Happy 36th Birthday, Andrew!

This is our oldest son, Andrew. Today would have been his 36th birthday. He was our first child. Just like many young adults, we were “kinda” prepared to become parents. I was 26, Tom was 27. We had been married almost three years. We had our own home, good jobs, baby clothes, a dog-eared copy of “What to Expect When You’re Expecting,” (this was pre-internet) a nursery full of baby furniture and families that were very excited for us. My pregnancy was unremarkable. But nobody is ever prepared to become the parents of a severely developmentally disabled child. 

You know that part in the wedding vows where they ask the couple if they will be there for each other in sickness and in health? Usually, people think this refers to the couple themselves, and often it does. But sometimes it means the health of your parents or siblings or...children. And, whoa, we were completely blindsided by the birth and tragedy of our first child. 

Thinking back, the fact that our marriage survived is nothing short of a miracle. Out of a soul-crushing event came the realization that our relationship was rock solid and built to last. We’ve been married nearly 39 years and I’m constantly reassured by that fact which is so important. 

But this post is about Andrew, not us. He was a beautiful child that was only with us for 20 years. Our lives, and the lives of our other children, are better for having known him. Being Andrew’s mom was the honor of my life and I wouldn’t change anything that happened. The older you get, you realize that your journey, as bumpy as it is, forms you into the human being you are today. Thank you, Andrew, for being part of our story and thank you for watching over us and your siblings every single day. We love you forever. 

Note: If you've never heard Andrew's story, you can read about it here or here and you can watch this video featuring music performed by Andrew's brother and sister: 

Patience, Perseverance and Acceptance

Every year I write something for my oldest son’s birthday. Today, November 18^th, Andrew would have been 34 years old. Trust me when I say that I’ve written everything possible. I’ve written this and this and this and you can watch this. And my beautiful daughter has written these. 

 

This year, I want to talk about the limits of medicine and how, despite our many advances in healthcare and obstetrics, sh*t still happens. Somehow, in this year of a major worldwide healthcare crisis, this seems relevant.

 

A couple weeks before Andrew was born, a friend’s sister had a stillbirth. I remember thinking she must have done something wrong or have had less than great medical care. Neither was true. I was 26 years old and hadn’t yet experienced a lifetime of understanding that, sometimes, the worst can happen to the best people – DESPITE doing everything right and getting the best care possible. 

 

If you know Andrew’s story, you know that my pregnancy was “unremarkable.” I was very healthy and so was he. In 1986, you didn’t have ultrasounds unless you had a high-risk pregnancy, which I didn’t. (I will tell you that had they done an ultrasound before Andrew was born, they might have seen the “vesa previa” that ruptured when labor started, thereby saving his life. But it truly wasn’t called for.) 

 

Still, we can’t rewrite history. We can only learn from it. What I know, 34 years later, is that being Andrew’s mom was something that changed me and my family forever. Even though they weren’t born, it changed my younger children. To this day, they have a more mature and compassionate view of life than some of their peers. I also know that I wouldn’t trade the lessons we learned or the love and grief that we experienced for anything in the world. It’s part of our story, forever etched on our hearts. 

 

But back to the medicine. I remember after Andrew was born, it seemed that some of the hospital personnel were holding their breath waiting to see if we were going to pursue a malpractice suit. After all, a baby was permanently brain damaged beyond comprehension. But Tom and I never considered it because, at that time, it wasn't preventable. When you’re in the midst of a crisis like this, you make decisions from your gut. We looked every OB/GYN and Neonatologist and NICU Nurse in the eyes and knew, beyond a shadow of doubt, that they did the best they could and wanted anything but the outcome we had. The best we could do was draw from their experiences and try to give Andrew the best life possible. That’s when the decisions got really hard. I mean gut-wrenching hard. 

 

Looking back, there seemed to be a cloud of grace hanging over us. Family flocked to our side to lift us up and support us. Caregivers made sure to tell us how beautiful Andrew was despite how seriously brain-damaged he was. Even clergy tried their best to give us answers that we wanted to hear. (Hindsight is 20/20 and these were probably the least helpful in the long run, but they tried.) 

 

I guess my point is to say that we are all humans – all of us – moms, dads, doctors, nurses, scientists. We only know what we know. We can be confident and informed and make choices based on lots of research. (And let me stress that this is how decisions SHOULD be made – with LOTS of research.) 

