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5 Important Lessons My Son’s Crohn's Diagnosis Taught Me

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Hearing that our 3-year-old son has Crohn’s disease was hard — very hard.

For us, it marked the end of a frustrating year in which our concerns about our son’s health had been ignored. His doctor repeatedly passed off his symptoms as just a toddler thing that would sort itself out.

Things reached crisis point last year when his symptoms became acute, and we were regular visitors to our local doctor, walk-in center and child assessment unit in the hospital. A misdiagnosis meant that he continued to get worse. By the time he was admitted to the hospital, he was seriously ill and had to undergo invasive procedures and treatment, which left him (and us) traumatized.

We decided to live in the hospital with our son to support him during his treatment and recovery. This wasn’t easy, and it meant that his newly born brother spent just over the first month of his life living in the private hospital room we had come to call home.

As a family, we entered the most difficult time of our lives. But out of this darkness, came light. Our experience was a wakeup call, and it had a profoundly transformative effect. We left the hospital with a steely determination, a focus on being positive and a new outlook on life.

Coming to terms with my son’s diagnosis wasn’t easy, and, of course, I would wish it away in a heartbeat if I could. However, rather than dwell on the limitations that Crohn’s could present, I choose to focus on the positive lessons that our experience has brought into my life.

1. Don’t underestimate the strength you have.

If someone had sat me down and explained all the things I would go through with my son in order to get his diagnosis, I would have said, “I just can’t do that.” During my son’s flare, I had to dig deeper than I imagined possible, but I connected with physical and psychological strength I didn’t know I had.

My son’s need for me awakened a primal and protective instinct. Caring for a child with a chronic illness can be challenging, and I still draw upon this powerful energy source now when things get tough. It’s comforting to know that no matter what Crohn’s throws at us, I have the energy to keep positive, deal with it and not let it drag us down.

2. People are innately good.

During the tough times, I was always reminded of people’s capacity for kindness. The support our family and friends offered was phenomenal and it helped to keep us going. We were so incredibly grateful for the practical support (like doing our washing), the emotional support we received during visits and the messages that let us know people were thinking of us and we weren’t alone.

Bonds between our family and close friends were strengthened beyond measure, and we realized how fortunate we are to be surrounded by amazing people. I continue to benefit from this kindness as people around me can see and sense when things getting tough and help pick me up and get me back on the right track.

3. Crohnies are strong.

After my son’s diagnosis, I connected to other members of the Inflammatory Bowel Disease (IBD) community through Crohn’s and Colitis UK, The Mighty and people in my local community who also have an IBD diagnosis. I was grateful as people I knew came forward and shared their diagnosis with me. The IBD community is incredibly supportive, and I feel strengthened knowing we’re not alone. Their stories keep me positive and provide countless role models to inspire my son as he grows up.

I’m also in awe of my son — his physical and emotional resilience never cease to amaze me. He meets the challenges of IBD head on and manages his symptoms with maturity well beyond his years. He has no idea of just how remarkable he is and so it’s my job to show him.

4. Live in the moment.

Before my son’s diagnosis, I was a planner. I was cautious and I overthought things. Living with the uncertainty of IBD has taught me to be present. I don’t know what the future might bring, and I can’t control what will happen. I can, however, make the most of every moment I have now. Life is just too short. If an opportunity presents itself, then I just go with it. I am committed to fitting as many positive experiences as I can for my family and making the most of each moment we have together. Things I used to take for granted like a walk in the park have a new meaning to me because if my son gets ill again, that simple pleasure will be taken away from us again for a while. I have learned to find joy in the “mundane” and not take anything for granted.

5. Love is an amazing healer.

People’s kindness not only helped me through the tough times in hospital, it also had a
profound effect on my son. The handmade cards from his friends and the visits from family members lifted his spirits immeasurably and helped him to face the treatments he found distressing. I could see how these gestures gave him more fight and reminded him that there was an end to what he was facing. It was just a matter of time before he was home spending time with his friends who love him.

One of the most unexpected and remarkable things I witnessed in hospital was the bond between my son and his newborn brother. Even though he was a few weeks old, my younger son was incredibly tuned into his brother. His smiles lifted sprits when they were low, and he offered comfort to his brother and his parents. Even now he shows an exceptional level of empathy towards his brother, and they look to each other for support. The bond they have developed is astounding, and I know that they will always be there for each other.

Lead photo source: Thinkstock Images

Originally published: August 31, 2016
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