blessings are honestly far more than I can fit here, nor would you want to read such an exhaustive list. Continue reading

21Nov 2016

Trenton Smiling

I would have never guessed in a million years that I would have a child who has CTD. I mean, who has even ever heard of it? I sure hadn’t. Not until the day we finally got in to see a geneticist. I still was skeptical. All these tests they were running, all the time you hear that it is a less than one percent chance that your child will have this or that, it would never happen to me right? Continue reading

11Nov 2016

Beth's Kids

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

22Oct 2016

spiro-jammies

Sometimes, as a parent you get sucked into the daily grind of routines and chaos. It’s life with kids. And this life and its fast-paced schedule zooms us ahead, one season quickly following the one before. It will always seem this way. I often hear the phrase, “I can’t believe it’s_______!” Insert whatever seasonal descriptive in the blank, and that is the common underlying tone of the world in which we live. Always rushing and looking ahead. I catch myself doing the same thing. But as a parent of 3 kiddos, and one with special needs, I’ve slowly realized the disservice I am doing when all I do is look ahead. Continue reading

16Oct 2016

brothers1

Greetings again friends! I hope this post finds everyone well as we move headlong into the fall season. Last month I had the opportunity to celebrate Elijah’s ninth birthday. Such an awesome day had me reflecting how much this one little boy had been through in his short nine years on this crazy planet. Upon all this reflection I naturally started to think about our little guys Simon and Ezra, who will undoubtedly share the path that their big brother continues to blaze. Continue reading

30Sep 2016

beth-beach

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

20Sep 2016

at-the-park-with-daddy

My son William (5), has CTD, and started big school for the first time this year. William has always been very passive, largely due to his temperament but also his lack of physical mobility (walking etc.) and significant expressive communication delays. Our main concern was that he would get overwhelmed and lost in a large class at a mainstream school due to his developmental delays but he had demonstrated such an enthusiasm for learning during the previous year (since he started walking) that he wouldn’t be challenged enough at a Special School. Continue reading

 

Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.