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In the madness that is springtime (more on that later), I missed two significant anniversaries last week. One was Tuesday, the official date to mark two-years-since-the-end-of-treatment. As you may (or may not) remember, we didn’t know that that day was Austin’s last chemo. We simply finished our three-day hospital stay and went on home, thinking we’d be back again in a few weeks. But his kidney was failing and we spent weeks going back and forth (that you should remember) before ultimately deciding to halt all chemo and trust that what we’d done was enough. And so far, it has been. Or so we’ll see on Thursday.

The other anniversary was last Saturday, 26 years since I was diagnosed with diabetes. Two-thirds of my entire life. I noticed recently on Facebook that someone had received their 25-year medal from the American Diabetes Association and I felt sort of discouraged. Not that it’s not an accomplishment to live twenty-five good years with this disease, but I sure hope they make a 75-year medal because that’s what I’m planning on needing.

My mom and I were having a conversation with some people a few weeks ago about the role of worrying in parenthood (something I’m not a huge fan of, despite its apparent inevitability). She said that when I was diagnosed, she stopped worrying about me. Not entirely, of course. She’s always kept on worrying about me, either about my diabetes and how it would affect my longterm health or about all the other aspects of mothering a teenage girl. But I thought that was interesting and asked, “Why? Because you felt like the worst thing had already happened?” (which is how I often feel about worrying — or not worrying — about Austin). And she said, “No, not yet. But that the worst thing could happen and that I might as well just let you be happy. That you could be blind at 35 or never be able to have children or lose your legs or die young.”

The worst thing could happen to any of our kids — any one of them could get sick or have a terrible accident, no matter what we do to protect them and certainly no matter how hard we worry. So while we should still make them eat their vegetables and insist they do their homework, we should also relax a bit and let them be happy.  Because you just never know. You know?



There were a few good comments on Facebook following my last post.  One from my friend with a middle school aged daughter that perfectly addressed the tricky issue of privacy in a public realm. She said that she keeps passwords for her daughter’s Facebook account, email and cell phone and would only use them if she deemed it necessary for her daughter’s safety or well-being and (and this is key) if she informed her daughter first.  This is not snooping for the sake of “catching” your child doing something bad — it’s more of an “I’m your parent and my job is to take care of you and right now I’m worried about such-and-such” approach. She also made the important distinction between what her daughter says and does in a public forum (i.e. Facebook) and what she writes in her diary or journal, which is her own private world. One is more open to parental oversight than the other. That makes a ton of sense to me and seems to come from a place of respect and trust.

Another friend, the mother of one of Braedan’s classmates and best buds who also owns the famed Dude Diary, commented that she had almost the exact same experience as me: those few hours of feeling like, “Oh my god, when did my child get so old that he has a private life?” as she watched him hover over his book with his arm hiding his pages, followed by the relief in discovering that the Dude Diary does not actually draw out any deep dark secrets.  Her moment of revelation came at the dinner table when her son suddenly spit out his chewed food and said, “Cool.  Now I can write in my diary about when I last spit out my food.” Aaaah, the lovely boy prompts.  My favorite moment came when Braedan showed me his pages and in response to the question What are you thinking about right now? he had written, “I am thinking about writting in this book” (sic).

I guess we’ll save privacy and deep dark secrets for a future date.

Early in Austin’s cancer journey, when I first requested wishes to transcribe onto the stars dangling from his hospital room ceiling, several people mentioned “homemade cards” in their wishes. As in, “I wish you live long enough to make plenty of homemade cards for your mom and dad.” At that point in my parenting career, with Braedan only three-and-a-half, I hadn’t yet gotten many homemade cards, or at least not many that were more than scribbles and smudges.

But now that I’m seven and a half years into motherhood, I can attest to the special joy of the homemade card. The “Look, Mom, I wrote that myself!” Or “I drew all four of us” with a headfooter father, mother, and two children, all legs and heads but no bodies.

It is the same joy that can be found in a smooshed handful of dandelions, given with pride and love. The gifts that in and of themselves mean nothing, but mean everything because of who they come from.

May all mothers know that joy. And may all children, those grown and not grown, continue to spread it.

Today’s Mother’s Day hike

I am one lucky mama.

A repost of last year’s Mother’s Day blog, just because I really love it:

Here is the latest video from Kelly Corrigan: the thank you note that moms really want and really deserve from their children on Mother’s Day.  Of course, few of us will ever hear such words pass our kids’ lips (or at least not until they have children of their own!), but we can at least hope that somewhere deep inside their beings they feel them. It’s not that we want them to owe us anything — not even thanks (although that would be nice) — but just that we all, as mothers, want our kids to be aware of how hard we try and how deeply we care and how much we love.

I’ve added a few of my own:

Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o’clock in the morning when I’m woken by some stranger taking my blood pressure. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you take a Tums right along with me before I eat my cheesy meals so we can have a “Tums race” or be “Tums buddies.” Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me busy through hour after hour and day after day in the hospital.  Thank you for never failing to flush my PICC line even when it’s midnight and you’ve just drifted off to sleep in your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts.

