“Seasons” -Nathan

13Sep 2019

I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives from the National Organization for Rare Disorders (NORD), Michelle and Rose, they offered an opportunity to engage with staff from Congressman Markwayne Mullins office. Though the Congressman himself was unable to attend, the opportunity to take advantage of his staff member, Josh, being present was very productive in the effort to spread awareness of topics that impact the rare disease community. Continue reading

21Aug 2019

A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and take it as the compliment I think they intend it to be. I am not sure what they are seeing from their perspective. Are they seeing Jacob throwing himself to the ground in a temper tantrum? Are they seeing him frustrated when he can’t communicate his needs? Are they seeing me as a frustrated mom trying to do my best with the situation? Are they seeing him as a happy child? I see all of these things.  Continue reading

07Aug 2019

My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this location because not only could I participate in the Ironman event, but we were celebrating our 20th wedding anniversary and the venue did not disappoint! We won’t soon forget our time there. Continue reading

15Jul 2019

Hello again, friends! I know it has been a while since I have updated everyone on what’s going on in our daily lives. Well, I will be the first to say, things have been a bit hectic this summer, but the craziness is welcome and we love the way that our lives are evolving! Continue reading

10Jul 2019

The Association for Creatine Deficiencies is excited to partner with Coriell, a world leader in biobanking (the collection of biosamples for research purposes) to collect and store cells from patients with Cerebral Creatine Deficiency Syndromes. We need your help as a community to donate cell samples to enable research! Continue reading

07Jul 2019

I know I’m one of the lucky ones. We still have our son. There was a moment in time where I seriously considered giving up custody of my precious baby boy, my third child. Sam is 21. He has CTD and therefore, Autism, Epilepsy, Sensory Processing Disorder, food sensitivities, ah… you know the list. Continue reading

30Jun 2019

The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas about metabolic disorders. This year, the meeting included a satellite session on Cerebral Creatine Deficiency Syndromes, hosted by the Association for Creatine Deficiencies. Our ACD team was represented by the irrepressible dynamic duo Heidi Wallis and Laura Trutoiu. Continue reading

09May 2019

When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether they’ll have something that most of us take for granted. A friend. A real, honest-to-goodness friend. Someone they can relate to, who likes to be in their company, and who will be there for them in good times and bad. Continue reading

07Sep 2016

Family Picture

Well friends, the end of summer is again upon us.  Children are heading back to school and hopefully, soon the cool air of fall will again give us respite from the stifling summer heat. In our family, three of our boys are returning to their studies after a few short months of summer vacation. 

This return to school is an exciting time for us, as we welcome new experiences and try to begin the process of planning for the fall and winter to come.  Aside from school starting, we have had a few other things going on since I last posted.  The hub and mainstay of our family, I call her my wife, had to undergo a medical procedure that has pretty much removed her ability to lift or bend for the last four weeks and a few more to come.  At the same time, I have had the opportunity to participate in a full-time education program, which I have been putting off for several years.  Oh, and while all this was going on, we still have had the usual mix of staffing changes, appointments, and everyday fevers and illnesses.Waiting in Stroller

I bring all this up to say that our usually calm late summer and early fall season has turned into something more reflective of chaos than the Pumpkin Spice Latte filled serenity(ish) world we expected, and that is ok.  I think as an individual and as a family we are learning to accept that these seasons will come and go, especially if you read my post from a few months ago. Despite this idea of becoming more comfortable as time goes on, I still notice that I keep getting asked “how we do it” by just about everyone who has heard about our unique blessings. I still have not really responded with the answer that is in my heart as first and foremost I know that this question usually comes out of true compassion. If I were to give some interested new friend my honest response it would be, “how could we not do it?”.  If there was a way to avoid all the craziness I have not found it, nor have I really had the time or felt the desire to look.  

My family, just like yours I am sure, has seasons in it that vary as widely as the weather in (insert your area) does. Although we try to prepare for the seasons that we know are coming, to prevent panicking over the equivalent of a predictable snowfall in January, we realize that CTD has created unique aspects in our lives that require us to be ready to make the best out of an unexpected snowfall on the fourth of July as well! After all, I think that the best way to be prepared for the upcoming changes is to accept that those changes will happen, usually when we least expect them.

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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.