When a Child’s Serious Illness Changes Everything


 

The Celebrating Moms and Their Choices Series

Brothers Together in HospitalIn the flash of an eye everything we ever believed about being a Mom and work-life balance can be tested in a crucible of life’s most challenging reality. For me that moment started in July 2014 when our younger son nervously confided he had been having terrible symptoms — that led to the most difficult medical journey our family ever imagined. When I wrote my original Celebrating Moms and Their Choices story two years ago, I never could have envisioned what was to come. This update is to share this new chapter, and the re-launching of our Gooseling Parenting blog. The blog will continue to feature parenting tips and experiences for all families, as well as those with children with special needs, chronic diseases, or serious illnesses.

As much as I have always loved my career, my children come first. With our Gooseling start up so important to my sister and me, my son’s medical crisis was the ultimate test. An endless spiral of being in and out of the hospital started with his diagnosis of Inflammatory Bowel Disease (IBD) in August 2014. My best laid plans to keep up the work flow fluttered in the wind of our new reality. The constant, crucial life-changing decisions and learning about an endless array of medical issues and conditions. Never mind sleeping in my son’s hospital room on a euphemistically dubbed “sofa” (more literally a plastic futon that does not fold out), including the almost eight months he was in two hospitals in 2015. So I was trying to think logically and be there for my loved ones, on little sleep and as much caffeine fuel as I could get. I am beyond words lucky that my business partner is my sister and best friend, an infinitely devoted mother and aunt.

Fighting for my son’s life was my every breathing moment and how every decision we made would effect him that day, month, and for the long term. Every dream I had for my career while still in my heart was on hold for the fight of my life to make him well again. For a long time I thought the key was finding the right magical medication or combination that would “fix” everything. That we would walk out of the hospital into the sunset, back into our normal lives. As he failed to respond to each medication, each and every time, while developing one “unusual” issue or complication after another, my dream evolved into a pragmatic, painful acceptance that difficult chronic illnesses are a long journey. Reality was the slow, gradual process of healing, once we finally found the right combination of medications and therapies that turned the villainous disease around, starting the process of remission.

Reality part two: once a patient has been through such a long, serious illness and lengthy hospitalizations, that recovery includes dealing with medical complications systematic weakness, and emotional implications. Magic rainbows are in short supply. Hope, determination, resilience, and positive energy are the crucial keys.

Where do you find the inner strength to cope with the endurance test of your life? When you literally have to put on hold most every part of regular life outside of your child’s hospital room? Today’s outlook and decisions for your child and their impact on his future is your world and obsession. Except for those many interspersed moments in the day when you can’t help but think about the world outside this hospital room, that is waiting for you to come back. Your business, your friends and family. Even as simple as the sun or snow peering into that hospital window as each season melts into the next, while the days of the calendar click by.

We are very lucky in the long run. We have been surrounded and supported by spectacular, nurturing family and friends and a stellar, caring medical team. Most importantly, our son is gradually recovering. Each day is a new opportunity, a fresh start. Healing inside and out for him and all who love him takes time.

No one wants their child to go through an experience like this. But we hope that sharing some of the lessons we learned as a family will help others who are also struggling with their child’s chronic disease or serious illness.

During my son’s illness, my amazing sister Vicky Keston completely redesigned and re-programmed the Cavity Dragons game apps in Unity, providing an utterly entertaining, richer gaming and story experience for children. We hope the new versions will entrance and excite your children to happily brush their teeth, solving the eternal parenting struggle to get kids to brush. If you already own the Cavity Dragons apps, simply make sure you have updated them to the new version and let us know what you think.

We are grateful for your support for Gooseling as we continue our pledge to provide the very best video game apps to teach children social and life skills. We hope you enjoy the parenting blog and the Cavity Dragons games.

 

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