35 Years

Some people long for a life that is simple and planned
Tied with a ribbon
Some people won't sail the sea 'cause they're safer on land
To follow what's written
But I'd follow you to the great unknown
Off to a world we call our own

- Tightrope from “The Greatest Showman”

35 years. Wow. That’s the age of a full-grown adult. A lot can happen in 35 years. A lot DID happen in 35 years. 

35 years ago, I married my best friend. I know. That’s so cliché. Everybody says that. For us, it’s really true. I recently found a pack of letters from our engagement. I’ll tell you this: If somebody would marry me after receiving one of those letters, it’s a miracle. Boy, was I whiny and dramatic!

Nevertheless, we married. We had a blast at our wedding. I moved to Milwaukee and we started our life. Along the way, a lot happened. 

Here’s a list, in no particular order, of just some of our life events:

Set mousetraps.

Had babies.

Survived cancer.

Survived cancer again.

Had more babies.

Moved my parents in with us.

Sent kids to school.

Bought a house.

Sold a house. 

Bought another house.

Sold another house.

Got a job.

Parented a disabled child.

Traveled…a lot.

Sat in grandstands for sports.

Sat in theaters for concerts.

Got promoted.

Changed jobs.

Held our son’s hand while he passed away.

Held my Dad’s hand while he passed away.

Drove carpool.

Cried through graduations.

Laughed at mishaps.

Argued over small things.

Yelled at the kids.

Yelled at each other.

Waved goodbye as our kids moved across the country.

Filled our basement with crap.

Cleaned the basement.

Gained weight.

Lost weight.

Gained weight again.

Sat through 150 recitals.

Quit jobs.

Lost parents.

Made new friends.

Reconnected with old friends.

If you asked me what the secret to a long marriage is, I guess I’d tell you it’s what’s written inside my original wedding ring – love and respect. Love when someone needs you and you feel helpless. Love when you run out of things to talk about because what haven’t you covered in 35 years of dinner table conversations? Love, when you see their best qualities reflected in your children. 

Respect because you know that this person is willing to do whatever is possible to put your relationship first…forever. Respect because sometimes you can’t muster up the 50/50 effort and you need them to be the 80 or 90%. Respect because even when you disagree, you try really hard to understand each other’s viewpoint just because it matters. 

Life is so much more than a Hallmark movie. It’s boring and glorious and messy and hilarious and tedious and infuriating and terrifying and heartbreaking and puzzling and ugly and so very beautiful. It’s the richer and the poorer. It’s the sickness and the health, but I’ll be honest, the sickness is what throws you for a loop and proves your mettle. But, like actual metal, it strengthens you. And it doesn’t have to be sickness. It can be parenting, financial struggles, job loss, differing opinions, anxiety, stress….it all adds up and challenges every part of you. But if you believe in your relationship and trust it, it’s SO worthwhile.

Look, I’ll be honest – I got lucky. I got VERY lucky. Somehow, this patient, kind, smart, unselfish human chose me. If that ever happens to you, don’t overthink it. Jump in. I mean, definitely talk about all of it – the goals, the expectations, the hopes, the dreams, the fears – but then LEAP.

Happy 35th, Tom. ILY, Forever. XXOO

The Struggle Bus is Real

I’ve been struggling lately as Mom’s caregiver. (Full disclosure, I’m not REALLY her caregiver. I see her weekdays only, usually less than an hour.) I’ve been impatient, frustrated, petulant…angry. She’s diminishing, before my very eyes. There seems to be less of her than before. But it’s not just her stature, it’s her mind. She used to be sharp as a tack. Now, she seems confused, which irritates me and also makes me feel bad. 

She can’t help it. Her body is failing her, much like her vision already did. 

You know how they talk about the circle of life? She’s heading back down the other way. As I’ve explained to people, she’s a version of 11 year-old me. I didn’t like 11 year-old me. I was self-absorbed and constantly wishing that I’d be diagnosed with something so that everyone would pay attention to me. VERY immature. Mom’s a nicer version of that. I’m finding it hard to be a mother to my mother. I’m not very good at it.

She complains of dizziness and lightheadedness. So I take her to the doctor. They poke, they prod, they question, they test. Then they say they can do no more and want to send her to the emergency room. Suddenly, she perks up and says: “Oh gosh, no. That seems like too much.” If I felt that it would be a worthwhile trip, I’d do it in a heartbeat. But I know we’ll spend hours with more testing and poking and prodding…to no avail. 

I don’t NOT believe her complaints. It’s just that I think that they’re vague and borne of boredom and isolation, two things she can solve but wishes not to. She gets overwhelmed by “plans.” So then the plans are canceled and she sits and thinks about how shitty she feels. It's a vicious circle.

