Crohn’s, Colitis, and Being a Parent

We had the chance to sit down and chat with two very special people about an important topic – IBD and Parenting. In this post, we compare, via discussion, parenting roles with IBD. They share their emotions, fears, and what it means to be a parent.

Frank Garufi, Jr of the Crohn’s Colitis Effect doesn’t have IBD, but his young son does, and he’s just as involved as if he was the patient.

Sharon Saeed of IBD Journeys has IBD and has been through her share of hospital stays, all while being the best mom she can to her amazing kids.

GBM: Tell us about your family. How has IBD touched your family?

Ever since my kids could remember, they know Mommy sometimes goes into the hospital. Especially in the past two years, it has really turned our lives around. Prior to June 2011, I was probably one of “those” moms – if there was an activity, my kids would be signed up for it, I would be on the sidelines, and I even held a board positions at our Sunday School and on the PTA.Sharon: Our family consists of my husband Saad, who I met on the first day of college. I was working at the library and he said to his friends, “I would love to marry that girl”. [Insert: awww!] Our eldest son Mikail is 11 and always was a grade or two ahead, and our little guy, Noah, who is 7, is the athlete but also has an artistic side.

After my surgery in June 2011, I have literally have spent 13 months out of 23 in the hospital. Even when being at home, I was on the PICC line and taking it easy. I didn’t really understand the major effect it has had on the children until this past month, when I have been out for almost 5 weeks. Both my sons have seen major changes in the grades they bring home……but it goes beyond grades.

GBM: Frank, do you experience jealousy between your kids? Does Domenic require more attention than Anthony because of IBD?
Frank: I’m a single Father of two GREAT boys… Domenic who is 8 and Anthony who is almost 7. Domenic has IBD. Domenic is an amazing child in so many aspects. He absolutely loves sports…he can never get enough of them! He’s super quick and smart when it comes to board games and even technology. All I have to do is show him something once and he’s all over it like white on rice. I think the thing that amazes me the most about him is his ability to overcome fear and uncertainty by hitting it head on!

Frank: Anthony has this amazing ability to “roll with the punches”. One day it will be me, Domenic, and Anthony. Then all of a sudden, Domenic and I will be gone for a week or more at the hospital, while Anthony is staying with my parents. Anthony knows his brother has Crohn’s Disease, but he doesn’t completely understand what that entails. But he calls all the time to check on Domenic and see how he’s doing.

This week did show though how Anthony can get jealous when Dom is getting the special attention he needs. Dom went in on Monday for surgery. When we got home Monday night, a lot of attention was being paid to Dom, and Anthony was starting to act up a little bit so that others would start “noticing” him. I sat down with him and explained everything to him and told him how much I loved him too… How just because Dom was getting some more attention right now didn’t mean he wasn’t loved just as much. After we were done talking he started to help Dom in the house and helping to make him feel better.

GBM: Good for you. I think that’s such an important thing to not ignore- I think kids feel the lasting effects of being “prioritized”, or neglected as a byproduct, as a sibling.

GBM: What is the hardest part about being a parent of IBD or a parent with IBD?

Sharon: It has brought an instability to their world…..the world may not be as safe as it seems, because in a moment mom could be not here. I think what broke my heart the most was when Noah came into the ER and i was in radiology getting tests, and I could hear him asking the nurse, “Is my mom going to die?” the nurse replied, “We are taking care of your mom, she is not dead”, and Noah answered, “I didn’t ask if she was dead, I asked if she was going to die.” Those are the hard moments that you wonder how deeply it has affected them.

Frank: There’s many hard parts. The helplessness and uncertainty is probable one of the biggest. There’s times where I really feel powerless over this disease. And I’m also not ashamed to admit that it has caused me to be depressed and have to seek help for it. There’s nothing in this world worse than seeing your child suffer and you’re unable to take that pain away from them.

Sharon: The hardest part for me is the unpredictability of IBD.  Plans that were once concrete can fall through at a moments notice. Have you ever heard a kid say, “But you promised you would take us here or there?” I long to hear my children say that again. All i get now is, “No problem mommy, we will go next time.” The sad part is, next time may never come and they know that. For example: missing Noah’s kindergarten graduation, that only comes once in a lifetime.

GBM: It’s often said that when one person has IBD, the whole family has it too. Do you think this is true?

kids and IBD

Sharon’s sons hang out at the hospital

Frank: There’s no doubt that IBD has invaded my entire family… not just Domenic. For every minute that Domenic is suffering, so am I. For every day that he misses an event, a party, a tradition, or just what every other 8 year old boy gets to experience… I miss it for him as well.

