Loving Your Child with Chronic Illness: Part I

From Jesse: Last month 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.

In this first post of a two-part series, my parents chose to answer these questions together. In Part II, you  will get to hear as they each share their unique “mother” and “father” perspectives. 


As a parent, what is it like to watch your child experience serious illness?

As parents, it is in our DNA to protect our children from harm and pain. Your autoimmune illness was not correctly diagnosed until you were in college; however, your childhood health struggles were a battle we fought and tried to fix. It was hard to watch our bright active child struggle with illness. Those battles were against the unknown wreaking havoc on your body. After you were correctly diagnosed, you experienced depression and that was terrifying for us because then the attack was against your
mind and spirit. Any parent would find it hard to stand by and watch their precious child fall into
a dark hole.

Even though all of this was hard on us, we tried to remain strong and positive and to arm you for the fight – with prayer, scripture, advice, spiritual encouragement, listening and presence, talking, and a million pumpkin smoothies. But we felt a certain amount of anger, frustration, heartbreak, and helplessness at our inability to “fix it”. Also, over the years, we have experienced times of fear, anxiety, and uncertainty over what may lie ahead for both you and your sister. If we could take your place, we would.

On the positive side though, as you worked toward regaining your health and your physical, mental, emotional, and spiritual wholeness, your resiliency, bravery, courage, and strength were awesome to watch and continue to be an inspiration to us!

What blessings has chronic illness brought to our family?

As a family, we all have become more fully informed and inspired to continuously work toward better health. Together, we have learned to practice better boundaries, to create a healthier balance in our lives, and to advocate for our needs. We have learned a new way of eating and adopted a new mindset with regard to healing. You and your sister are excellent cooks and, since eating out is rarely an option, we have shared many wonderful meals together as a family.

Yours and your sister’s journeys with autoimmune illness have better prepared me (Sarah) to deal with my own recently diagnosed autoimmune illness. We have learned to appreciate fully the good times when you and your sister are feeling well because we never know when another flare will occur. This helps us to be fully present which is a blessing. Anytime a family shares a common struggle, tighter bonds are formed through shared experiences.

Ours has also been a spiritual faith journey. Sometimes our prayers are not answered in the way we hope for, but God has not left us alone. God has used illness to bless our family with the spiritual gifts of humility, surrender, acceptance, trust, hope, and faith. We have learned to marvel at the extraordinary design of the human body. We have learned the gift of sacrifice. We have learned to practice gratitude and joy as well as courage and resilience.

God has been with us every step of the way. Both you and your sister have used your experience with chronic illness to serve and help others. Your passions and hearts for service have even inspired both of your career choices. Even though this long hard road would not have been the road either of you chose, the journeys have formed you both into the women God dreamed you to be – and that is the greatest blessing!

 

On the flip side, what challenges has chronic illness brought to our family?

Well, God grows our faith when we are tested so, the above-mentioned spiritual journey has not been without its moments of being frustrated and angry over unanswered prayers – there was some yelling at God involved!

Speaking of journeys, travel has been a challenge although we are mastering travelling with our own cookware, grocery shopping in new places, and doing all our own cooking while on vacation. Rental units with full kitchens, advance menu planning, AIP meal delivery, shopping lists, and emails to restaurant chefs have become our travelling norm. Eating out is and will always be a challenge. Trips to the beach boardwalk for a hot homemade donut, ice cream cone, fudge, or French fries are just not an option – although we now know that none of those foods are at all healing in any way!

Finding doctors who will work together as a holistic team has been a challenge. Well, finding doctors who are both Western medicine doctors and open to new trends in functional medicine and alternative healing therapies is definitely a challenge.

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Jesse St. Jean

Jesse St. Jean

I am many things: a wife, a daughter, a sister, a nutritional therapist, a dog-mom… and I’m an autoimmune warrior.

Nutritional therapist Jesse

Hi, I'm Jesse

I empower women autoimmune warriors to reclaim their health by teaching each woman how to make the right food choices to heal her body while confidently owning her journey so she can live a vibrant life with chronic illness.

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