Memories

Spring Lilacs

Memory is a funny thing. We say this all the time, but when I stop to think about it, it really is. This week is Teacher’s Appreciation Week, so I already had school memories on my mind. But at least twice this week, I have been reminded of walking to school. I walked to school almost my whole life. Not until 6th grade did I even live somewhere that made me eligible to ride the bus. And even then, I often walked with my brother and his friend, and even by myself once they went to high school. I know that I walked in every type of weather. But rainy and snowy days never trigger those memories (at least, not that I remember). But somehow, something in the air these past few beautiful spring days just feels and smells like walking to school. I don’t know why. I live somewhere I never attended school, which has a climate unlike any of the other 8 where I have lived. And yet, some combination of sunshine and spring flowers here has unearthed these memories that are more than 35 years old. How our minds work is fascinating to me. But rather than think too hard about it right now, I’m going to enjoy this beautiful day.

Have You Noticed…

Photo Credit: Quentin Dr

So, I’ve decided that I want to post on some random things that I have observed. These posts could be short or long, deep or light, funny or serious. But I’m going to give them all the category “Have You Noticed” to make them easier to find. I hope you enjoy them.

Wakeful Worries

Photo credit: Ben Blennerhassett

This is likely the first in a series of who knows how many posts. I named it “Wakeful Worries” because it will focus on the linguistic questions that keep this grammarian* up at night.

Around 2:00 a.m. I was thinking about the punchline to a joke my spouse likes to tell. For the joke to work, the jokester asks the mark something like:

”That’ll need a henway. Could you go get me one?”

The ask is designed to inspire the mark to respond: “What’s a henway?”

Answer: “About 4 or 5 pounds.”

Photo credit: Kim Gorga

Obviously, a henway is a made-up object created by fusing hen and weigh. Other versions of this joke use hammerfore, or updoc. But what caught me last night is that the henway version relies on the ability to misinterpret the mark’s words because of the dual meaning of a verbal contraction that I rarely see in print.

The mark is using “what’s” to mean “what is” as in “What is a henway?” while the jokester is relying on the fact that “what’s” in this context can be understood to mean “what does.” We use “what’s” as a contraction of what does all the time: “What’s that mean?” “What’s she want to do?” But the more I thought about it, the more I began to conclude that this is purely a verbal contraction—not one we use in writing.

Setting aside that contractions are generally only used in informal writing to begin with, I’m not sure that I’ve ever seen “what’s” used to mean “what does” written anywhere except dialogue in books. Similarly, in the first person context, we often verbally omit the “d” in “what do you” to the point we have essentially created the new word “whatta” or “whadda” as in: “Whatta ya want?!”

So, now I’m curious. Have you ever seen “what’s” used to mean “what does” in print? Let me know in the comments.

*I dithered about whether to qualify calling myself an “amateur” grammarian because, although I consider myself something of a grammar snoot, I know that there are many grammarians more knowledgeable than I. However, I felt that “amateur” was Inaccurate because I do a considerable amount of writing and editing in my paying profession so that I am, to one degree or another, a professional grammarian. This, I elected to leave it qualified with only the asterisk so I could then qualify it with a small paragraph instead of one word. Bryan Garner is ready to revoke my grammar snoot ID card as I type. Ah well. C’est la vie!

Paying It Forward

Today I made my 135th Kiva loan. I have loaned and reloaned my money in $25 increments so that I have made $3,500 in loans to 344 borrowers in 70 countries. I adore Kiva. I cannot say enough good things about it. So I want to try something new.

Most of you know that later this month is the 6th anniversary of Patrick’s death. Most of you also know that I try to do a fundraiser in his memory around this time, given that the dates of his passing and his birthday are so close together. Some of you know that I have been contemplating creating a non-profit in Patrick’s memory, but I haven’t quite figured out what I want it to do—but I’m getting closer.

In the meantime, for this year, I am asking for donations for Kiva loans to use in their “Health” category, to pay for other people’s medical expenses. You can do this in one of 2 ways:

1) Create or use your own Kiva account, join Patrick’s Peeps (https://www.kiva.org/team/patricks_peeps)and attribute a loan you make to the Team.

2) Make a donation directly to me that I will pool together with all donations received and use solely for loans attributed to Patrick’s Peeps. I have made a separate Patrick’s Peeps Kiva account just for this purpose that you can friend if you have your own account.

For those who are interested, I will provide monthly update posts here so that you can see who we helped and how the loans are doing. As funds are repaid, I will relend those funds to other borrowers. That way, your one-time donation will last for years and help many more people in the future.

If you are interested in making a donation, please email me at patricks.peeps@gmail.com to request my mailing address or Venmo account information. Thank you for helping me remember my son.