Anthony and Domenic are joined to the hip. They’re only 18 months apart and the ONLY times they aren’t with each other is when they are in school and when Dom is in the hospital. Anthony looks up to his older brother and doesn’t want to do a thing without him. When Dom can’t be there because of IBD, it hits Anthony just as hard.

Sharon: My 11 year old was learning about the digestive system in 4th grade and told the teacher, my mom doesnt have a large intestine and her small intestine goes there. She said, “Mikail, if that happened your mom wouldn’t be alive! So don’t tell such tall tales.” Later on that week, I bumped into the teacher at school, and she said, “Do you have your large intestine?” I said, “No!” She was shocked! It’s things like this, that you know it’s a family affair.

Also, when I get very quiet on a long drive, my husband just knows and says, “It’s only 5 more miles to the next rest stop”, or my little guy is always looking out for me when i eat.

GBM: That’s so great of them. It definitely instills a maturity that can only happen through these life experiences.

GBM: There is evidence that IBD has genetic factors. Do you fear that IBD will continue to leave its mark on your family?

Sharon: When my eldest son was 5, he had a bloody stool and my heart dropped to my stomach. I took a picture of it and took him to a pediatric GI that day. He got the Prometheus test and didn’t test positive for it. I will be testing Noah soon. We didn’t feel the immediate need to test Noah because he is Mr. Regular with this digestive system but as we know, what happens when we are younger is not a definite precursor to some who have their first flare up in their late teens. So yes, testing Noah is on the list of things to do.

Frank: There isn’t a day that has gone by in the last 8 years that I haven’t thought about.. “Was I the one that gave Dom IBD?” Maybe I did… Maybe I didn’t.. But it will ALWAYS be a question I will forever ask myself. I try not to let that question tear me up mentally too badly. Some days I can dismiss it… Other days, it’s a lot harder. We’ve gone back on both sides of the family and can’t find IBD anywhere in the past… So there’s no “smoking gun” on how this really occurred.

As for the future… I dont know if there will ever be a cure for IBD.. But by God, I’m going to work like hell to make sure there is one so that my kids, my possible grandkids, and their grandkids will never have to go through this.

Sharon: Frank, that was really moving and well said!

GBM: What is the piece of advice that you would give your child, if/when they are faced with a lifetime of this disease?

Frank: Dont let IBD own you…You own it!!! While we might not be able to get rid of it right now, don’t ever let it dictate your future. Never allow it stop you from achieving greatness and all of your dreams.

Sharon: The same advice I give to myself each and every single morning for the past 23 years: you wake up and there is a road in front of you with a fork in it. You can choose the dark negative one or you can choose to get up and choose the one with some light to it. However dark the days may seem, always try to find the light.

Specific to IBD, spread awareness, there is nothing to be embarrassed or ashamed about, everyone has something, or is going through something… reach out and connect with others who share the same experience as you. I isolated myself a lot in the beginning and reaching out has been a healing experience all of its own.

GBM: Do you think that IBD has changed your priorities as a parent?

: We agree. So many things that people get worked up about truly don’t matter.Sharon: Prior to it disrupting our daily life, I was a very structured mom. Gymboree, chess, art, karate, piano….the list goes on. Now, we are less structured. If we get to karate today, we get to it, but if we want to skip it and play outside instead, we do that. Our top priority now is to just spend as much time as we can together as a family. All the other stuff is extra, and I’ve realized that being late to a game or missing a lesson is truly not that big of a deal. ‘Not sweating the small stuff’ I think it has been coined.

Sharon: …and it’s all small stuff.

Frank: There’s no doubt that IBD has lead me and my family down another path that I never thought we would be on. When my ex-wife was pregnant with Dom, I thought and dreamed about what being a father was going to be like. Everything I would do…how the future was going to be…never once did ANY of those thoughts and dreams include IBD. I’m walking a path right now that I never envisioned for myself or my children.

GBM: What is the most rewarding thing about being a parent?

Frank: Wow… That’s a hard question. Hard because there’s so many things rewarding about being a parent. If I had to pick just one… It might be living through my children. Watching them grow and knowing that what they are learning, what they are doing, I had a hand in it. I also get to see the innocence of them.. the purity in their hearts and minds… Something that we don’t always get to see when we are out in the real world.

Sharon: The most rewarding thing is watching these little munchkins grow from infancy into these separate entities who have their own likes and dislikes and personalities. Some of it comes from you and some of it comes from your husband, but when they do something that is completely unique to who they are it’s wondrous to see. I await to see what is in store for them for the future, and future choices and hopefully they make good ones. Frank yours is put more eloquently, but definitely the same concept! It is a joy to watch them grow and learn.

