Growing through the grief of COVID-19: Love, A mom with daughters recently diagnosed with Crohn’s

Life was much different for Michelle Manasseh and her family of Orange County, California, one year ago. For starters, her daughters had not been diagnosed with IBD and we weren’t living in the middle of a global pandemic. This week, Michelle shares what it’s like being a parent of two kids newly diagnosed with Crohn’s Disease, while trying to navigate everything that is COVID-19.

It hasn’t even been nine months since Eve (age 11) and Ruthie (age 9), BOTH of our kids, were diagnosed with Crohn’s, and BOOM—COVID-19 happens! So yeah, let’s pile pandemic on top of chronic illness, on top of school being cancelled indefinitely, on top of no contact with any. other. human. soul. for. weeks. on. end. What do we call this? Grief. 5EEF5B29-5EB9-407F-9154-F708F04B5F38

There’s no other name for it. Our whole culture is grieving. One important lesson that the kids’ diagnosis has taught me is how to grieve. And I mean how to really grieve. Parents of kids with IBD know a thing or two about grief. We went through it when our kid was diagnosed, when the next kid was diagnosed, when the flare hit, when the medication changed, when the game plan failed. It comes in waves and it comes out of nowhere.

Our culture has taught us to numb and distract – don’t do it! Don’t miss the chance to be refined by the pandemic fire. Yeah, it’s uncomfortable, but we need to let ourselves feel emotions so we can come through this with true peace and wisdom. If we avoid the fire or pretend it isn’t there, we are doing ourselves – and our kids – a disservice. We need to teach them that grieving is normal and ok. It’s ok to cry. It’s ok to be angry. It’s ok to be sad. We need to remind them that we are all feeling the same things and we will get through it together.

We can’t fix this

Something I realized pretty quickly after my girls were diagnosed with Crohn’s Disease is that I couldn’t fix it. There wasn’t a single special diet, mix of herbs, supplements, exercise, tincture, oil, weed, seed, handstand, or flip that could fix it. And this was a painful truth to learn. As a parent, our natural instinct is to fix things for our kids. We’re stocked with band aids, kisses, and unsolicited advice.

Crohn’s is beyond my control. This has been very humbling for me. Likewise, COVID-19 is humbling our culture. I think it’s revealing a huge blind spot. With the rise of self-proclaimed health experts and medical misinformation circulating broadly across our connected culture, people have believed that they can fix all their own medical problems. Now that blindness is obvious. Just as IBD is not a stomach ache, COVID-19 is not a common cold. We can’t fix it. People are feeling helpless and turning to doctors in desperation. I hope a silver lining is that it invigorates the medical profession and brings to our culture a profound respect for doctors, nurses, and all healthcare workers.

Uncertainty illuminates

For the first time in several decades, the whole world is living under a bleak cloud of uncertainty because of COVID-19. A similar dark cloud rolled over our home last summer when Eve and Ruthie were diagnosed with Crohn’s. I learned that with great uncertainty comes deep discomfort. It forces us down tunnels of self-examination, to take stock of our lives and our purpose. It illuminates our utter dependence on God.

Crisis also has a way of illuminating our deep-seated motivations. Who are we seeing on TV and across social media lately? People with the purest motivations. Doctors. Actors reading sonnets and bedtime stories. Public officials creating guidelines to protect us. Musicians playing across balconies. This is a great teaching moment for our kids. Become a financial advisor to help people. Be a writer to reveal truth. An artist to bring joy. A doctor to bring healing. A musician to bring beauty. An actor to tell stories that need to be told.

What can we do?

Parents – we are navigating a global pandemic with immunosuppressed kids with chronic illness. Let’s be honest, we have massive fears. I had to bring Eve in for an MRI two weeks ago. In my mind, the machine was basically a plastic tube crawling with yellow spindly germs. Never mind a mask – why didn’t someone plastic wrap my child?!? IMG_8604

We are dealing with a heck of a lot, and none of us is perfect. I’m quite certain that my kids will never again ask to be home schooled. The main skill we’ve mastered so far is how to do a Zoom conference while driving to infusions! On Friday night I sipped wine while the girls smeared Nutella on crackers after eating only half of their dinner. Two days later I inadvertently put Eve’s daily Miralax in Ruthie’s water bottle. (Oh gosh, is she flaring!?!) I, for one, would relish a shirt that says “WORK IN PROGRESS” printed in bold neon letters.

No, we aren’t perfect, but we do have something to give. We have a unique perspective and experience. We can be a voice. More importantly, we can be an ear—for our kids and for others. Call a friend and listen. Tell people the good things you’re thinking about them. Tell them you love them. And very importantly, take the time to thank your kids’ teachers, doctors, and nurses for all they have done and continue to do—they are real life heroes.