Broken

Dear friends, I am broken. I am tired and angry and frustrated, too. But the overwhelming thing I feel is broken. I have watched my country become something almost unrecognizable over the past four years, and it is becoming ever clearer that we may have another four years of this. And I cry. I cry for all the people who have been fighting this fight for longer than I have. I cry because I’m just not strong enough. Because I have reached my limit. And now I’m broken.

I have always wanted to know why people do what they do. I could not understand how people stood so firmly in their prejudices—against blacks, women, LGBTQ+, immigrants. How anyone could profess to love the values and foundations of this country while simultaneously denying others the freedoms and protections its governing documents guaranteed. And while some only passively permitted others to engage in such behaviors, others actively advocated for such things.

And I became fascinated with Germany and the Holocaust. In my naïveté, I believed that people must not have known what was happening. I believed that when we know better, we do better. I was wrong.

I recently listened to a talk given by the Holocaust survivor for whom my daughter was named. It was given a few years before I met her. I had a cassette tape of the speech that I was keeping for my daughter, so she could hear her namesake tell her story in her own words. I had already read the books she had written. I knew the things I was going to hear. The bittersweet sound of her voice, now that she has passed, put me on the verge of tears before she said more than “Thank you.” But hearing her relive her horror. Explain she couldn’t even give us a glimpse of 1/100th of the evil and horror she experienced in the 20 minutes she spoke. Impress upon us that the whole point of putting herself through the misery and emotional drain of retelling her story was to make sure people knew what happened so that in the future, those who remained after she was gone, could make sure it never happened again.

And yet, here we are. Kids in cages sleeping on cold cement without pillows or blankets; inadequate water and unsanitary conditions; denied education, medication, and air conditioning; being molested and sexually assaulted; some deported “home” without their families; dying from intentional neglect. Seeing people show complete disinterest in the suffering of these children or, worse, argue that they “asked for it.” My heart is shattered to see just how many mean people advocating for suffering and death there are—many of whom declare themselves to be “good Christians” and “Pro-life.” They either don’t see their hypocrisy or don’t care. It doesn’t matter if you don’t like someone. They do not deserve torture, neglect, abuse, or inhumane treatment. No one does. Full stop. No exceptions.

I get that others disagree with me. And that’s okay. I have never needed someone to agree with me in order to be their friend. I don’t want to live in an echo chamber. I will boisterously assert the rightness of my opinion, have it challenged, sit with my thoughts later, adopt the contrary position wholeheartedly, and admit I was wrong. That’s how we learn; how we discover if our positions remain valid or need reconsideration. What I adored about my diverse friends was our ability to love and support one another even though we didn’t agree.

Sadly, over the last four years, it feels as though every single aspect of our lives has become political. We can’t even agree to be kind and listen to one another. And although I have worked very hard to maintain my relationships with friends who think differently than I, they have not returned the favor. Only a few have unfriended me, but it has become abundantly clear that I have been hidden or muted or whatever. Direct private messages about things not even remotely political went unread and unanswered. I took time to check out their feeds and see how they were doing, commenting on pictures and memes as appropriate, but they never wrote a single thing on anything I posted.

So the time has come for me to stop. I cannot keep pouring energy into relationships that are not nourishing me. Life is hard. COVID has made it harder. I need to protect my limited resources. But I want to be clear. Disagreement doesn’t wear me out. Debate and policy discussions don’t suck me dry of energy. Ignorance, hate, and indifference, however, they leave me sick. Exhausted. Broken-hearted. Worse, I know these people personally. Have seen the love and humanity in their hearts. Shared some of my hardest and lowest moments with them. Been held up by them. And I will forever be connected to them. And I will always love them. But the time has come to say goodbye. They have shown me that they don’t need my energy; that they don’t want it. So I’m going to stop throwing it away and, instead, use it places that will feed my soul. And one of those places is going to be continuing the word of my daughter’s namesake—making sure people know and remember the Holocaust. It must never, never happen again, and we are far too close for comfort.

Black Lives Matter.

Immigrant Lives Matter.

Trans Lives Matter.

Jewish Lives Matter.

Peaceful Protester Lives Matter.

Accepting That Patrick is Gone

I want to share something with you from my counseling session today. An unexpected blessing that has left me in a beautifully painful but freeing space. I am on the precipice of real change. Real healing. It’s scary, but exciting. My mind is racing a thousand miles an hour on the outside around a calm, quiet center. A hurricane of emotion.

