Some years on New Year’s Eve my parents would have friends over. They would go to the hockey game (the Red Wings ALWAYS play on New Year’s Eve) and then they’d party. As I got older sometimes I even got to go to the game, but mostly the adults went, leaving us with a sitter. Upon their return, they would put us to bed upstairs and we could always hear the drinking adults downstairs laughing and talking…getting louder as the night wore on, until eventually we fell asleep.

But when I was much younger, little enough to still be sleeping with a stuffed animal or blanket, I remember my parents taking my brother and I to our grandparents home – a good hour or two away from where we lived. We’d spend the weekend with my grandmother and grandfather.

These weekends were always a bit special, and I can trace just about everything I love and adore back to those special two days in a row in Lexington, Michigan.

My grandfather would take me out to his garden, and show me his cucumbers and tomatoes. Which somehow became the best pickles I’ve ever eaten and the best tomato sandwiches ever made.

My grandmother would read and eat her hard candy and open gifts. Gifts my parents would pack but also gifts we grandkids would make throughout the weekend. You see, her birthday was December 31st. Which meant not only did we get to celebrate a New Year but also a birthday. If I found a wrapper in the trash? I’d color on it and it would become a birthday gift for my grandmother. If we found a pretty rock outside on our walk down to the lake? Yup…gift for grandma.

Just before midnight every New Year’s Eve my grandfather would get out some orange juice in fancy glasses and we’d get ready to toast grandma and the New Year. I also remember her blowing out a single candle on a single piece of cheesecake she made herself. My grandmother’s cheesecake was amazing, so I’ll give her a pass on making her own cake on her birthday. And of course none of us have been able to duplicate it…no matter how hard we’ve tried.

Then, at night, I’d sit on her bed with my cousin and watch her take off her clothing very carefully. And I would watch her put on her pj’s very carefully. I can distinctly remember her always asking for help with her necklace. As a child I just assumed it was so special and precious she needed help taking it off so it could go in that special jewelry box she had on her dresser. The one she would sometimes let me open and I would marvel at the jewels and trinkets inside. Many times I would be poking through that jewelry box while my grandfather removed the necklace around her neck.

I must have seen this ritual at few dozen times as a child. And I always wondered what was so special about that necklace.

It wasn’t until after her death I realized what was going on. Like me, my grandmother had horrible pain from an auto-immune disorder. Her’s was rheumatoid arthritis. Yes, I have it along with my Lupus but as her life went on she became crippled from the disorder. She had trouble unclasping her bra. Taking off her clothes. And that’s why she would take her time getting undressed all those nights on her birthday. As a child it all seemed like some elaborate game of dressing and undressing.

And my grandfather would always help her take off that very precious necklace, not because of its significance, but because of the pain she felt just trying to unclasp the hooks.

Or was it both?

I still can see those orange juice glasses toasting my grandmother and the new year. I can hear the clink as we said Happy Birthday and Happy New Year all at once, chaotically and with as much excitement as any kids allowed to stay up late could do.

And now as I hold that precious locket attached to that necklace I think I know better. Or at least I’d like to think I’ve romanticized my grandfather helping her take off that locket, and the many years of toasts.

My Dad tells stories that are typical of that era. Of my grandmother raising five kids while my grandfather worked, of course, for the auto industry in Detroit. My Dad talks about his great  grandparents in the home cooking and smacking him with a frying pan. And then he mentions how different his father treats his grandchildren, as opposed to how he treated his own children. There are tales of grandma sending kids to get grandpa from the local watering hole…and things I just can’t fathom from the sweet man I knew who always bought me jewelry with my birthstone and made sure my basketball team had chocolates before every game.

So in my young mind, my grandfather helping my grandmother remove her locket every night was an act of sweetness, not of necessity.

Their’s was the era of separate bedrooms, where I cuddled with my grandmother and she sang me songs to sleep, while I could hear my grandfather’s radio coming from his room. Always listening to a baseball game or the news. And when we weren’t in bed, they still shared separate interests as my grandmother would string her gum wrappers together to make me a necklace or attempt to knit or crochet. I can’t imagine how hard that must have been for her, given the pain I now know she had and I certainly know how it feels. My grandfather would remain in his room listening to that radio..always the radio…or cooking for us. I always wanted my favorite, Czernina, and I can remember smelling it simmer all day as my grandmother read tabloids or used her crippled hands to make some magical bracelet or crown for my head.

But I will never forget that nightly ritual…watching my grandfather carefully remove that locket from her neck. Kissing her cheek goodnight. Never her lips. Kissing her cheek goodnight and then retiring to his radio and single bed in the room around the corner from hers.