Thank you, mom, for not forgetting about me, your healthy son. Thank you for making sure I always have fun playdates and for giving me veto power over whose house I go to, no matter how desperate you are. Thank you for emailing my teacher at the last minute so I’m not too surprised by who’s picking me up on unexpectedly long hospital days. Thank you, mom, for waking up early to bake homemade bread for the Teacher Appreciation Brunch. And for running back home to get my library book on library day so I can check out a new one. Thank you for arranging for friends to take me swimming all summer even though Austin can’t get wet. And for sneaking yogurts into my lunchbox so I can eat them away from the watchful and (understandably) jealous eyes of my brother.  Oh, and speaking of jealous, thank you for listening with respect and not getting mad when I say I’m jealous of him, even if it makes your blood boil a little. Thank you, mom, for making sure I know that I’m remembered and heard and loved.

And thank you to my mom for always managing to fit in a several-hour visit to the hospital every single day we’re there, no matter how busy you are. Thank you for shooing me away and sending me home even if Austin is screaming in your arms as I leave. Thank you for reassuring me that it will be okay and for always telling me how okay it was when I get back. And thank you for valuing my daily workout as much as I do and making sure I have time to go for a run. Thank you for loving every second you spend with him in your arms and for making it seem like I’m giving you a gift when you’re really doing me a favor.

Thank you, mom, for taking care of me when I’m sick.

And thank you, mom, for taking care of me when my brother is sick.

And thank you, my mom, for taking care of me when my son is sick.

Wow, well, that was quite a typo, huh? As I think was obvious, the last lines of my previous post were supposed to read (and now do read), “I do NOT want to be like them.” I am going to quickly breeze over that so as not to make myself too superstitious and nervous about possible hidden meanings.

Anyhoo, Austin needed platelets again today (of course, why are we surprised?), but that came after a lovely morning at school. He didn’t even cry when I left him, which is a rarity. It’s been a struggle to fully acclimate him to preschool since every time he gets into a groove there, he’s pulled out again for a three week “vacation.” So today was good and he’s due there the next two days as well.

We were bummed about the platelets but pleased with his much more reasonable blood pressure numbers, even after his transfusion. Maybe the medication is finally at the right dose and doing its job.  While waiting for his platelets to arrive from the blood bank, we spent a sunny if chilly hour outside engaged in our favorite activity: construction gazing.

We’re not expected back at the clinic until Thursday morning, a full two days off. Well, two days off for him. Mark and I are planning to meet — sans children — with our oncologist and nephrologist tomorrow to try to flesh out the next steps in Austin’s treatment. We are hopeful that we’ll get enough clear information that we can make a decision we feel solidly comfortable with. We know, however, that answers to most of our questions simply don’t exist and we’ll therefore have to choose among the lesser of evils.

While Mark and I think differently and come to our decisions via different routes, we both fully understand and respect each other’s decision-making process. We also know what each of our weaknesses are, such as that part of me wants to stop chemo simply because I am sick and tired of chemo. I recognize that and Mark recognizes that and we will do our best to not let such (expected but selfish) feelings influence our ultimate decision.

In my mind, this is a choice between an almost certain bad thing happening if we continue (kidney failure) versus a maybe (?) remote terrible thing happening if we don’t (cancer returning or, worse, spreading). Not to mention the numerous other bad things that can happen as a result of continuing (bone marrow depletion leading to bone marrow transplant, secondary cancers down the road, fatal infections of the central line, etc). We don’t need to make any decision for a while because he still has another round next week from which recovery is bound to be long and torturous (same chemo as this last time — just piling it on).

Neither option is perfect, neither road a smooth one to travel. Both are fraught with danger, sometimes obvious, sometimes hiding around the bend. No matter what we choose we’ll be taking a huge risk. But we will be cautious and we will be wise. And I hope hope hope we will be right.

We are ever-so-slowly making our way through the boxes and putting together one room at a time (or in my case, putting together a tiny corner of one room and then one tiny corner of another, as every time I wander away looking for a screwdriver or curtain rod, I end up getting sucked into something else somewhere else — and usually forgetting said screwdriver or said curtain rod). Anyway, I have pictures of the boys’ rooms to share, the colors and themes of which were chosen by each boy himself.

Here is Braedan’s blue outer-space bedroom:

Learning from the master

The highlight of the house: a connecting door to Austin’s room

And here is Austin’s red transportation-themed room:

That magical door again

As always, just a blur of motion

Their coordinating red and blue rooms remind me of one of my very favorite children’s books, I Love You The Purplest. The story answers that question that all parents of all time have heard from their children, “Which of us is your favorite? Who do you love the best?”

In this tale, a mother and her two sons head out in the evening sun to go fishing on a pond near their cabin. The one son is cautious and kind, slow and hard-working. The other is quick and lively, running and jumping about. They seek their mother’s approval on each page: Who dug up the best worms? Who’s the best fisherman? And her answers appease them both: “Why, you have the most worms and you have the liveliest worms.” Or, “You caught the most fish, but you were patient and caught the biggest fish.”

In the final pages as she tucks them into bed, each whispers in her ear, “Mama, who do you love the best?” And she answers one, “I love you the bluest.” Blue like the calm summer sky, blue like the ripples gleaming on the lake. The other she loves the reddest. Red like the flames of the fire, red like the hot desert flower.

So, tonight I will tuck my sensitive, gentle Braedan into bed in his blue room and my passionate, fiery Austin into bed in his red room. I love them the purplest.

February 2020
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February 2020
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