I was talking with her about how ever since I saw the Memorial Day pictures in my memories, I had felt sad and anxious. I said that I was “dreading the emotional slog to September. I know what’s coming, and I can’t stop it.” I talked about having done the 31 Days of Patrick and how that had kept me from reliving his life day-to-day this year, but it hadn’t stopped this part of my grief cycle. She said something to me then that, after the shock of the hit wore off, I realized she had told me last year, and it was one of the reasons for doing the 31 Days of Patrick to begin with: Nothing is coming. It already happened. Patrick’s already gone. He’s gone.

Friends, I can’t tell you how heavy a hit that was. I mean, logically, he had to be gone for me to know it was coming, but for me to be dreading it, it had to be something that could happen—and he couldn’t die again. So that made no sense. She then went further and said, “You can’t lose him any more than you already have. You won’t lose the memories, or the feeling when you hear ‘Happy.’ He’ll always be with you.” And I suddenly realized that that had been my real fear each year. That I would somehow lose him more. That I would lose what I have left.

Just since our talk this morning, I am already feeling less sad today than I have for several days now. Patrick’s not leaving me in September. It’s just an anniversary. He’ll be with me as much then as he is today and tomorrow and every other day. This seems so simple a truth. And yet, accepting it means putting behind every piece of emotional denial I had. It means having to feel every feeling that has been stuffed away. It’s one of those moments when what is in your head suddenly slams down into your heart, and there is no turning back. You can’t unsee it. You can’t unknow it. “Patrick is already gone. He. Is. Gone.” It’s an excruciatingly painful realization. And yet. Simultaneously, there is this huge unburdening. A lightening. A letting go. “I can’t lose him again. It’s not possible. I get to keep everything I have.” There is nothing to fear from any of his anniversaries.

So I find myself in a strange new space. Having all the feels. But it also feels like an amazing breakthrough. And since we don’t hear much good news right now, I just wanted to share it with all of you.

P.S. For those who missed the 31 Days of Patrick, I recreated them as a Shutterfly book for Mother’s Day which you can view here.

In Response to JK Rowling

JK Rowling has taken a stance for quite some time that trans women are not real women. I have always disagreed with her on this point, and continue to do so. To say they are not women is to erase them them, and that is completely unacceptable. Trans women are women. Full stop. In addition, when called out and accurately labeled a TERF (Trans Exclusionary Radical Feminist), Rowling doubled down and proclaimed that “it isn’t hate to speak the truth.” With all due respect to Rowling’s talent in other areas and her entitlement to her own opinion, what she stated isn’t fact—it’s opinion. Just as generations of people have spewed hate as fact (blacks are dumber, gays can’t parent, men are stronger and smarter), she too now seeks to weaponize her opinion by claiming it as truth and then hiding behind that label as a shield. And her claim that this is not hate is not only wrong, but seeks to minimize and, indeed, erase the entire issue; preventing any discussion at all. It is the equivalent of saying “can’t we all get along” or “all lives matter.” This is disingenuous and dangerous.

That said, after reading three of her recent tweets, I found myself struggling because I agreed with one of her smaller tenets: how can we say sex doesn’t exist when we talk about sex discrimination and same-sex marriage and the like? Through discussion, I have found an understanding that I believe addresses her concerns within the context of our current understanding of gender (and similarly race and sexuality).

Historically, we have viewed the world as a series of binaries.: male/female; black/white; gay/straight. These binaries were intended to create a hierarchy for society and define preferential traits, which allowed for significant violence and discrimination to occur by men against women, whites against blacks, and straights against gays. The problem is that these binaries do not accurately describe our world. Gender, race/color, and sexual identity are more fluid and a continuum. Thus, bi-racial people, bi-sexual people, and trans-people have always experienced violence and abuse at the hands of both ends of the “binary” for failing to “pick a side”: But are you black? You’re either gay or straight. Are you a woman who like to dress like a man, or do you think you’re a man?

Our new understanding of the fluidity/continuum of gender, race, and sexual identity prevents classifying people into 1 of 2 (or any other number of) clearly defined categories. But it does not erase the historical facts of violence, abuse, and discrimination caused by our previous use of binary systems, nor does it erase the current repercussions of those systems.

To Rowling’s point that sex must exist or her lived experiences are erased, the lived experiences of women, gays, and blacks are not erased by recognizing that the binary system we ascribed to was wrong. That understanding created issues that are still causing ripples today. So we can talk about the harms and discrimination caused by the previous understanding of sex, race, and gender identity as binary without there actually being something finite and discrete as “male” or “female”, “black or white” or “gay” or “straight” into which everyone must be placed.

