In hindsight, I can see the stages we went through with Crohn’s and SCD. I’m sharing my stages with you to help you along your way. I’m gentle and non-judgemental towards your path because everyone’s journey with IBD, Autoimmune Disease or SCD will vary greatly. Let’s just support each other.
My Stage 1: Fear & Worry & Stress
At the start of Alex’s symptoms, we were really naive to what we were getting into. We had first thought it was just seasonal allergies. Wow, wrong there! I had no idea we were even considering a chronic disease until Alex kept getting sicker and sicker and skinner and paler. It was really just about a month of total fear, worry and stress watching our once perfectly healthy son in pain and what we now know was a flare. We moved his bed into our room so I could be with him in the middle of the night and so I could honestly just watch him breathe. I hadn’t worried about that since I was the new mom bringing him home from the hospital.
We were in a constant state of lack of sleep and utter fear. The hardest part of being a parent is watching a child go through something really tough and not being able to fix it for them.
He couldn’t keep food down, spent way too much time in the bathroom, was tired and weak and had awful stomach pain. We waited for results and waited to get into the right specialists. Then the specialists ordered more procedures and tests. A lot of waiting lead to his diagnosis of Crohns’s Disease.
My Stage 2: Shock & Sadness
Diagnosis: Crohn’s Disease. What the heck…my son has Crohn’s disease??? I thought I had done everything as close to ‘right’ as I could from a health perspective….breastfed him, made him homemade, organic baby food, etc. He ate really healthy for breakfast and dinner…lunch was a little more processed and socially convenient. How did this happen to him? We don’t have any relatives with documented IBD. I went over these questions and many more again and again. I’ve even found some theories that my brain has possibly settled upon (Strep Throat – see my separate post on this).
The sadness started to sink in that my child would have to learn to live with this for his whole life because it has no cure yet. The sadness that he has to carry this burden and that he has to see doctors and specialists and get poked and prodded and scoped more than any normal child. I just wanted him to be a ‘regular’ kid. I wasn’t asking God for kids that got full rides to Ivy League colleges or get drafted by the NBA, I just wanted healthy, happy, good kids.
And if you are still at the googling phase – you’ll still be in the FEAR phase, reading awful stories of surgeries, death and near death experiences from IBD. I can’t tell you to stop googling but you’ll come to a point soon where you’ll have to ban yourself.
At some point we had to turn these voices off. This quote got me through:
You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding. – Cheryl Strayed
My son needed help answering the ‘Why?’ too. I think we kept pointing out that every single person has a cross to bear. You might not see it or know it, but we all struggle with something. You cannot compare struggles. This is his cross. And because I’m his mother, it’s mine too.
My Stage 3: Questioning & Learning
I think most of us agree that talking with friends about tough things or new things really help you through life. Talk to friends, talk to family. Talk to doctors. I’m a researcher by nature and career path, so I researched the heck out of all the treatments, meds, diets, foods, etc. I bounced thoughts and ideas off friends, colleagues, physicians…smart people 🙂
Knowledge is power. The more I could know about diet and IBD the better.
My Stage 4: Acceptance
Ok. I’ve got this. I might not be able to fix this 100% but I’m going to accept this mountain in my family’s path and climb it or move it with the best of my ability. It’s going to be okay. ‘It’s going to be okay’ became a mantra. We are going to get through this. We are going to be okay. We are going to do the best we can, we are going to continue to learn, we are going to put health as our top priority. Our son has Crohn’s disease and I pray you never know it or see it. I pray he continues to thrive and grow and shine as this beautiful healthy boy that he is now.
You have been assigned this mountain to show others it can moved.
My Stage 5: Positivity
Finally. A positive mind is so powerful and so essential to healing. I can sleep and think clearer now, so I promise you, you will get here with the right mindset. The journey may continue to wind and turn, but we are learning, healing and grateful for both those gifts.
Positivity is where we need to be consciously for ourselves as caregivers and most importantly as models for our children. When life hands us lemons, we make lemonade, right? I’m confident this awful diagnosis has shown my children just that. Our whole family, extended and friends, banded together to get us through this difficult time. We turned to family and faith as the glue to hold us together in this time of trial. Thank you to my wise Aunt M for coaching me through this stage…she learned from the best that optimism is everything.
And now- look where we are now! We are in a place of giving back, starting our story. There’s even more research being done on SCD diet and microbiome (phew! I look less crazy hippie mama now!). I am positive there is a cure in the future, in my lifetime. I cannot wait to see it and an end to this invisible disease.
Keep your face always toward the sunshine, and the shadows will fall behind you. – Walt Whitman