From Jesse: In April I introduced you to my husband, Jesse, as he shared his experience being married to someone with chronic illness. This week I am excited to introduce you all to Samantha and I’s incredible parents. Many of the stories out there about living with chronic illness are from the patient’s perspective, but it so often affects every member of the family. So I felt like it was important to give my parents the opportunity to share their experience of having two children with autoimmune disease.
You can check out my parent’s collective response in the first post of this series. Today, you will get to hear as they each share their unique “mother” and “father” perspectives.
What moments or issues have been the most challenging for each of you, personally?
Mom: One challenge that comes to mind was the challenge of helping you to have normal high school experiences like attending youth group retreats and summer camp, or going to sleepovers, etc. while still having you follow a strict gluten-free diet. Thirteen years ago, gluten-free eating and eating to avoid food allergies and sensitivities was not as easy nor as widely understood as it is today. And so, I made specially marked food for your youth group retreats and sent you to summer camp with coolers of specially marked food. Remember the summer after your junior year in high school when you attended the Virginia State Governor’s School for Performing Arts and I (loudly) fought with the dining hall almost daily about your food – and in the end I prepared all your food and drove it down to you? That was crazy!
Dad: One challenging time for me was helping you make the best choice for college given your interests and dietary needs. You had not yet been diagnosed with autoimmune UC, but you did follow a strict gluten-free diet (and should also have been following a dairy-free diet), and you struggled with being frequently sick both generally and with gastrointestinal issues. We wrestled with important questions like, “how far from home should you be in the event you need us and/or medical support?”, “how can we find a school that will accommodate your dietary needs and have good medical support while not having to settle for a school that might limit your academic and social options?” Critically important was to identify colleges that provided truly healthy food options that would minimize your chances of becoming debilitatingly sick and losing school time.
As a result, we made a point to speak with every Dining Manager during each college visit. Working at a large university myself, I know first-hand how important food options are for students away from home. I remember that one college Dining Manager we visited proudly told us that he provided gluten-free pizza for his gluten intolerant students. I thought to myself, “Well that is great, but you can’t eat pizza 3 times a day for 4 years – even if you are a college student!” It was an eye-opener to discover how little most colleges knew about food allergies and sensitivities and healthy eating in general. We were able to navigate this successfully by finding a college about 30 minutes home. You were close enough to come home often, and your mom and your aunt cooked food and drove it down to you. After you moved to an apartment your second year, you were able to cook for yourself.
Like me and Samantha, many people don’t receive an actual diagnosis until adulthood. As a parent, how did this play into your experience?
Mom: As a mom with mama bear protective instincts, I have wrestled predominantly with feelings of guilt over both yours and Samantha’s delayed diagnoses. Samantha began to experience “doubling over” abdominal pain when she was in the 8th grade, and received her definitive autoimmune UC diagnosis during her senior year of college! Of course, I took her to the doctor multiple times and her doctor directed us down the path of gynecologic investigation. She was put on oral birth control to alleviate what was believed to be endometriosis and even underwent exploratory surgery as a junior in high school. I can’t count all of her trips to the ER for what we believed to be ruptured ovarian cysts. My own story was a personal history of gyn related problems and so I thought her problems were genetic. We missed the mark entirely – talk about “mom guilt”!
With you, your issues began literally before you were born – you were premature like your sister and you passed meconium (your first poop) in the womb. So, with the fear that you would aspirate, you were born via C-section (like your sister) immediately. You were sick as a newborn and we were told that you were lactose intolerant and so you spent your early years on soy formula and then lactose free milk (turns out that you are allergic to the milk protein casein not the milk sugar lactose). You were prone to illnesses throughout your childhood. You had terrible diarrhea as a baby and the doctor tested you for parasites; and I tried to be careful introducing new foods. We diligently monitored your lactose allergy throughout your life (too bad we protected you from the wrong element in the milk!) and we visited family doctors, ear/nose/throat doctors, naturopaths, had you tested for celiac disease (turns out you are severely intolerant of gluten but do not have full-blown celiac), began a gluten-free diet and even visited a pediatric gastroenterologist when you were in high school (who wrongly diagnosed you with IBS). You also were always an anxious child who matured to adolescence very early like your sister (thank you soy formula!) and so many times your “tummy troubles” were confused with menstrual cramps, ovulation, or anxiety/nervousness. So, again, there was a life-long delay in receiving your actual diagnosis in the spring of your sophomore year in college!
I understand logically that I am a good mom who took both of you girls to the doctor and followed all of their advice. I cared for you and worried over your health and did the best that I could with the information available to me at the time. But, the emotional mama side of me still wrestles with guilt. Why didn’t I know then what I know now? Of course, hindsight is 20/20 and I couldn’t have known back then all that I now know. But I still wonder how could I not have known all the problems that C-section preemie births can cause? Why didn’t I know more about food allergies and intolerances? Why didn’t I more strongly consider gastroenterological problems as a possibility over gyn and anxiety related issues? It is my personality to be hard on myself, so I work to let go of feelings of guilt. Rather than focus on our years of failed attempts to get things figured out, I am grateful for the diagnoses and healing you both have received. I focus on the blessings our family has received through your illnesses; and I offer myself grace for doing the best that I could.
Dad: Both yours and your sister’s illnesses seemed to defy everything I was taught about growing children – “build a healthy body by eating whole grains and drinking your milk”, “children will grow out of ‘it’ as they develop”, etc. Inflammatory Bowel Diseases are not only adult diseases yet the doctors never really looked in the IBD direction since, perhaps, these diseases weren’t as widely understood back then or weren’t thought to be childhood illnesses. This, of course, led to years of trial and error. As a parent, even though you don’t know what you don’t know, there is still a feeling of guilt that answers were not found sooner and damage wasn’t minimized earlier. We wish we could have found answers earlier, but we offer ourselves grace over the guilt and move forward embracing life and the future while always being hopeful that new discoveries toward a cure for IBD will be found.
Do you have any tips for other parents who have children with chronic illness?
Mom: Recognize that the roller coaster ride of emotions you are feeling is normal. Recognize that the
sack you are carrying of different feelings is also normal. It is perfectly normal to feel both helpless and empowered in the same week, or to feel angry and joyful in the same day. Try to reach out to others who have already navigated this road. These warriors can offer you encouragement to keep up the good fight, space to vent, grace to forgive, and support for the long journey ahead. Ask questions, do your research, and arm yourself with information. And, most importantly, don’t lose hope and do go easy on yourself.
Dad: Be an encourager and teach your child to advocate for their needs. Help your child to not feel
like a victim. Acknowledge the real difficulty and pain associated with the illness but help your child see beyond the dark days and to not let the illness define them. Their illness is only a part of their story and who they are. Embrace the same healthy practices you make for your child and be open to new food traditions around the holidays and vacations. Don’t blindly accept what a doctor tells you, often it is a one-dimensional medication approach rather than a holistic approach. Take a more holistic view by managing the illness medically but also with lifestyle changes, diet, emotional support, spiritual care, etc. Be open to the idea of managing illnesses from professionals other than MDs, for example, functional nutritional therapy practitioners, acupuncturists, and massage therapists. Gather your support team! And, remind your child that they are not alone!