As a final thought, I want to address her statement that there can be no “same-sex marriage.” I tend to agree, but only because there has never historically really been only “opposite sex marriage.” Our binary system was built on the illusion that there were only two biological sexes, expressed as XX and XY, when, in fact, we have known for a long time that XXY, XYY, and various other inter-sex genetic combinations exist. We maintained the illusion of opposite-sex marriage, but in truth a trans woman (genetically XY) could legally marry a cis-gendered woman (genetically XX) because they had differing genetic codes And yet, to anyone on the street, they might well have appeared to be a legally married lesbian couple. Thus, even our previous binary system never fully prevented “same-sex” marriage. Fortunately, when we finally opened up marriage to everyone, we removed all gender classifications. Thus, the result was not the creation of two kinds of marriage: opposite-sex and same-sex. Rather, we simply opened up the legal institution of marriage to everyone, and no longer have to consider the parties’ genetic code or genitalia before issuing them a marriage license.

Dear Fellow Whites,

Dear Fellow Whites,

I want to talk to you. Anyone is welcome to read this, but this is directed to you.

Have any of you seen the movie version of John Grisham’s A Time to Kill? There is an incredibly powerful scene at the end where Matthew McConaughey’s character is talking to the all-white jury and asking them to imagine a little girl. Then he describes in horrible detail all the things that happened to the defendant’s daughter. And you, the audience, are sitting there, envisioning it with them. And then he says, “Now imagine that she is white.” There’s this deep collective gasp because you know, you *know* you were envisioning a black girl and you also know that once you imagined she was white, your feelings changed. Did it make you uncomfortable? Did you sit with that, or did you blow it off as a nifty trick of cinema and storytelling? I’m here to tell you that that was no trick. That was our ingrained centuries of racism peeking out. And it is long past time to deal with it.

The first thing I want you to do is to watch the news and, after every story, regardless of the victim’s gender identity, race, religion, reimagine the story so that both the perpetrator and victim are white men. If any of those new scenarios makes you feel differently, stop and ask yourself why. The answer is: all of us have been socialized to value white male bodies over all others. And after generations of both blatant and subtle indoctrination, we have a *lot* of work ahead of us to fix this.

I have always considered myself extremely liberal and progressive. I wasn’t just a person correcting friends from the shadows. I spoke out. I donated money. But I have been remiss. I have failed to realize how exhausting simply existing in our society must be for all melanin-enhanced individuals in this country, let alone excelling and achieving as many of them do. I want to share with you something I learned recently and hope it helps you, too.

Most of you know I have lost a child. My son died just shy of 11 months old from heart failure related to his CHD. Many of you know that my daughter also has a CHD. And although hers is not as complicated or severe as Patrick’s, it is still considered “complex” and will always put her life at additional risk.

Photo Credit: Jon Tyson (@jontyson)

As COVID began to make it’s way into our national consciousness, there were people who called it a hoax. Few took it seriously. However, many of us with CHD kids had to start taking action long before any governmental officials did. Being hyper-aware of the health hazards our kids face, we generally prefer to err on the side of safety. CHD parents were pulling their children from school a week or more before schools were actually closed. We were one of those families.

Because of COVID, for more than 3 1/2 months, I have lived in fear that someone will unknowingly bring this invisible killer near enough to my daughter to kill her, and leave me grieving a second time. Pair this with the recent anniversary of My son’s second open-heart surgery and the hospitalization that ended with him coming home in palliative care, and I am having serious physical and emotional trouble just trying to function.

Now I want you to go back to the news. I want you to imagine that every night—for years—day in, and day out, you see a person that could be your son, daughter, sister, brother, cousin, best friend, father, mother, aunt, uncle, or other loved one being brutalized or murdered. Every. Day. Some of them are even murdered live, on video. And worse, the people killing them are never held accountable, often remaining in positions of power and free to do it again.

In my world, this looks like white people running around town without masks, not washing hands, crowding together on playgrounds or at the beach like it’s any other day. It looks like white politicians telling me that making money is more important than my child’s life. It looks like people telling me to “lighten up.” Or that it’s “just the flu.” News flash! The regular flu can kill my child. In fact, it can kill perfectly healthy one’s, too! But for me, I have to live with the knowledge that general everyday growing up has the potential to kill my child. So, some days, I have such debilitating panic that getting out of bed, taking a shower, and eating are too much for me. Politicians are supposed to care about all of their constituents. They are supposed to make sure we are all taken care of. But the policies they are putting forth are putting myself and my family directly at risk. And I am angry as hell and scared as shit about it.

And in this moment, I got a small taste of American life for African Americans, Latin Americans, and other minorities. And I began to wonder, how do they even function in our world? How are they not completely overcome with grief and anger, every day? Because every day they live in fear that someone is going to bring an invisible virus into their lives and kill them or someone they love. Just looking at us, they can’t tell if we have the virus. Our words cannot reassure them. No test will give them the answer. And even if we don’t show symptoms, they know that we can shed the virus. Thus, they must be hyper-vigilant. And man, that shit is exhausting! Knowing how little I’ve achieved in the last 6 years except figuring out how to start to function again, I am only now comprehending how strong and amazing these people and their communities are that they manage to get up every day and keep going.