I bring her audiobooks which she ignores…for weeks. I return the books and then, two days later, she says, as if I’ve long denied her: “There is something I’d like. Can you get me a book to listen to?” I quietly say “sure” and then hang up the phone and SCREAM at it. It’s a rage I haven’t felt in years…against my elderly mother. How cruel am I? Very, apparently.

What I should do is listen patiently to her and empathize. What I do instead is tell her that I’m concerned because if she can’t live without full-time help, we’ll have to move her to a nursing home. That scares her. I didn’t mean to do that, but honestly, it’s true. 

We get a letter saying that four falls is too many and she has to sign a contract saying that she’ll keep her walker by her side more often…which she already does. 

We’re in this precarious place. It’s not really living. It’s applying band-aids to the gushing wound of aging. 

I try to remind myself to be gentler, kinder…but I can never seem to get there. I have friends who would do anything to be with their mothers again, and here I am, complaining about mine. 

When I get to be 87, I’ll surely reap what I sow and then my regrets will be oh, so bitter. 

Be Not Afraid

If you pass through raging waters in the sea, you shall not drown
If you walk amid the burning flames, you shall not be harmed
If you stand before the power of hell and death is at your side, know that
I am with you through it all

Before Tom and I first became pregnant, we talked a lot about having a baby. We talked about the money. We talked about who would care for the child while we worked. We talked about how wonderful it would be to become parents. What we never talked about was what we would do if the worst thing happened. It never occurred to us. I did hear about bad things happening – in pregnancy or life – but not to us. When your pregnancy is going along swimmingly, you have this blissful ignorance that you’re beyond the reach of grief and tragedy. You have to remember, this was before the internet. Anything we needed to know about pregnancy was only available in books or by asking friends, family and physicians. 

When our first child, Andrew, was born severely developmentally disabled, I remembered thinking: “This is a nightmare. I’m living every parent’s nightmare.” (For those who haven't known me very long, you can read Andrew’s story here. If you want to see photos of Andrew through the years, you can watch this video.) When I look back on that time, 32 years ago, I was so young and so naive. I had so little life experience to put this tragedy in perspective.  Honestly, I’m not even sure I could have put it in perspective. How do you wrap your head around the fact that a perfectly normal pregnancy resulted in a child who was profoundly disabled? 

(Interesting side note: I was recently told by a doctor, that if that pregnancy had happened today, physicians likely would have seen, via ultrasound, the Vesa Previa that caused Andrew’s problems. In other words, they could have prevented everything that went wrong. But if that happened, I’m not sure we would have had our second son Dan and that seems unfathomable today.)

I remember being sad…and sometimes angry. I will admit, I got REALLY angry. I remember going to Mayfair Mall and seeing young women, a LOT younger than me, with healthy children. I remember asking God: “Why do THEY get to be parents when they are still children themselves?” But you quickly realize that anger toward something unfixable is wasted energy. In any case, along with the grief that came from knowing that our child was so horribly disabled, came a strange sense of peace. Perhaps it was simply resignation. 

Yes, I was sad and angry, but I was never afraid. I’m not sure why. One reason might be because I was young and pretty unaware. I had no idea the depth of this calamity. I guess I wasn’t afraid because family surrounded us and enveloped us in love. I wasn’t afraid because the staff at St. Joe’s Hospital did everything to walk us through the nightmare in a gentle, caring way. I also wasn’t afraid because I had Tom. I wasn’t alone. We were a team and we were inseparable. 

As we approach our 35^thwedding anniversary, I think back to momentous events in our life and realize that I made it through the bad parts because I was the luckiest girl in the world. I made it through because my husband became my rock when I was a pile of mush. When I was weak, he was strong. THAT’S how I made it through. That is why today, when I go to weddings and the vows are being recited, I always wish I could shout out: “PAY ATTENTION TO THE SICKNESS PART! SHIT HAPPENS. MAKE SURE YOU’RE THERE FOR EACH OTHER DURING THE WORST.” Of course, I never do. But I think it and I wish and pray that the couple will love each other no matter what. 

Nevertheless, Andrew is forever a part of our family’s story. I know that religious people have told us: “God chose you to be Andrew’s parents.” I don’t know if that’s really true. (Can you tell I’m having a bit of a faith crisis lately?) I feel like Andrew did more for us than we did for him. Perhaps I appreciated parenthood a lot more because of him. Perhaps I understood a little more about the fragility of life because of him. Perhaps because of the fact that, in his quiet, gentle way, he touched so many lives, I received a broader understanding of how all of our lives are intertwined. For that, I’m very, very grateful. 

Now that I’ve matured, I’ve unfortunately seen tragedies. I’ve known parents who have lost their kids to accidents or suicide. I’ve seen families live through the horror of cancer and other illnesses. Who’s to say which tragedy is the worst? Ours was just one story among many.

32 years ago, on November 18, 1986, our first child was born. It was a tragedy. But tucked inside that tragedy was beauty that is born out of grief and love. Happy birthday, Andrew. We love you.