Fighting like a Mother: Mothering my Son’s Mysterious Illness

//Fighting like a Mother: Mothering my Son’s Mysterious Illness

Fighting like a Mother: Mothering my Son’s Mysterious Illness

Like the unwanted surprise visitor that just won’t leave, a brick of anxiety has taken up residence in the pit of my stomach.

This year has been hard. Hard on my son, hard on my family, hard on me.

It started a year ago, mysterious and random symptoms as our middle boy was set to start his last year of elementary school. My Mommy gut kicked in very early – he seemed tired, he had a brand new orthodontic expander and he started getting tons of canker sores. Like more than I’ve ever seen. To the Pediatrician we went. Some blood work, I took a small breath of relief when it all came back normal – we were told it might just be a virus. The canker sores stayed, our champion foodie child was miserable trying to eat.

My Mommy gut sat uneasy.

A few weeks later he started reacting to anything cold on his skin, with enormous hives. My messy ice cream cone eating boy, looked at me with swollen lips in the middle of July.

Something wasn’t right.

Then I did what every diligent Mother of our generation does, and what every doctor hates. I got on google. And WebMD. And Mayo Clinic.

We went back to the doctor. These mysterious cold hives are just something that some people get, might come and go. Really no rhyme or reason to it. Could be a virus.

My son left the room.

I looked at the doctor and cried.

The ugly cry.

The fighter Mom cry, the cry of a Mom who’s only sibling died in his 20s, he died of addiction, not this weirdness, but still I probably have some sort of PTSD, and I want my child to be healthy, and unknowns JUST DON’T WORK FOR ME, just ask my family, kind of cry.

“Mom, were you crying?” “Oh, I’m ok, just a little stressed.” Little did I know what would lie ahead.

A week later, as any third child, little sister, with two big brothers would – baby girl did a running ballet leap to join her brothers on the couch. Only, it wasn’t the graceful landing she envisioned – instead, she rammed her knee into her brother’s knee. The swelling that would follow was astounding.

Mommy gut is screaming. Pediatrician, Orthopaedic, Allergist. In no particular order.

He gets all the tests. X-ray, MRI, bloodwork, meds, he screamed bloody murder as I held his hands and it took two needles to drain his knee.

We hear “maybe it’s Juvenile arthritis, maybe it’s just a strange post-viral reaction. Time will tell.”

Fall comes and goes, no swelling, no hives, only unrelenting canker sores with the orthodontic appliance.

I take a deep breath. Stay hopeful. And worry. Because, unknowns just don’t work for me.

Life takes on the steady crazy rhythm of parenting these days, a rhythm of busyness I would love to reclaim. Running a business, making jewelry, juggling all the parts of girl boss world, always wanting more time to create everything that bounces around in my head. Shuffling between school, activities, food shopping, meal making, bill paying, did I mention food shopping?

The holidays headed at us like a freight train, it’s a time of year I love. It’s also the time of year Erin Pelicano Jewelry is at it’s busiest – making all the pretty gifts that celebrate love.

Early December, I came home one evening and our usually laid back son looked at me, his face filled with anxiety and told me his knee was swelling again. He knew.

The last nine months have been enormously difficult, a roller coaster. Some nights Richard and I flop down on the couch, look at each other – no words are needed, parenting is hard, adulting is hard, and we love these little people with every ounce of our soul.

I could go on for a long time about all that has happened. Dear Lord, I’ve even made a spreadsheet (AKA I’m the crazy fighter Mom who might make jewelry, but has an engineering degree, and I can make a mean spreadsheet, so dear Doctor sorry, not sorry, I have a spreadsheet for you, and did I mention UNKNOWNS REALLY DON’T WORK FOR ME?).

My strong son faces a second colonoscopy in six months, he’s had a swollen knee, swollen hip joint, a lingering swollen ankle joint. He’s had his joints tapped 3 times, 4 MRIs, one hospitalization. He’s been tested for all the obvious infections. He has no tummy problems, yet has an inflamed GI tract. He’s seen specialist after specialist. He’s on new medications to calm his inflammation, and immune system.

I’ve been high on good results, and punched in the gut with abnormal results. Do you hear all of the pharmaceutical ads for IBD and Rheumatoid Arthritis meds? Or is it like when you buy a new car and you start seeing them everywhere? I’d be happy to turn on the tv and only hear about feminine products and erectile dysfunction meds, please dear Lord.

I’ve had to fight with insurance, obviously, that fight isn’t done.

I actually had to fire a doctor, not just switch until I found the right ones for us. She had no idea what kind of Irish Italian fighter Mom she lashed out at – until she did. With an indignant attitude, her actual words to me (because we took our son for a second opinion) were “the reason you are overwhelmed is self inflicted, you’ve seen other doctors”. Wait, what the ****? I couldn’t fathom how any doctor that treats children could talk to a parent like that. After I spelled out for her that I needed actual help and solutions for my son, and that I was not in fact here to stroke her ego, she apologized and decided she truly wanted to help my son. Too late for that, lady.

We are enormously blessed to live near one of the top Children’s Hospitals in the nation. After months of tepid to horrible experiences, we’ve found doctors that we love and trust. But we are still working towards answers, he’s not a typical case.

I’ve cried endless tears of fear, frustration, pain for my child, even happy tears on the upswings.

I pray. And pray.

And I fight on, like a Mom.

He doesn’t feel sick, it is a Blessing.

I know we will heal him, even if I have to fight for it.

 

He’s now considering a career in biomedical engineering, it is a blessing. Maybe it’ll be his life’s work.

I have an amazing support system that includes friends and family in medicine, that have helped guide us.

And tell me to get off Google.

I tell them I can’t.

 

I’m reading and implementing all of the natural options I can find, and he’ll tolerate.

I’m reminded that my life’s work is a blend of expressing my life’s experiences in my jewelry designs, and sharing them because these experiences tie us together.

I’m trying to form a habit of meditation.

But sometimes google wins.

One stumble upon a horror story, and I remind myself to get off the searches.

As mothers, parents, there are unspoken words, silent looks of understanding as you pass each other in the halls of a Children’s hospital. The slight smile says: I see you sister, I feel for you as I know you feel for me.

My belief that I don’t like unknowns, has been affirmed.

 

Gabby Bernstein’s blog reached me the day before my birthday – Lessons on Surrender.

Like she spoke just to me. I’m going to give it a try dear Gabby.

Surrender. And I’ll never stop fighting like a Mom.

sick child, mystery illness, childhood illness, mother son

By |2018-08-30T13:28:38+00:00August 29th, 2018|Motherhood|0 Comments
Join now and never miss new arrivals, special offers, & extra love. Each month one selected VIP is sent a gift.