And even now that I have finally had a tiny opportunity to experience and understand just a small piece of what they have experienced practically since birth, I am overwhelmed with anger and sadness. Because as much as it has helped me understand, there are still depths to their pain and experiences that I will never know and never feel. Realizing just how many people are living in a world that is actively trying to kill them, it’s no wonder they are tired and angry. Quite honestly, I’m surprised they aren’t more angry. They have waited a long time. Sometimes patiently, sometimes not. They have tried talking to us nicely. They have tried showing us facts and figures. They have used research. They have used story and film. We have video that shows they get killed for no reason and the perpetrators lie about what happened.

Photo credit: frankie cordoba (@byfoul)

We owe them more than lip service. Our country and our successes have been built on their backs and the backs of their ancestors. Our country’s governing documents promise them equal treatment under the law. They don’t have to earn it. They are entitled to it just by living here. It is long past time for us to do something about this. And if begin to feel guilty as you realize just how much they have continued to suffer at our hands even in the last 40 years? Good! Sit in it. Make yourself uncomfortable. Don’t assuage your feelings with a token gesture, either. It’s high time we stand in the trenches with our black and brown brothers and sisters. Our whiteness is a shield, and I expect to see us using it to shield our fellow citizens from continued harm until we make significant and substantial changes to the racist institutions that run this country.

Here’s another exercise for you. If you think our systems are fair and that we live in a post-racial society, I want you to volunteer to trade places with a black person. No? How come? Because regardless of whether our conscious mind will admit it, deep down we know they don’t get what we do. And here’s another news flash: when you have been privileged all your life, equality looks like discrimination. We will have to work harder for some things. But not because others are getting preferential treatment. No. It’s because we won’t be receiving preferential treatment anymore. So save your boohoo stories of blacks “taking your place” at a job or a school. How entitled do you have to be to assume that it was your spot to begin with? You want true equality? Get rid of legacies. If all those spots were opened up and everyone had to compete for them, I can guarantee you there are a lot of schools that would have very different compositions. White women and all minorities have seen white men with money and connections but no brains and no real interest in learning get admitted to highly distinguished institutes of learning that we *all* know would not get admitted if they were actually considered on the basis of their grades. So yeah. It’s gonna suck. But not because we’re being discriminated against; because we no longer get to automatically move to (or at least closer to) the front of the line. We just have to accept that the loss of our privilege is a mandatory requirement for our continued living here and receiving the freedoms this country has to offer.

And if you feel compelled to tell me about your close black friend(s), or you want to explain to me how you’re not racist, don’t bother. I am telling you, here and now: Yes, all whites! We have all perpetuated racism, whether we did so blatantly, passive-aggressively, quietly, or unknowingly. Treating others kindly, following the golden rule, doesn’t earn us a cookie or a gold star. Treating other people as humans, as equals, is required, not extra credit. That is the bare minimum. It is long past time to provide black and brown bodies of all types the things our guarantees: not just a claim to equality, but actually equal opportunity, access, and treatment. And stop looking at it like a gift we are bestowing on them. This is their due. Their right as citizens. We owe it to them. They have been entitled to, but denied, that which the laws have promised them. We are indebted to them!

This ends now. It is way past time. My eyes, my mind, and my heart have all been broken open, and I will no longer allow my country to pretend that this isn’t happening. Stand up and help us move forward, or get out of the way and left behind.

Life Is Precious

Dear friends,

Six years ago, I took Patrick to the ER where he was then transferred by ambulance to Detroit because his oxygen was in the 50s. This was the beginning of his longest and final hospitalization, which ended with us bringing him home on palliative care. Although I have done so much better this year since doing my 31 Days of Patrick, all of the big anniversaries are now on my internal countdown as we head toward September.

As we struggle as a nation with COVID-19 and the over 100,000 lives lost, the loss of socialization and touch, the continued mistreatment and murder of black and brown bodies at the hands of police and the border patrol, the militarization of the police, the gassing and injuring of peaceful protesters to make a point or take a photo op, I want to remind you that life is precious. No one deserves to die. And no one—official or citizen—has the right to endanger the lives of others, whether by misusing force, ignoring science and social distancing measures, or making unreasonable or unlawful orders and demands.

