How IBD Patient Milestones Evolve When You're A Parent
When I was pregnant with my firstborn, one of my greatest fears was being hospitalized and needing to be away from my baby. I made a promise to myself that I would do everything in my power to stay out of the hospital until he could walk.
That boy of mine turned three in March. Fast forward to now, my daughter started walking this past month. I had the same hope for her. Luckily, the stars have aligned when it comes to my Crohn's disease.
I'm gearing up to celebrate five years of remission in August, so I haven't had to be hospitalized since starting my family.
The fear and "what ifs" of Crohn's disease
As an IBD mom, the looming fear of a flare and the "what if" can feel a bit suffocating. You hope and pray you don't need to leave your little ones, especially now, as we live through a pandemic and whether they can walk or not, kids won't be visiting a hospital anytime soon.
For anyone who has been hospitalized for their IBD, we know how heavily we rely on the support of loved ones when we're at our worst. I'm more scared of flaring from my Crohn's and being alone during a hospitalization right now than I am of getting COVID-19. And as an immunocompromised person, that's saying a lot!
The power of patient journey milestones
When you think of milestones you may envision a child sitting up, crawling, or walking for the first time. But, the same can be said for those of us with IBD.
Patient journey milestones tend to be more bittersweet than celebratory. I'm talking about the "anniversary" of your diagnosis, or when you started a biologic or had your last surgery. These are important dates for experiences that forever change us.
Some of us are even lucky enough to know when we heard the words from our physician, "You're in clinical remission."
Changes over time after a Crohn's diagnosis
As an IBD mom whose 15-year Crohn's anniversary is happening in a couple of weeks, I can attest to the fact that we evolve so much from the day of diagnosis.
As a chronic illness parent, we change and rise to the challenge day in and day out. From fatigue to pain, the days often feel very long while the years fly by.
Try not to be consumed by guilt over flares
Whether your babies can walk before you get hospitalized may not matter to you, but it mattered to me. At the same time, getting blindsided by flare-ups is out our hands, so try not to beat yourself over the fact that you need to be hospitalized while your little ones are at home.
If anything, the added bonus is that that they won't remember! It will be harder on you, than them!
Even with my kids just being toddlers, I'm seeing empathy through so many of their actions already. While you may feel guilty or like you're a burden to your family, trust that you are not.
Your experiences and resilient handling of the day-to-day are being watched when you least expect it, molding your children into super special understanding little beings.
I'm hoping it will be several years before my kids need to see their mommy in a hospital bed instead of being home. But for now, I'm relishing the moments of remission with my family, grateful for each day, even the most mundane.
Does exercising regularly help in the management of your symptoms?