 

Coping with the fear of loss while living with IBD

It was love at first sight. From the moment he entered the room, I knew there was something special about him. He was shy, yet grabbed the attention of everyone around him. Timid, but gentle. So handsome and regal. His name was Hamilton. He had been sold on the street for $10 by his original owner to little girls in the neighborhood. Their mom brought him into the animal shelter, and he landed a spot on the weekly Humane Society segment on my morning show, desperately looking for a new home. IMG-4343

We went from being strangers to family in a matter of minutes. During that segment, I announced to thousands of viewers tuning in that I was going to adopt this dog. Here I was, 26-years-old, had never owned a dog in my life, but in that split second, he stole my heart and changed my world.

Fast forward nearly 10 years later, and Hamilton James (as I call him), has been my sidekick through the good, the bad, and the ugly. We’ve lived in Wausau, WI, Chicago, Springfield, IL and now St. Louis. Whether it was waking up at 2 a.m. with me when I worked morning shows or cuddling me on the couch during break ups, flare ups and post-surgeries, he’s been such a source of unconditional comfort and happiness in my life.

It’s difficult for me to imagine navigating life with Crohn’s and my day-to-day with my family, without him. Obviously, I knew the time would come—but not this soon. Hamilton has recently started having seizures and breathes laboriously at times. After he took a terrible tumble down 13 stairs last weekend, IMG_4315I took him into the vet and a chest x-ray showed he has congestive heart failure. The vet gave him a day to a year to live. When I saw the size of his enlarged heart in his tiny body, my heart sank. My world stopped. The tears flowed. And immediately, I felt my Crohn’s symptoms return.

Since starting his seizure medication and being put on Lasix (oh joy, a chronic illness dog—just what I need!), he seems very much like his old self—but the thought of what’s to come and knowing his health is not what it used to be, cuts me deeply. He’s my first baby. I can’t fathom what it’s going to be like to wake up and not see him. This week I’ve been struggling with anxious thoughts about what his final moments will be like. Those anxious expectations translate into gnawing pains in my abdomen that last for hours.

A6865E4F-A38B-4277-B771-2BA1F5AAC900As a mom of two and a wife, I know I need to reel it in and start coping so I don’t land myself in the hospital. But, the sadness, stress, and worry only feed my illness. What’s a girl to do? Whether you have a chronic illness or not—losing a four-legged family member is devastating and heart-wrenching.

Here’s helpful advice I’ve received from family members and friends about dealing with the pain of having a sick pet and knowing their days are numbered:

 “One day at a time. Don’t think about losing him, only think about how much you love him and how you have both enhanced each other’s lives. Key point—live in the moment, otherwise, you will make yourself sick and drive yourself crazy.”

“He’s been by your side and comforted you when you were sick, and now it’s your turn to be by his side, comfort him, and make sure he’s not suffering.”

“Exercise and focus on your stomach when you breathe, not your chest. Limit caffeine, alcohol and chocolate.”

“Some local shelters have pet loss support groups if that’s something that might help you.”

“Find a healthy outlet in which you can express your emotions, if you do any kind of mindfulness practice, do it. Stay on top of your symptoms and check in with your doctors often.”

When I think of managing my IBD, Hamilton has been and continues to be a big part of my patient journey.

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Post bowel resection snuggles

Calming my anxiety and coping with the pain that is ahead is not going to be easy and something I know I will continue to struggle with—but in a way it helps to know the reason behind my symptoms and why they may be present.

Much like life with Crohn’s, there’s no sense in waiting for a flare up or a hospitalization to happen. Rather, it’s all about celebrating the good times, taking everything a day at a time, and making the most of the calm before the storm. Instead of dwelling on the inevitable and being miserable, I want to soak up the beauty of the right now. Instead of letting the sadness seep into the remaining days we have together, I want to continue to discover the joy he brings to my life. IMG-4460

I plan to use that perspective and that strength to be a rock for Hamilton and bestow upon him the same love and support he’s given me since we crossed paths that unforgettable January morning on Wake Up Wisconsin.

5 Tips for dealing with grief while battling IBD

Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.

IMG_2516When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.

On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.

It pains me to write and to say those dreadful words. photo by J Elizabeth Photography www.jelizabethphotos.comI have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.

What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? IMG_9748What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?

I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.

  1. Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
  2. Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
  3. Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal. IMG_4352
  4. Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
  5. If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.

Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.

Wishing you a very merry, healthy Christmas and New Year

Hope everyone had a wonderful Christmas! Sorry about missing my normal Monday post– this holiday season has been bittersweet. My grandmother passed away December 22. She and I were extremely close and it still feels surreal that she is no longer on this earth. Stay tuned for a blog post after the New Year about handling grief while battling IBD.

In the meantime, I thought I would share some holiday cheer from my family to yours. Wishing you a healthy, happy, flare-free year ahead! Thanks for all the love and support you send my way, all year long.

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