Meet Erika Slater. She and her family live in Coppell—including her son Hunter, who has autism, diabetes and other autoimmune diseases. In this installment of #FamiliesOfDFW, she tells us how even in the hard times you can still be grateful.
Thanksgiving will always be a tough time of year for our family. Eleven years ago, we traveled to Wisconsin to visit our extended family, excited for our children to see real snow, participate in games with their cousins, and eat plenty of the traditional dishes of the holiday.
Unfortunately, the day before Thanksgiving marked the beginning of our journey with autoimmune disease. Our son, Hunter, was only 17 months old when he contracted an infection that would leave permanent changes in his brain chemistry, while attacking his body’s healthy cells.
His brain was on fire, and as autoimmune encephalitis started taking over his body, it also took away our son with it.
His skin started to depigment as he developed vitiligo. He couldn’t tolerate wheat and gluten, as he was headed toward Celiac disease. Our sweet, smiley, happy boy no longer enjoyed music, or playing with friends; he started walking on his toes, and his sensory defensiveness turned simple family outings into full-blown rages.
His language did not regress—but his social aptness, his demeanor, his personality, everything changed within a few months of the illness.
Even though our pediatrician declared him “perfect” at every appointment to explore the latest rash, recurrent strep throat, ear infections, or other viruses that would not go away, we knew that there was an underlying cause for the changes we were experiencing.
As he fell into a world of social isolation, oppositional defiant disorder, OCD and anxiety, he was diagnosed with autism as the permanency of our new life was becoming evident in our eyes.
At the age of 5, after visiting countless specialists, physicians, infectious disease doctors, neurologists and other hospital staff, we found the neuroimmunologist that would change Hunter’s—and our family’s—life.
The doctor recommended IVIG [intravenous immunoglobulin therapy] after a series of blood draws, steroids and other diagnostic criteria. And to this date, Hunter is deemed “in remission” after 23 IVIG infusions.
Intravenous immunoglobulin saved our son’s life, as new blood cells overtook the confused blood cells that had been attacking healthy tissue in his body. We started to see our son again. We started to live again. We started to regain our “normal.”
Last November—and almost exactly to the date 10 years prior when we initially started this journey—we were given a new diagnosis to conquer.
A few days before Thanksgiving, we took Hunter to the ER due to frequent urination and excessive thirst, and they measured his blood sugar levels over 600. Thankfully, he wasn’t in DKA [diabetic ketoacidosis], but he was diagnosed with Type 1 Diabetes (yet another autoimmune disease) due to his elevated glucose, presence of ketones and positive autoantibodies.
The heartbreaking part for us as parents was not only having to stick him daily for the rest of his life, but that we were just starting to feel somewhat normal again.
Our other children were finally regaining the attention they deserved. Hunter had started to make real friendships. My husband and I had resumed our date nights, and we were feeling like we had made a positive stride in Hunter’s recovery.
As we started to transition to yet another new normal, our endocrinologist made a significant statement that has resounded daily in our minds: “Diabetes didn’t just happen to Hunter. It happened to your family.”
Our priest at the Thanksgiving mass said to be thankful for the hard times. And this past year has been a difficult road to navigate.
With Hunter’s four autoimmune diseases, he is considered high risk for the multi-inflammatory syndrome, which has been associated in some children diagnosed with COVID-19.
There are days when I am so angry for his countless struggles, for having to participate in online learning so he doesn’t fall ill, for isolation from peers and distant family members, for losing his ever-important routine—like piano lessons, swimming in a community pool, and tutoring. And for the comments that pull at your heartstrings… “I’m just not an ordinary kid.”
This year, we celebrate Hunter’s first “Diaversary” (the anniversary of the day that someone was diagnosed with diabetes). It’s an interesting concept to celebrate something so painful— emotionally and physically—if you consider that he will have endured 1,460 insulin injections over the last 365 days. We can never have a meal or a special treat without a complete carb count and artificial insulin. Mealtimes are the heart of social gatherings, and from now on, we won’t be able to spontaneously join others for a patio dinner without pre-planning.
So why celebrate? It’s simple.
Children can be advocates for those who struggle, whether physically, emotionally, or silently; and we have seen empathy through the hands and feet of our neurotypical children who understand the sacrifices that Hunter endures on a daily basis.
We celebrate that #kindnessiscool and our family has made it our mission to treat others with respect and grace—as you never know the silent battles others are facing.
We celebrate our marriage; in that we have beaten the higher odds of divorce in families with special needs. We also celebrate small victories that make every hard day worth the journey.
This year, as we sit around the table with our immediate small family to remain safe in these unprecedented times, I’ll be thankful for my husband, my empathetic children, Hunter’s bravery, friends, family, school support staff, and research.
Oh, and wine. I’ll be thankful for wine, too.
Photo courtesy of Chera25 Photography.
