CCDS Family Stories

05Nov 2022

“Awareness” – Lacy

I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob has Creatine Transporter Deficiency. It is a diagnosis we never thought we would get mainly because we had never even heard of it. Continue reading

23Nov 2021

“Our Life with Epilepsy” – Nathan

Hello again, CCDS family, sorry it has been a while since I have contributed to the blog, but I am thankful to have the chance to be talking to you again. As this is Epilepsy Awareness Month, I wanted to share some of my thoughts, feeling, and, most importantly, the lessons I am learning along the way. I tried to keep this blog post short but that didn’t work. I also tried to keep it honest, so I did not hold back. Continue reading

05Oct 2021

“Bye, mom” – Nancy

“Bye mom!” These were words I had longed to hear for nearly two years. Our youngest son, Sam, graduated high school in June of 2019. In October of 2019, we sold our home of 20 years in the suburbs and bought a 9-acre farm in the country. It was another step toward providing our nonprofit, Good Works Farm, a space to provide farm-based programming for individuals with special needs, like Sam. Continue reading

21Sep 2021

“Rare Diseases” – Lacy

Being a parent of a child with a rare disease has its unique challenges. There are so many questions that you ask yourself on a daily basis.

Why does my child have this condition?
Why is he not developing like other kids?
Why are there no treatments available?
Why can’t I do more to help him?

These questions change all the time, but the really frustrating part is that the answers do as well. Continue reading

09Jul 2021

“The Carousel” – Nancy

The bell rang, the music started, and we began moving slowly. The expression on his face changed almost immediately, and in that moment, I knew I had made a huge mistake. His horse’s face was frozen in a contorted expression of distress that matched the rider. I hopped off my horse and attempted to calm him, but as he went up and down and round and round faster, his fear only grew. He clung to me with a death grip. I managed to peel the man-child off his horse when at its lowest and sit him in the seat behind him. By then, the operator, realizing there was a problem, had brought the ride to a stop and was standing at the top of the stairs. When he saw that Sam was safely planted on the bench, he gave me a thumbs-up and started the ride again. I climbed on the nearest horse and continued to reassure him from a distance. Continue reading

18May 2021

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“My Worst Fears” – Chelsi

Do you ever feel like all the work we do for our kiddos is not enough? How about feeling lost and deep deep pain when you see your child struggle every day? Lately, this is what has been running through my head. My family and I work so hard to help Caiden be successful with everyday life. Sometimes I feel deep down that it is still not enough. From the time we wake up to the time we go to bed I wonder if he will be okay without me by his side all the time. I feel so much pain for him when he has behavior after behavior after behavior on a daily basis. Recently, he decided that he no longer wants to go to school. I now need help just to get him loaded into the car. To top it all off, every day, like clockwork, we receive texts, phone calls, and emails from his teacher and principal with behavior reports. Getting these is the worst feeling in the world. How do we know if what we are doing is hurting our children or helping them? Continue reading

30Apr 2021

“The Rare Sibling Experience: NORD Webinar” – Erin

The National Organization for Rare Disorders (NORD) recently hosted a webinar on the “Rare Sibling Experience.” As the mother of two children, one who is diagnosed with Creatine Transporter Deficiency (CTD) and one who is not, this resonated with me and I was very curious to hear from experts on the topic. Questions about how to handle the experience of my daughter as the sibling of a child with a rare disease often swirl around in my head. My son Cadman is 6-years-old and has CTD. My daughter Emma is 3. Because of their young ages, most of my concerns are about the future, how this will affect Emma as she grows up, and wanting to make sure that as their parents, we are communicating in a healthy, constructive way. The webinar covers communication tips for siblings of various ages (very different for a preschooler vs. a teenager!). Continue reading

01Mar 2021

“Coping With the Fear” – Nancy

I had just poured myself a cup of coffee and settled in for the 2-hour Ultragenyx Study, feeling I might have something to offer having been in the CTD world for 20 years, when the second question knocked the wind out of me: What is your greatest fear for the future? It happens every time that question is asked of me. It seems that the fear for the future is always lying just beneath the surface like an alligator waiting to strike. I immediately lost my ability to speak and raised my index finger, asking for a moment to gather myself. I’m surprised by my sudden and intense emotional response to that question, and I’m embarrassed. The ladies interviewing me are gracious and give me the time I need. I just met them, but I feel that maybe they have kids, too. Maybe they understand. I take a deep breath and attempt to convey how I feel, how I worry that my son will be mistreated, neglected, or abused without my vigilance.  I worry who is going to wipe his butt when he, a grown man, uses the bathroom. Or who is going to cut his food small enough so he doesn’t choke. Who is going to draw him away from his puzzles or iPad long enough to interact with real people from time to time? I worry he won’t understand where I went when I’m gone and that he’ll think I left him on purpose. I worry he won’t feel loved. Continue reading

20Jan 2021

“New Rules for our School” – Randi

We are very fortunate in our state to have scholarships for children who qualify for an IEP but don’t attend public schools. This helps with funds for a visiting Intervention Specialist (special ed teacher) as well as home-based therapies. Sonnet’s health crisis has resolved greatly since she was diagnosed and began treatment for GAMT. However, her neurologist and I vividly remember when she was dealing with fifty-plus seizures a day. It isn’t certain if a serious illness could cause another downward spiral, so our family has chosen to largely quarantine during flu season. This was extended and amplified during the pandemic. Continue reading

09Dec 2020

“Creating a Meaningful Life in the Midst of COVID” – Nancy

It’s 3 AM and I can’t sleep. Again.

I came across videos yesterday of Sam completing tasks for the learning program we were doing for a while (Relationship Development Intervention-RDI), and I was reminded, once again, how little we really engage with him now, how few activities he engages in. It bothers me. Continue reading