 

But sometimes, we have very little control over situations that, for most people, are very ordinary. Sometimes, extraordinary things happen – bad things – for no damn good reason. I’m pretty sure everyone who has been through a cancer diagnosis can attest to this. You can certainly spend time asking “why me?” But you quickly learn that that does nothing. You still have to move forward. I guess if you’re a person of faith, you can say “everything happens for a reason.” I’ll tell you a secret – I don’t believe that. I don’t. I don’t believe God gives people death or torture or cancer or brain-damaged babies for a “reason.” I’m not letting him off the hook. I’m just saying it’s not that simple. 

 

We Americans like to think we have control over everything in our lives. There’s nothing more humbling and eye-opening than having that control ripped away. We recently got a puppy and any control we had over our empty nest was ceded to this adorable, furry, sometimes infuriating little creature. At first, I fought it and decided I’d train the dog to be PERFECT. I quickly realized that wasn’t going to happen. Once I relaxed and tried to “make the best of the mess,” things got a little better. 

 

Of course, I’m not comparing parenting a severely developmentally disabled child to “parenting” a puppy, but the unexpected chaos and life disruption is not without its similarities. Suffice it to say that life throws you curveballs, some of which are beyond unexpected. In a year in which everything is chaos and disruption and normality has been ripped away, I’m trying to use the lessons that parenting Andrew taught me – patience, perseverance and acceptance. For all of these lessons, I’m eternally grateful. 

The Interpreter of Perceived Slights

 

 

I spend an inordinate amount of time thinking. Someone smarter than I, of which there are many, would have come up with something useful from all this thinking – a Covid vaccine, a cure for world hunger, a way to filter out fake news – but that is not what I do with my thinking time. 

 

No, my friends, what I do is wake up insanely worried and think of all the ways that my feelings are hurt. Yep, total waste of time. I rerun scenarios through my head where a friend didn’t say hello and I assume it’s my fault. I think about how I’m always the one reaching out to a friend and immediately assume my overtures might be unwelcome. And, worst of all, I overthink any and all social media comment interactions and responses. It’s a torturous game, especially at 4:20 am when I can’t turn my brain off. 

 

I have always been a worrier and my guilt response is strong. So strong that I often joke about titling my memoir: “I Feel Bad About Everything.” The only person that feels worse about everything is my Mom, so you know that it’s genetic. 

 

We’re living in an incredibly divisive time. I’m sure I’m not the only one weighing and measuring social media interactions. And, to be honest, I’m doing a bit of judging, which is never good. 

 

I realize that the core of all of this is social media. For all the good that it CAN do – reuniting old friends, allowing friends all around the world to stay easily connected, creating a groundswell of support for good causes – it can also be absolutely the WORST. I have friends, SMART friends who have tried social media and immediately realized that they couldn’t handle it. One of my very best friends said: “I constantly felt like my life fell short of everyone else’s life.” This friend is an amazing person with SO many friends. If she felt like that, imagine how those of us with smaller social circles are feeling. 

 

I know the answer here is less social media. (Yes, I’m addicted. Yes, I should quit. No, I problably won’t.) 

 

So here’s my action plan: 1) Cut back on social media. 2) Assume everyone’s intentions are good. 3) Mind my own damn business. 

 

We’ll see how it goes. 

Why I'm Voting for Joe

Very shortly, many of us will receive our mail-in ballots for the November election. Today, I’m going to do something I’ve never done before. I’m going to tell you why I’m voting for Joe Biden and I’m going to ask and beg and plead for you to do the same. Yes, I am totally violating my own “no politics” rule on social media. (Yes, I’ve posted on social justice issues, but almost never on politics.) 

 

I believe voting is a deeply personal right and privilege, so I’ve never asked someone who they are voting for. I also don’t believe in shaming people for who they vote for. (And please do not do that in the comments. Not cool.) 

 

 For all of my adult life, I’ve voted Republican. I did so until 2016. In 2016, everything changed – the candidates, the landscape, our tolerance for intolerable behavior…the list goes on and on. It was brutal and, unfortunately, it still is. I think you’ll agree that we live in a deeply divided nation. 

 

I’m voting for Joe Biden because I’m hoping for a return to respectability, truth, the common good and decency. I’m hoping that the office of the president will no longer be used as a prop to stage political conventions. I’m hoping that name-calling and middle-of-the-night tweets announcing policy changes will go away. We need structure and accountability. We need an administration that cares about people from all races, backgrounds, sexual orientations, political affiliations, religions (or lack thereof) and income levels. We need someone that knows that diversity – in our boardrooms and our government - is of the utmost importance. We need someone who believes that science is absolutely imperative and if we don’t listen to scientists, our world and our children’s future is in grave danger. 