None of us is promised tomorrow. And life feels so precarious to all of us for any number of reasons right now. So please—tell all your friends and family that you love them. Right now. And then, before doing anything else—speaking, acting, typing—take a deep breath. And when you next interact with someone, take no action until you can see the humanity in that person. You don’t have to like them. You don’t have to agree with them. But you can make your point without yelling, spitting, embarrassing, humiliating, threatening, or otherwise dehumanizing the other person. We are all in this together, and we can lift each other up, or suffocate as we all fight each other to be the one on top.

Society only works when we work together. Many of us have lost our jobs—me included. Many of you are risking your lives, whether by taking care of others, making yourselves heard, or demanding justice. Almost every one of us in the US is being asked to make a sacrifice right now. How well we survive—both literally as bodies and figuratively as a country—will be determined by our willingness to give up looking out for #1 in the name of looking out for the least of us. The most important thing we can do right now is see—truly SEE—every single person as someone deserving of life, love, care, and compassion. Don’t talk about “them” or “they.” Don’t demonize with generalizations. Be precise with your words. Discuss. Debate. Protest. Be angry. But stop threatening each other. Stop using violence against unarmed citizens. Remember that every single person is loved by someone else. Every single person has someone who will grieve their loss. No life is unimportant. The old and sick are not disposable in the name of commerce. The young and healthy won’t remain that way forever. Give your workers the benefits you want to receive from your job. Be compassionate. Be caring. Be understanding. Help your neighbors. We can all survive this—all of this—if we work together for change. Change is never easy, but it’s absolutely necessary to our long- and short-term survival.

Learning the Hard Way

I’m a pretty smart person. And not just book smart. I’ve learned a fair amount in my life. I have (un)common sense and know a lot about different social classes, how to blend in and get by. But I am also blessed with a stubbornness for the ages. I can dig in my heels and shall not be moved until I decide it’s time to move. It is this latter trait that means I have had to learn some lessons “the hard way.”

What I mean by “the hard way” is through personal experience rather than by seeing or learning about someone else’s experience and making better choices to avoid what happened to them.

As children, we almost all learn the hard way. Someone tells us not to touch a stove because it’s hot, and the majority of us have to touch the stove to understand what “hot” means. As we get older, when we see someone yank their hand back and stick their finger in their mouth, we know we shouldn’t touch whatever it was because it’s hot. This time, we have learned vicariously through their experience.

As adults, we seek out advice from experts because they have seen how things turn out time and again. We are hoping to learn from their experiences and avoid problematic outcomes. In the scientific community, they can provide research and data to prove they know that they’re talking about. So, when it comes to science and healthcare, I am generally a “follow the rules” and “play the odds” kind of person.

Granted, this doesn’t always work out in my favor. We fell into the 1% of people to have a kid with CHD, and then that even rarer group of people who had multiple kids with CHD. But we’ve beaten the odds in many positive ways, too. Many marriages fall apart after infertility, ART, medically-complicated children, or infant death, and mine has survived all of those things. But, on the whole, when my doctors tell me I need to do something, I do my best to follow their instructions.

And et. We all know that person who ignored their doctor, followed their gut, and was right. George Burns smoked cigars his whole life and lived to 100. My grandmother knew something was wrong and badgered her doctors until they did an angioplasty and discovered her arteries were too clogged to do one, so she had quadruple bypass surgery without ever suffering a heart attack, and she went on to live to 95. And we all know that skinny person that never exercises and eats nothing but candy bars, but has no fat, no diabetes, and flawless skin.

So when my doctor told me I was diabetic, I wasn’t surprised. Annoyed, to be sure, but not surprised. I diligently began taking my meds, releasing weight, and eating marginally better. We got my a1c in line, I began taking certain meds prophylactically, and life was good.

Now, from day 1, they told me I needed to start taking care of my feet. Putting lotion on them, wearing “real” shoes, checking them each night for cracks and whatnot, and recommended that I geta podiatrist. Not. I have been a barefoot child my whole life. My mantra is “naked feet are happy feet.” I have had tough calloused feet for as long as I can remember. I could walk or run on gravel. Hot summer cement didn’t bother me. I took pride when I lost two toenails after a half marathon. I mentally gave my doctors the middle finger and ignored everything they said about my feet. My endocrinologist would test the nerves on the bottom of my feet. There was no reason to add yet another doctor and another co-pay to my already hemorrhaging healthcare budget.

A few days ago, I noticed my right heel was tender when Ziggy licked it. But it was a mind annoyance. I thought maybe his teeth were scratching me a bit as he slathered my heel, and it was no biggie, so I ignored it. Yesterday, I noticed my toenails needed clipping, so I decided I would put lotion on my super dry and scraggly feet. That’s when I found it. A fissure. Fuck. Okay, no biggy. I cleaned it with alcohol (ouch!) and otherwise slathered my feet with lotion. When I checked my feet later, it was lke I had never put lotion on them.