Years after my grandmother died I remember my other grandfather, my Mom’s Dad, attempt to get my grandpa to join him on one of his adventures. It was a cruise or a senior’s excursion of some sort, and my grandfather would refuse. Waving his hand he’d say ‘no…no….I might have done that with Helen but no, now I just want to watch the news and go to bed.’

And so it went, and continues to go, with my grandfather never having wanted to do much after my grandmother died. He would come to my brother and I’s games and shower us with affection…but that’s where it ended.

He told me he was just holding on until my high school graduation, then he would be joining my grandmother. Then he said he was just holding on for my brother’s graduation. My cousin’s. My wedding. My bother’s college graduation. My cousin’s. Then he said he was just waiting for my son to be born. We named him after his father, my great-grandfather. And for this he was appreciative and then typically told us maybe he gave us the wrong spelling.

Then he was only holding on for my daughter to be born. And when she arrived, early, we gave her a Polish nickname that meant ‘Helen’ and his silence was all I needed to know how much it meant.

So every New Years this is where my mind wanders. To my grandmother. Her birthday. That locket. The one I now carry with me at all times because it was what I was given upon her death. The one I watched my grandfather remove every night I ever stayed in their home, or they stayed in ours. The one my husband held to take this photo, and I couldn’t help but notice his wedding ring and her heart of gold.

Happy New Year.

It is, again, the wee hours of the morning and my mind and medication have me awake.

Since I have the ear of so many of you who suffer from a chronic illness, I felt it time we talk about that thing no one ever wants to talk about when it comes to chronic illness: living daily as someone you love suffers.

Living. 

It’s all very taboo to talk about this, although I’m not sure why. Probably because it’s so intimate. Because it’s so personal. But let there be no mistake: chronic illness will change everything.

But just like everything else, it’s how you handle that change that makes all the difference in the world.

(photo by Megan Hook Photography)

I am thankful my partner is my best friend and I can talk to him about what ails me and what sustains me. He still rolls his eyes in all the right places and doesn’t hold back when I need to be kept in check. Something a good partner will continue to do when you are laying in a hospital bed, your own bed, or just at home bitching and moaning about taking your pills and injections. You don’t get off the hook because you are sick, in fact, you might get that eye roll a tiny bit more often because he knows damn well you know better than to be pulling whatever crap you are trying to pull as staying healthy is what is most important.

I am thankful he is patient and kind, even when my steroids make me otherwise. ( I type that with one hand as I open a pill bottle with another, knowing that I need to keep this mood in check before the rest of the family wakes up and comes downstairs. This way they don’t find me in a puddle of tears and tissues OR scowling and banging hard on the keys of this poor, beat up laptop…weary from having words shoved in and out of it as my emotions tug and push and pull. )

But I am forever  in love with this man who has put myself and his family first as we battle this long-term war together. Having him has made all the difference. 

As the tears fall on my keyboard I am letting go of my worry about the future, about our time together, about just how many more test results or lab work ups or doctor sit-downs we can take.

I have no fear. 

He is by my side through better and worse and that makes all the difference. I will never have to do this alone, and I will never have to face this without holding his hand. Or hearing his laugh. Or giggling as I lay with an IV in my arm while he sweet talks the nurses into bringing me my drugs early.

Don’t let your disease or disorder fool you. It WILL try you and your relationship in ways you never envisioned when you heard that first diagnosis and muttered ‘pfft, we can do this.’ Time ticks slowly as you wage war, and wears you down. What I wouldn’t give to have the last 18 months back to be lived as a healthy person, just as thankful for those by her side. Or to know then what I know now, so I could prepare.

But when those dark days come, know they are only temporary…even if temporary means months. Know that they will pass…even if passing could means years. Know you will come out the other side stronger, smarter, and with a much bigger appreciation for the person who was your primary caregiver, your cheerleader, your biggest fan, and your biggest worrier and warrior.

I wish you all such a partner as you wage your war, because I know I am one of the lucky ones. And if I can find room somewhere between our son and our daughter in our big ‘ol bed, I’m off to lay my head on his chest and soothe the fight in my body for just a bit longer with his heartbeat. Only he has that power…because I gave it to him long ago and not once has he wavered, and not once have I dreamed of taking it away.

Ok, maybe only a few times when he insisted he push me a bit too fast in the wheelchair just to see if we could go downhill at TOP SPEED or his repeated attempts to show my ass to the world out the back of my hospital gown.

I love you, Aaron. 

If it’s any consolation they should drop my steroids back down next week and if you are lucky I might not be so marshmallowy. But don’t get your hopes up.

Smooch