 

I believe that Joe Biden will stop sending mixed and conflicting messages about the Coronavirus pandemic. He will gather true experts to help us heal, do what’s needed and move on. 

 

I’m hoping that we will once again have someone who is a president for ALL the people, not just those that attend rallies and deify him or her. We need someone that will reach across the aisle and bring our elected leaders together to stop lobbing insults and start creating legislation for all of us. 

 

I also think the fact that Joe chose, as a running mate, a woman of color is incredibly important. That sets a groundbreaking precedent and example for young girls who dream of being leaders. Shouldn’t our government look more like our country does? 

 

Is Joe Biden a perfect candidate? No. NOBODY IS. But I feel strongly that he’s the type of person that would sit down with someone and actually LISTEN to their opinions, even if they disagree with him. That’s what we need more of than anything right now. 

 

Oh and if you’ve been getting those postcards that say that he and Kamala Harris are socialists, that’s a lie. It’s NOT true. He’s also not going to defund the police or take your guns away. He’s not. 

 

Look, I’m WAY out over my skis here. So far out, I may regret this and end up being the social media version of the guy in the Wide World of Sports intro. (Young kids, you’ll have to look that up.) In my everyday life, I avoid conflict at all costs. Maybe it doesn’t seem like it here, but I’m incredibly sensitive to criticism and spend way too many late nights worrying about social media interactions. 

 

But there’s SO much at stake here. Our country needs healing, and I think a Joe Biden/Kamala Harris  administration can do that…or at least start. Thanks for reading. Please be kind to each other. 

Pandemic Spleen Vent

I’m mad….and I’m sad. I’m frustrated…and I’m confused. As difficult as I thought this pandemic would be, I had no idea that the really hard part, for me, would be right now when we could safely leave our homes and are merely asked to wear face masks when we are in public spaces with other people. Shouldn’t this be easier? I long for that time, months ago, when we all couldn’t wait to freely go outside. Now we can, mostly, but why am I struggling? 

If I’m honest with myself, I feel like a bratty younger sister. I’m mad at people for not doing their part or not following the rules, even though the rules are mostly guidelines which most people are barely following. 

To me, the guidelines seem pretty clear: Social distance (six feet) from those with whom are not in your household. Wear a mask when you enter any indoor spaces other than your home. Wear a mask outdoors when you’ll be within six feet of those not from your household. No hugging. Wash your hands.

Yet every day, I open up social media and I see friends and kids of friends with their arms around people not from their household. Or I see friends at a wedding. Or I see families and friends on vacation. Everyone hugging and hanging out close and sharing it all on social media. I need to stop looking because it makes me angry. I can’t help myself. If I'm honest, I'm jealous. I crave that kind of companionship but, other than my Mom, I don't have family in town.

It feels like everyone’s been given a different set of guidelines – like some people were told “go ahead and hang out with all your friends, as long as you’re outside.” Or "You'll be fine. Even if you get the virus, it's no big deal." Nobody’s perfect, but it also seems like nobody’s making an effort. 

It also feels like people just grew tired and bored. As if, in their minds, they’re saying: “This is just taking too long. I’m tired of dealing with this.” 

I completely understand that parents would REALLY like it if their kids could go back to school. But how safe is it? Every child comes from a different household. I’m frightened for the kids and especially for the teachers and staff. And some people don’t want the kids to have to wear masks. Further confusion. Look, I haven't sent my kids to school in a LONG time and I've never sent kids to school during a pandemic. It's got to be an excruciating decision. I also understand that working parents absolutely need some time and space to focus on their jobs. I'm not downplaying that at all. I fully support parents' wanting to get back to some sense of normalcy. But it currently feels like we're in a room in which everyone is shouting at each other and nobody is listening. Everyone feels they are right or they have the right...to do what they want...with no regard for others. 

What makes me the saddest is that I had high hopes that our dealing with this virus would be the moment that divided America came together to do our best and stop the spread of this vicious disease. (It is NOT just the flu.) And at first, that seemed possible. And then people started demonstrating for restrictions to be lifted…and they were. Yet the moment they were lifted, it seemed like everyone thought it was all over. In some areas, there’s complete denial that we are still in a global pandemic. 

