CCDS Family Stories

“Our Diagnosis Journey” – Shelly

Some background to our story; I work in a well-baby nursery and Neonatal intensive care unit,  and most of my friends do as well… My entire pregnancy was documented and witnessed by these people, and they were so excited to be among the first to meet my daughter. I had the perfect pregnancy.  Minimal nausea, no swelling, optimal weight gain, and no blood sugar or high blood pressure issues.  So when at 37 weeks my doctor announced I was oddly measuring 2 weeks behind it did take us all off guard.  We were given a diagnosis of “small for gestational age” then sent home on bed rest for a week until I was too be induced. Once the day finally arrived everyone on the floor was excited!  Every single one of the nurses had patiently waited  9 months to meet my little girl.

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“Expectations” – Nathan

Good day friends!  As I am traveling a bit with work right now, I have begun to think a few deep thoughts on what it is that I, as a dad, am striving for and what my goals are for my CTD boys.  Big questions I know, but the answers that I have come up with have really been a surprise, even to myself, and I hope that sharing my insights might help some others along the way. Continue reading

“Picturing the Future” – Beth

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

“Back to Blogging” – Janet

I love reading special needs blogs. They have lifted me up and carried me through some really tough years with my son. Ironically, it’s been awhile since I’ve written for this blog. I have tons of content up in my brain…. but last year I struggled to put those ideas into blog entries to help lift up all of you! Continue reading

“Because” – Amy

At the end of the year, I like to reflect back so I can look forward and plan for the new year. 2017 has been a challenging, yet rewarding year for our family. Like any other family, life moves at warp speed sometimes, but things tend to slow down near the holidays. While every day is an opportunity to reflect and be grateful, I still like to take the time to reflect on what life has offered us as the year comes to a close. Continue reading

“The Magic of Christmas” – Laura

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

“Got to Get You Into My Life” – Amy

After learning about our son’s Creatine Transporter Deficiency (CTD) this past January, we started down the path to begin supplementing with a set of amino acids. When you’re diagnosed with CTD and there is no treatment that reverses its symptoms, this is the most common treatment you can try, apart from therapies and other methods. Whether or not it makes any difference for a CTD child is inconsistent, and varies greatly depending on who you talk to and which scientific study you read. Regardless, for us, it was one of those things that we knew we’d rather try than miss out on a potential opportunity – and they have since become part of our everyday life. Continue reading

#SeasonofSmiles – Whitnie

As we approach the holiday season, it is customary to reflect and give thanks for the blessings we have. It’s also the season of giving and a time of year when many open their hearts and wallets to share in their blessings and give back to many meaningful charities. Continue reading

“#MyGivingStory” – Jerry

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

“A Boy and His Dog” – Laura

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