Readers, I sed ultra-moisturizing lotion four times over 8 hours, put socks on overnight, and still barely made progress on the dryness of my heels. I am fighting to prevent additional fissures that I can literally see trying to occur. I am chastened. My doctors knew. They were right. It didn’t matter how my feet had always been. It didn’t matter that my A1c had been great for over a year. I should have been caring for my feet and, instead, I had been abusing them to spite the doctors. And the only person it hurt was me. Once again, my stubbornness got the better of me, and I learned the hard way that my doctors really did know what they were doing. If I am paying for their expertise, shouldn’t I follow it? Yeah, yeah, yeah. I know. I know. And at least I caught it early before I did any real damage. But it was a wake-up call and a good reminder that I don’t always know what’s best for me, and I need to be doing a better job of caring for my body. I may have learned the hard way, but at least I learned. This time.

CHD Awareness

It's February! And among other things, that means Heart Month is here. And today, February 7, starts CHD Awareness Week. I have spoken about this week for at least 5 years now, but there are still large numbers of people who don't know anything about it. So this year, in addition to posting on social media, I wanted to blog a bit. My plan is to post something every day throughout this week and hopefully share some information you may not have known.

What is CHD?

CHD stands for congenital heart defects. Congenital is a fancy way of saying "had it since birth." It is the ultimate pre-existing condition. Science does not yet know exactly what causes it, but it happens in the first 6 weeks of pregnancy, because that is when the heart forms. Thus, by the time you have enough hormone in your body to get a positive pregnancy test, it's a done deal.

Also, CHD is a box that contains numerous different conditions. Although knowing another heart parent or heart child can be helpful, treatments for different conditions can be vastly different. So having fellow heart parents or heart kids that can understand your and your children's experiences is often more helpful.

What Causes CHD?

There appears to be a genetic component, as having a CHD makes your children more likely to have one, and having one child with one makes you more likely to have another child with one. But, in most cases, it appears to be some kind of glitch, and most people only ever have one CHD child. The moms didn't do anything wrong during pregnancy. They haven't caused it to happen by doing or not doing something. It just happens. Only continued funding and research will answer the how and why and bring us closer to figuring out how to stop it.

How Common Is CHD?

Every 1 in 110 children has a CHD. That means you or your child almost certainly knows someone with one. Some of them are "simple" and some are considered "complex." But any and all of them can be devastating and fatal depending on their degree, when they are detected, and any number of other factors. A "simple" VSD (ventricular septal defect) is nothing of the kind when your child goes in for surgery and then suffers a stroke. Some people with HLHS (hypoplastic left heart syndrome) live many years. Some die as infants, tweens, teens, or adults. Some die after their heart transplant fails. There is no standard progression for any of the numerous conditions that all fall under the CHD umbrella.

Can CHD Be Cured?

No. It is a lifelong condition that is managed, but never cured. Surgeries generally change the anatomy so that oxygenates blood moves generally the way it's supposed to. But they do not cure anyone. Most conditions require continued follow-up care, monitoring, and medication, if not additional open-heart surgeries and heart caths in the future. Many kids who seem fine suddenly experience problems during puberty because their body is changing, so medications may work differently, or the rapid growth might tax their heart in a way it cannot sustain. As much as we have learned over the last few decades that has vastly improved life expectancies and treatments, there is still a long way to go.

Why Should I Care?

I get it. Before my daughter was diagnosed with a CHD, I had never heard of it. But it's the #1 birth defect. And it kills more children before age 1 than all forms of childhood cancer combined. I know from experience. It took my son at 10 months. But most people have never heard of it and it's research is not funded at the levels we need. Sure, more celebrities are finally speaking out about their children with CHDs. Sports stars, actors, television personalities. It's helped raise national awareness. But there are still not nearly enough people who know about it, or realize both how common and fatal it is.

What Can I Do?

Spread the word. Just getting people to know about it is a huge hurdle. Share graphics about CHD on your social media during the whole month of February--or even all year. Light a memorial candle for those we have lost to CHD.

Support someone. Parents of children with CHD and even adults with CHD often need help. Whether it's an extra set of hands to help around the house, funds to cover the expensive care, someone to watch the healthy kids while they stay at the hospital for surgeries and other treatments.

Donate. If you have time or resources available, consider giving to one of the national organizations or local chapters in the CHD community. Mended Little Hearts, Pediatric Congenital Heart Association, Children's Heart Foundation, any hospital's pediatric cardiac unit, or any number of smaller non-profits started in honor or memory of children with CHD. No gift of time or money is too small. Every new person we reach and educate is one more person who can help with outreach, comfort, care, research, support, and further education.

