My One Regret

I really have very few regrets in life. I'm happy where I am and quite content with the choices I've made during my revolutions around the sun. Life is good. 

However, there is one thing I wish I had done differently. 

Can you guess what it is?

(I bet not.)

I wish I had listened to my parents when they told me not to slouch. 

I'm being serious, people. I have always been a Type-A, check off the list, obedient person. I obeyed my parents rules. I listened to their advice and let them shape my personality in hundreds of ways. WHY DIDN'T I LISTEN when they told me to sit up straight?!?!

My dad used to threaten to strap a board to my back. I would have hated him so much if he had done so, but the older me thinks maybe he should have gone ahead and done it anyway. 

One's spine is one's powerhouse. Our backbones quite literally keeps us standing and are home to our spinal cords, the highways of our nervous systems. The spine is made of 33 vertebrae linked together in a flexible chain, perfected over millions of years of evolution. It is a complex, beautiful piece of art.

The human spine naturally has a lovely S-shaped curve when viewed from the side. Unless you're a slouch. Then your spine, or more specifically... my spine, is shaped more like a C. All of that slouchy pressure puts undue stress on the lumbar region of my spine. As a result of 30 or so years of that pressure, I have a lot of pain in my low back. In the Winter of 2014, at the tender age of 32, my doctor told me I have chronic back pain, a slightly compressed disc, and early signs of arthritis. I also experience this really special tension and discomfort in my butt muscles called piriformis syndrome. And let's not talk about my shoulders and their constant tightness. 

With exercise and attempts to improve my posture, things have gotten better for me. Old habits die hard though. I'm still a slouch and I still regret it. 

Don't feel sorry for me. 
Just sit up straight.

Arthritis and The Needs of Humankind

I've seen variety of memes on the Internet that have a picture of a cute kid and the words: "We need a cure!"

It may be referencing cancer, diabetes, or migraines. I've used that same phrase about arthritis. When amazing people are suffering from awful diseases, it seems pretty obvious that they deserve better. They deserve to be well, and they need a cure. 

But you know what, I'm over that way of thinking. Sure, I'd like a cure for my autoimmune thyroid disorder, but I don't deserve one. I'd love a cure for my girl's autoimmune arthritis, but I don't expect one. I don't think she is entitled to a cure just because she happens to be the most incredible, most beautiful, and bravest daughter I ever had. 

I'm not holding out hope for a cure. It's not realistic, and believing in fairy tales is not what I need. Do you know what I really do need? What I think all people need, maybe even more than hope for cures?

 Community. Support. Love. 

Since Emma's diagnosis of Juvenile Arthritis, my family has participated in a yearly arthritis walk put on by the Arthritis Foundation. The walk itself is a big fundraising event, but raising money has never been my priority. My goal is always to have a HUGE team of friends and family walking together. I need people there to show support for my daughter's struggle and to raise awareness of JA. Last year, a fundraiser fell into my lap and I embraced it because the money we earned helped fund programs, camps, and support for a community of arthritis sufferers. It is through the Arthritis Foundation that I have found my community of fellow JA Moms. The support of these women has filled a need in my life, so when I do raise money, it is with that purpose in mind. 

A don't raise money for a cure.  I don't expect cures for any autoimmune diseases in Emma's lifetime. I expect that she will live her entire life with this disease. I suspect medications will improve, as they have already over the years, and she will likely experience many of them. She will have good days and bad days, and she will be braver and stronger than me for the trials that she will have to face. 

Rather than focus on the hope of a cure that may never come, I focus on what I know she can have, what I know she needs: community, support, and love. These will serve as sources of strength to help her through her hard days. 

Hoping for a better future is important, so hope for a cure if you want. For me, recognizing the good that we can do in each other's lives now, today, is the most effective way of making a brighter future for all of us. 

Want to build up my community and share in some support and love? Plan to walk with us, for free, on Saturday, May 14th at 10am in Livermore. Go to Emma's page here: TEAM EMMA & MADELYN, then click the button that says "Join My Team."  

Dear Big Brother

Dear Big Brother,

Your birthday is in a few days. 
 You probably received my card, the one that I wrote my phone number in, as I have done in each unanswered letter for the two years since we last spoke, even though my number has been the same since 2001 and I'm sure you have in memorized.

This is my last photo of you, of us together. It was taken nearly four years ago. I think the last time we spoke was around your birthday two years ago. Then you got a new phone and decided I didn't need to know the new number.

A few things have changed in the past two years.  My kids are growing. Emma recognizes you in pictures, but she doesn't remember you. She knows about mental illness, though. Mental health is a topic we talk about openly, and I think that is a good thing. Liam has never met you. I need to start showing him more pictures of you and telling him stories about his uncle.

Though you have asked your social worker to no longer give Mom and Dad updates, we know you are still living in the same apartment, where Barry and I brought your belongings. We also hear that you are doing well, that you are adjusting to life with mental illness. You just aren't ready to deal with family. I respect that. Family is hard.

I spent the first fifteen years of my life looking up to you. I spent the following fifteen worrying over you, fearing for you, sometimes even fearing you. The last three have been spent missing you. 

I just want you to know that I love you. I want you to be happy, to find joy, and to make this life work for you. I want the best for you, even if that means that life has to continue on without any contact with me.

So, Happy Birthday, Big Brother.  I hope it is the happiest one yet. I hope, in some corner of your wild, beautiful mind, you know that your family loves you and wants the best for you.

xoxo