Parenting Consistently with an Inconsistent Disease

Hi everyone! Sharon Coyle-Saeed is back with her monthly blog post! Keep reading below, and look for her posts at the beginning of each month!

Parenting Consistently with an Inconsistent Disease

By Sharon Coyle-Saeed



Prior to my health taking a turn in 2011 with more bumps than a rollercoaster ride, I was a proud , regal, and ready to pounce,  “tigermom”  with a tendency to hover in my side role as  a “helicopter parent” to my 6 and 9 year old sons.  Upon decluttering my closet this past month, I found a calendar from 2010 which had no less than five of their activities jammed into each day. A typical day would have a check list like this. Library Story time, check. Volunteer at the elementary school, check. Make interesting and balanced fresh meals daily, check. Laundry, iron and hang clothes by color and fan out the arms, check. Art lessons, check. Piano lessons, check. Magic lessons, check and karate (both at different times for each child as they were at different belt levels), check.

Also, both of my children were signed with a New York City modeling agency.  Which meant, at a moment’s notice, I switched my hat off from Treasurer of the PTA to stage mom. I still recall the days of picking them both up from school, and plopping them into a double sit and stand stroller while buying train tickets for NJ Transit, getting out at Pennsylvania station, and walking several blocks to their modeling shoots while making sure they were fed snacks, water and utilized their down time reading books that challenged their Lexile range.

I supplemented their studies at home with Kumon workbooks and any homeschooling activities I could get my hands on. Every moment was a teaching moment. The walls of our kitchen and living room were filled with addition and multiplication posters and maps of the world.  We even had a title for our home school and a theme song, “Elder Elementary,” named after the street where we resided.

Until one day, I had a pain which kept gnawing at my insides. I was diagnosed with peritoneal inclusion cysts. They were the size of two grapefruits resistant to aspiration, surgery was strongly suggested.  “It will be an in and out surgery,” they said. “You will be in for only 24 hours,” they said.  On June 6, 2011(my personal doomsday), I had a surgery which ended up in another surgery and a whole summer spent at Mount Sinai Hospital. I was released with a PICC line, TPN and a life that has never been the same since.  From 2011 till today, I have spent 50% or more time in the hospital. 2016 was supposed to break this trend. I hate to admit, but I am typing this blog piece from the hospital.

What was this tigermom who could out tiger the fiercest amongst them to do? Slowly but surely, I had to give up control. Unfortunately, activity after activity was dropped for no one was able to take them to and fro.  My sons primary after school activity became visiting me in the hospital, learning where the cafeteria was and eating way too much candy from the gift shops.

I had to let go of being the strict “overscheduler” and transitioned into the “lenient parent”, “the good cop” or “the all you need is love” mom. I did not have the heart for the short amount of time I was around them to bark out orders. So, I didn’t. Bedtimes that were a strict 8pm turned into a cuddle fest to whenever the heck they fell asleep. You don’t want meatloaf for dinner and rather have pancakes and fries? Why not? I think you are getting the picture.



Zip forward to 2016. My sons are now 13 and 10. A few weeks ago, I had to step back to assess what is really going on here.   It could very well be the age, although I think there is more to it than that. Dare I say, they both have a tendency to sass back a bit? My husband and I tried to overcompensate for what we both felt was a very unfair and unfortunate web they got tangled up in. This led to the start of our sons developing some traits of Willy Wonka’s character, Veruca Salt and we all know she turned out to be a bad egg. I say the start of because I felt that all was still not lost. These are good kids who were craving consistency, discipline and some bad cops.

Last week I called a family meeting. I took the lead in the conversation and like parched nomads sipping water in a hot desert, I could see my sons eyes looking at me with a sense of relief.  I almost heard their souls call out softly, she is back and it was then I realized, they didn’t need less consistency when inconsistency came flooding in, they actually need more. We spoke about what extra activities they will pick up, the expectations on their classwork, the chores around the home they will do and most importantly, showing respect to their parents, each other, and elders.

Today, when my eldest son came to visit, I was curled up in a ball of pain. I did catch out of the corner of my eye him giving up his seat to make room for my mother to sit down. He listened to my words the other night and was putting them into action. I said to him, “I really like the way you just gave your seat up for your grandmother.”  It was then I knew that it is not too late and the kids will be okay. Just because I am inpatient, doesn’t mean I only need to be the cuddle and snuggle parent. I can also step up to the plate and take some of the bad cop away from their father who really kicked it into high gear a few years ago.

On the positive, my children have gained a lot from this experience of having a chronically ill parent. They have greater empathy. They also are extremely independent. They both wake up in the morning on their own, shower, brush their teeth, get dressed, make their own breakfast and walk out to the bus stop. I think my favorite story to share is from Christmas of 2011. I was hospitalized from right before the holidays up until the first week of March. They both insisted on not opening their gifts till I was home. A beautiful lesson of delaying their own gratification. Very tough for adults and proud that they both grew in this self-actualizing moment as children.

I don’t think I will ever go back to the fierce tigermom. I have changed my stripes. Nor will I go back to let them do what they want mom. Children need direction, support and guidance.  A balance between the two in this imbalanced unpredictable world of chronic disease seems to fit just right.


Author Bio:

Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:

Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater.  Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from  Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire. 


4 thoughts on “Parenting Consistently with an Inconsistent Disease

  1. Sandra Price says:

    Scott Russell told me to come read your blog post. You are a very strong woman. I wish you good health and family contentment.

  2. Joan M Carignan says:

    Thanks for sharing your story and the wisdom you have gained from your very frightening ordeal – which is not over. You have learned an enormous amount about handling the many different kinds of pain, as well as the stress a chronic illness can cause, while remaining positive, nurturing and loving. I applaud you for letting your sons discover how much they can do for themselves – something they may appreciate as well.
    I look forward to hearing more about your journey and wish you blessing along the way.

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