I’ve always envisioned Caleb’s Cooking Company as a community of parents and children sharing, growing and learning from one another. I know from my own personal experience from parenting two children with autoimmune illnesses, that without my network of other moms, I would have been lost. I learned as much, if not more from them, as I did the doctors.
With that said, I’d like to introduce Sheri Pilley. Sheri is mom to Matthew, who is 13 years old and was diagnosed with Crohn’s Disease in the summer of 2011, at 8 years old. Matthew is presently on Humira, the SCD Diet and doing well in remission 🙂
Finding your “New Village” After a Crohn’s Disease Diagnosis
Almost as important as finding your pediatric GI specialist…..is finding your new “village.”
Like most parents, when our son was diagnosed with Crohn’s disease, we struggled to understand the magnitude of living with a disease, for which there is no cure. Like others, we spent months researching on Google and quickly became traumatized by what lay ahead.
We faced the unknown as we prepped our son for scary procedures, and second-guessed every decision we had to make, without the luxury of time to make those important medical decisions. We didn’t know much about Crohn’s disease and we certainly didn’t know anyone else who had a child living with it. We were alone, learning a new language that was virtually foreign the month before.
We quickly learned that to get through it all, we had to find our “troops”. It was critical to find a new network of friends, a village of support, who could help us better understand this new language and support us when we needed people who could relate.
We set out early to find others in our shoes and establish some relationships who could help us navigate. Through good old-fashioned networking, reaching out to that friend of a friend of a friend who knew someone with a child who had Crohn’s, we eventually found five other families in our area and have created bonds that now run pretty deep.
Helpful Advice From Our New “Village”
These fellow villagers have helped us with everything you can imagine. Here is just a short list of some of the things for which we are grateful:
- Healthy eating grocery store tours
- Demonstrating the least painful subcutaneous injections we now have to administer to our son at home.
- Helping us through flares, symptoms and prep for surgeries
- Showing us how to save big bucks on medications, that nobody had ever bothered to mention
- Helping us write 504 plans for school
- Giving us suggestions for the best child psychologist in town
- Sharing a glass of wine and a good laugh as we swap details of bowel movements
- Receiving advice on the best public restrooms
- Getting great recipes for the best gluten-free, dairy-free, sugar-free cakes and cookies that can be passed off as “normal” to our kids
They are an email or text away when we need to know we are not alone; but most importantly, our children get together and then realize that they are not alone.
Leaning on our long-time friends and family throughout this journey is a given. These important people in our lives will be there for us during rough times and celebrate with us when our children are in remission. But unlike the families in our village living day-to-day with this disease, they truly cannot fully understand our new language.
So, for the sake of your sanity and for the emotional well-being of your child living with Crohn’s or Colitis, sign up for the support group, show up to a Crohn’s walk, send your child to CCFA’s Camp Oasis, call the friend of the friend who has a child with IBD, just do something to connect with others and you’ll be glad you did.