GBM: What has surprised you most about your parent/child relationship?

Frank: I think it’s the courage that Domenic shows on a daily basis. It’s a father’s job to teach his son, but in MANY ways, Domenic has taught me just as much, if not more! The way he stares down IBD. The way he confronts it on a daily basis.

The way he shows so much strength and courage in the face of uncertainty. It’s a lesson that I think we can all learn from. I can honestly say that my son is my hero!

Sharon: I am surprised at how independent they have become over the past two years. I’m not sure if I am loving it or missing some of their dependence. They have grown accustomed to waking themselves up with an alarm, the eldest one makes the little one breakfast and packs the snacks, they pick out their own clothes and yell up, “Love ya mom see ya in 6 hours!” as they walk a block to the bus stop. Sometimes I wonder if they had to grow up too fast from this experience but yes, I am quite surprised at how independent they have both become from me because of my prolonged hospitalizations.

Frank: Sounds like your kids are smart and brave, Sharon.

GBM:  What advice would you give to other parents that are in the same situation as you, in regards to IBD?

Sharon: Try to let go of the guilt. I know it’s hard, and know that we are doing the best we can do in our situation. If you can, have your kids visit you in the hospital as they truly need to see that you are ok. We take board games with us, and a deck of cards. Spending time does not have to be in Disney World or a carnival. I notice that even cuddling in bed watching iCarly puts a smile on their faces.

The bottom line is: Kids just want our love and we don’t need to take them somewhere fancy or spend a ton of money to give that. In some ways, being sick has really taught my whole family this!

GBM: That’s so beyond true. It’s a lesson every parent should learn!

Frank: Through my most of my life I’ve always been one that felt in control of things. IBD quickly changes that and you find yourself feeling helpless a lot. You have to learn how to accept that. Love your child. Surround them by the biggest and best doctors possible. Pray like crazy that God will see you through all of it. Partner will IBD communities and help others. But at the end of the day, don’t let the ‘helpless’ feelings own you.

GBM: Has your experience with IBD brought any positives to your family? Lessons you can pass on? Habits that promote health?

I think because of IBD he will have a courage, hope, and ability that was brought about because of the experiences he’s had to face due to IBD. If you can tackle this disease, there isn’t anything in life you can’t do!
Frank: There’s a bond that Domenic and I share that I think could have only come through IBD. We live it together. We fight it together. And he knows that there isn’t a single step he’ll take through it without me being right there by his side through all of it. Dom is still young at only 8 years old… But I think he’s going to go on to do something extraordinary because of IBD. I’m sure in many ways that sounds like a typical and biased father saying that, but I truly believe it.

Sharon: We have truly learned to embrace the moment. One of our favorite things to do on a good day is to drive into NYC at night, ride around Times Square with the sun roof open while the kids get to play DJ, the music is on, windows are down and we are all just loving and living in that moment!

Another lesson is to know what is truly important. Spilling milk on a carpet? Not that big of a deal anymore. It has certainly shifted our perspective as a family in a positive way.

GBM: If you could trade places with your child, and switch the patient/caregiver roles, would you? Why or why not?

Sharon: This is an easy one for me. I am known for saying that I wouldn’t wish IBD on my worst enemy. So never, I would never trade with anyone let alone my loved ones.

Frank: I pray to God every day that he takes IBD away from my son and gives it to me. There’s no doubt that I would take it on in a heart beat if I could. Watching him suffer with it, watching what he goes through is more than any parent should ever have to do! It’s more than any child should ever have to do!

Sharon: That is seriously one of the saddest things I have read or heard! You are a good man Frank, and a great dad.

Frank: Thank you… But I really dont see myself as “great”.. I see myself as a Father who only wants the best for both of my children.. No different than any other parent.

GBM: It’s interesting how quick you both were to answer this question differently. I think it’s so telling about the love of a parent, with IBD in the mix.

GBM: Anything else you’d like to add on this topic?

Frank: The last thing I’d say is: Educate. Educate. Educate. And then Educate some more! Knowledge Is Power! Then go use that power to help someone else!

Sharon: I would honestly love to thank you for exploring this topic, as IBD truly is a family disease and everyone is affected. The more we bring this to the surface, the more support we can get for members who are going through this alongside with us.

Thank you to Sharon and Frank for taking some time and giving us a glimpse into their personal lives. Both Sharon and Frank are active in the IBD community, working to increase awareness and make a difference. Find them at Crohn’s Colitis Effect, and IBD Journeys.