Be an organ donor. There are so many infants who need heart and lung transplants, and not enough donors. Ideally, science will figure out a cure and we won't need donors anymore. Until then, we need more families to be willing to donate their children's organs to help other kids live. And many kids are growing up into adults that need transplants, so we need adults who are willing to be donors as well.

These are my two heart warriors. Tomorrow, I'll share more about my personal CHD stories.

Day 31 - Full Circle

We've reached the end of the 31 days of Patrick. Tomorrow is Patrick's birthday--he would have been six. I thought about calling this post "The End" because it's the end of the yearly Patrick cycle. But it's also "The Beginning" because we're starting over and it's a chance to do things differently. And thinking about the cyclical nature of Patrick's life and our grief, and the end being the beginning, I decided that we had come full circle. So, in that vein, I wanted to share two very personal pictures--the very first of Patrick's life, and the very last.

In the almost 11 months between these two pictures, he lived such an incredible life. He found joy, smiled, laughed, and loved fully. He touched so many lives in so many different ways. And I was lucky enough to be his mom. I was given the honor of being with him for his first breath and his last. I hope that, going forward, I can use all of my breaths to live my life with the kind of joy and laughter Patrick did.

Day 30 - Normal

It's amazing how often medically fragile kids don't look "sick." It's a blessing because you can occasionally forget they have issues, but it's also a curse because other people don't believe your kid has a serious illness. For me, I'm just glad I have pictures of my beautiful boy. Here's Patrick looking like a healthy kiddo.

Day 29 - Coming Home

This picture was around the time we finally got to bring Patrick home from the hospital the first time. I love how his hand is reached out and the clothes look so big and floppy. He looks like a religious angel sculpture to me. I also love the bright pink spot on the blanket--not a stain, but the light of the oxygen monitor shining through. Light-up ties are one of my favorite hospital memories.

Day 28 - My Elf

This outfit was a hand-me-down that my nephew and maybe niece wore first. Then Mira wore it. But Patrick wore it best. He was so stinking photogenic that even with a tube taped to his face and coming out of his nose, he looked like the cutest elf on earth. He would have made even Eeyore smile.

Dogs, Meds, & Depression

These last few weeks have been very difficult for me. I have been emotionally overwhelmed, physically exhausted, and unable to cope. Unfortunately, in conjunction with all of this, I missed 4 to 5 doses of my meds over two weeks. And because I take all my meds at once, that meant I missed all 8 of the meds roughly one-third of the time. Coping is hard enough. Coping without meds is simply impossible.

When I saw my counselor this week, she made a simple suggestion. Get a pill box and load it once a week. Then, each morning I only have to take the pills; not open 8 bottles and all that rigamarole. I've only had it two days and it's already made a huge difference! I have saved so much time and hassle. I can't believe how simple that change was. And why did I never think of it?! Crazy! Just another reminder that outside eyes help, and that when I'm in the hole, I'm not doing my best thinking.

The other thing I discovered these past few weeks are the benefits of having a dog. See, I've never been a dog person. I don't not like them; I just never wanted one. My family didn't own a dog until I was in high school and he was never my responsibility. Ever since college, I've only had cats. Cats are nice and independent. Dogs need too much work. Walks, picking up poop, etc. They lick your face and pee inside and jump and dig and eat shoes. Who needs that?! Too much trouble.

Well, about a month ago, we got a dog (long story). He's been lovely, but he's a crazy Houdini and can't be allowed out in the yard free from a leash. So, I'm the one taking him out multiple times a day. And I don't want to. I want to sit in my chair and play games, zone out, or nap. I don't want to do anything. But the puppers requires it. So, begrudgingly, out I go.

And then I stand in the sunshine and breathe the fresh air, and I feel better. I realize how much I needed to get out, and I'm grateful that my dog made me go. I still get frustrated. Having a dog is like living with a toddler who never grows up. But he is doing me some good. Score one for those who say dogs help with depression.🐾❣️

Here's a pic of my pupper out for a walk in his new coat.

Day 27 - Feet

Babies love feet and love figuring out that these fun toe beans are attached to their bodies. Patrick loved to show his feet, grab them, and even chew on them. He took full advantage of having wires attached to his toes to bring them closer. Feet are fun. That's all there is to it.

Day 26 - The Snuggler

Patrick loved to be held and fall asleep in people's arms. I think he spent so much time alone in his hospital bed that being held was very special for him. I know it was special for all of us who snuggled him.

Day 25 - Sleepyhead

All babies are beautiful when they're sleeping, and Patrick was no different. Here he is looking so angelic and comfortable. It always melted and broke my heart at the same time.

Day 24 - Making Faces

Patrick and I spent a lot of time together in the hospital. One of our favorite things to do was take selfies and make faces. Here are some of my favorites.