I Don’t Have to Worry

Ryan and I as Marvin and Tammi

I worry about my son because that’s what moms do.  

But my worries extend beyond the usual parenting worries.  I worry about how my son is being impacted and affected by my invisible disability.

I struggle each day with being honest about my levels of pain and fatigue, because I also don’t want to shortchange Ryan or frighten him in any way.  It’s not his fault that I hurt.  But “this” (my medical condition) is a part of our life.  And most likely always will be.

Ryan often reaches out a hand to help me when he sees me struggling to stand up.  He knows, and has known for years, about the bottles of medication on the kitchen counter.  In fact, when he was just a toddler he popped a small piece of cucumber in his mouth and chewed and swallowed it with a glass of milk, telling me he was taking his medicine just like mommy.  It broke my heart.  

But I’d like to think that my son is also being raised to look at people with increased levels of compassion, patience, and acceptance.  I hope that my struggles show Ryan that all people struggle with something, even if it isn’t initially apparent.  At the same time, I hope I’m also teaching Ryan resilience and tenacity, and that there are many different ways of demonstrating bravery, courage, and strength.

Still I worry.

And then my son will do something that will totally blow me away, will fill my heart with love and pride.  And I’ll breathe a little easier, knowing that Ryan is alright; in fact, that he’s more than alright.

When Ryan was a little guy, we would often sing along to songs on my computer, using kitchen utensils as “microphones.”  We still sing all the time.  In the car, in the house, in the market.  But for the last month or so, Ryan and I have again been regularly performing one of our favorite duets, “Ain’t No Mountain High Enough.” I love that it’s still fun for my almost-11-year-old to sing with his mom.  And I love that this is one of our favorite songs to sing together.

Because really that is the message I want Ryan to grow up learning.  That we are a family.  We’re in this together.  

“If you need me, call me 

No matter where you are

No matter how far don’t worry, baby

Just call my name 

I’ll be there in a hurry

You don’t have to worry

‘Cause baby there 

Ain’t no mountain high enough

Ain’t no valley low enough

Ain’t no river wide enough

To keep me from getting to you, babe.”

And, if you haven’t seen the 1998 film Stepmom with Susan Sarandon and Julia Roberts, click here to see a fun scene featuring a family sing-along of “Ain’t No Mountain High Enough.” 

 

Inspiring Words

Women’s History Month is celebrated throughout the month of March, and last Friday, March 8th, was International Women’s Day.

In the spirit of celebrating innovative, pioneering women, I’d like to share some quotes from my most recent library discovery.  (On a side note, this is why I can’t merely browse online for a book.  I need to wander and peruse the shelves, because I never know what I’ll find, what book will be waiting for me when I need to read it.  That was the case with this book: Great Quotes from Great Women – From Marie Curie to Michelle Obama – inspiring words from women who have shaped our world.)

I haven’t finished the book yet, but here are some of my favorite quotes so far:

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

What you do makes a difference, and you have to decide what kind of difference you want to make.” – Jane Goodall

For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone.” – Audrey Hepburn

You can’t make decisions based on fear and the possibility of what might happen.” – Michelle Obama 

I am an example of what is possible when girls from the very beginning of their lives are loved and nurtured by people around them.  I was surrounded by extraordinary women in my life who taught me about quiet strength and dignity.” – Michelle Obama

There are many little ways to enlarge your child’s world.  Love of books is the best of all.” – Jacqueline Kennedy Onassis

I do the very best I can to look upon life with optimism and hope and looking forward to a better day.” – Rosa Parks

I would like to be remembered as someone who was not afraid to do what she wanted to do, and as someone who took risks along the way in order to achieve her goals.” – Sally Ride

 

5 Things I’m Learning From My Autoimmune Disease

Last week marked the 6-year anniversary of the day I left my teaching career. I still miss it. But I like to think that I’m still teaching – just not in a traditional classroom – but through my writing and in all my interactions with my son. And I’m still learning. In fact, living with my autoimmune disease has taught me some surprising, unexpected lessons. Here are 5 Things I’m Learning From My Autoimmune Disease.

  1. Small pills aren’t always easier to swallow.  I take a lot of pills each day; both prescription medications to try and control my body’s inflammation as well as over-the-counter supplements. Pills come in different sizes. Some are taken with food. Some without. Some are taken every day, at certain times of the day. But there’s one medication I take only once a week. It’s a small pill; probably the smallest pill I swallow. But each Saturday night, I have to take 10 of these little pills. And after a while, those 10 small pills feel more like 10 giant multivitamins.
  2. Being a chronic patient improves my vocabulary and spelling skills.  Since becoming ill, I’ve learned about different “-ists” – gastroenterologist, urologist, neurologist, ophthalmologist, nephrologist, rheumatologist. I’ve also been subjected to different   “-scopies” – endoscopy, cystoscopy. Many were words I had never heard of before. Some were words I had no idea how to pronounce (endoscopy). And some, I still don’t spell correctly on the first try (ophthalmologist). 
  3. I’m willing to have my belly button resemble a volcano.  When I was newly diagnosed and desperately trying to hold onto my life and my teaching career, I tried a variety of things on the chance they might help. I bought compression stockings. Didn’t help. I propped my legs up with several pillows every time I sat on the couch or reclined in bed. Also didn’t help. And me, the person who doesn’t like needles, who always looks away when having blood drawn, saw an acupuncturist. I paid her $100 per visit so she would poke me with ultra-thin needles. Occasionally, she also burned Moxa, and once placed it inside my belly button until it looked like a mini-volcano was erupting on my body.  And it didn’t help my pain.
  4. A blood clot will seem like an attractive alternative.  My illness began on a Sunday morning when I woke up with an incredibly swollen left calf. I couldn’t stand, and once in the ER, all the symptoms (redness, swelling, pain in my calf) suggested a blood clot. I believed that my swollen leg would somehow be popped like a balloon until it was deflated and I was back to normal. It wasn’t a blood clot, and it didn’t return to normal. In fact, while in the ER my calf became more red, more swollen, and more sensitive to touch. Doctors didn’t know why. But a blood clot would have been so much easier. Something that was identifiable, treatable. Something that was temporary. (I was treated for cellulitis, and a year later officially diagnosed with my autoimmune disease).  
  5. An invisible disability is like the wind.  Invisible forces are powerful. You never see wind; wind is invisible. But you see and feel the effects of wind – wind chimes tinkling, kites soaring, leaves rustling. My invisible disability has the same strength as gale-force winds. It made it necessary for me to retire from my teaching career. It qualified me for a disabled parking placard, though I don’t rely on an assisted walking device and appear to be “fine.”