I’m not a scientist, but we didn't shut down the country on a whim. Cases are spiking. EVERYONE’S actions have a domino effect. This is especially true because COVID can be spread by asymptomatic people. So, it’s a source of great frustration that people can’t be bothered to do the very least (wear a mask) in an effort to save the health and/or lives of those most vulnerable. How selfish are we?! 

I’m not going to complain about my own situation. I have a more than comfortable home and nobody in our household has lost their job. I’ll do this for the long haul if it’ll help others. 

But it’s incredibly hard to do this for the long haul when so many people don’t seem to care or be willing to do their part. 

I’m really struggling right now. I haven’t seen my kids in nearly seven months and it’s weighing heavily on me. I worry about them every single day even though I know that they are doing everything in their power to stay safe. My Mom’s mental health is barely hanging on by a thread. She gets more confused by the day. The longer this goes on, the more she slips away. 

Can’t we all just come together and just stop this thing in its tracks? If we all stepped outside our personal bubbles and thought of other people, it could make a huge difference.

Also, may I suggest that everyone think before they post a photo on social media. What you do and what you're seen doing influences other people. Let's be the leaders we need right now.

Sorry. Rant over. 

Helpless

I no longer pray. I beg, I plead, I implore.

I ask for relief for my friend and a friend’s mom - the two people I check on every day.

I envision their lungs filling with clean air, dispelling the Covid out. 

I feel somewhat hypocritical with my missives, but I promised…because it’s all I can offer. 

As this plague rages on, I’m finding myself questioning my faith. 

And yet I do exactly what I promise – I pray…and I beg, plead and implore.

I wish I could be that person, certain in resolution and cure and reason. 

Instead I think:  What kind of god would do this to its people? What kind of god separates people from their loved ones who are dying?

I dismiss suggestions that Mother Nature needed a break, that we needed time together, that we needed to appreciate more. 

I find it impossible to believe that a virus has a lesson to teach us all. 

Thinking about the future is too scary for me. My regular M.O. is worst case scenario, assuming if I think it, it won’t happen. 

But what if it does?

I place myself in a bubble of ignorance. Unlike many, I do not watch the news. I know it will find me when I need it. 

I realize that this bubble is filled with privilege. I have food. I have health. I do not have to work on the front lines. 

I try to remind myself daily that so many are denied that privilege. 

I think about those on the front lines – the doctors, nurses, first responders, retail workers, sanitation workers…the people that don’t get to “stay safe at home.” 

And then I think about the other front lines – the families of those suffering, not able to be with their loved ones or able to be comforted.

It becomes clear that we Americans were arrogant in our belief that we could control and prevent everything. 

Perhaps that is the lesson to be learned. There are no borders. We can’t keep anything or anyone out, no much how much it or they are feared. 

In the meantime, I’ll keep begging and pleading and imploring…and hoping. 

The Ending of Friendships

I've been thinking a lot about friendship lately.

Lifetime friends, mostly.

I have a few. I feel blessed. But there are a few that, long ago, were close to me and no longer are. In fact two were in my wedding party. Last week, I sent an email to wish one of them happy birthday and my email was returned because the email address was disabled. Honestly, it was kind a kick in the gut. I knew our friendship had fallen away but this seemed like a death knell.

I blame myself. (Full disclosure, I blame myself for almost everything.) I wasn't a great friend during the year that I was engaged. I guess that stuck with her...forever. I'm sad, because I like her as a person. She's smart and interesting. I did see her since our wedding and spent a lovely day reconnecting with her and her family in California. I can't help but feel really, really hurt. Part of me wants to reach out and apologize and say: "Please take me back. I promise I've improved."

But part of me is also pissed. Because as a wise person once said: "We are never as bad as the worst thing we've ever done." I was a complete moron when I was a young adult. But I wasn't the only complete moron young adult. And perhaps I should think that maybe this person isn't as great of a friend as I thought she was. Why can't she accept my flaws?

The answer is that as you get older, through circumstance or choice, you may add and subtract friends from your life. Life gets complicated. You grow out of some friends and grow into some others. Sometimes it's just people that connect with you because of what you're going through at the time.

I think the real problem is that I have a very hard time saying goodbye. I do not like the finality of things. I hate the end of vacations. I hate the end of events. There is something about endings that is really rough on my psyche. Maybe I need to learn to accept endings. Or maybe I need to look forward to new beginnings. I'm honestly not sure.