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When I was a freshman in high school, I took an introductory journalism course. That spring, a girl I’d known from my neighborhood went with the Heights instrumental music program on a trip to Asia, where she contracted a rare lung disease, which landed her in a coma upon her return home. She died on her sixteenth birthday. I wasn’t yet experienced enough to be on the official newspaper staff, but this girl and I had lived on the same street and had gone to the same school since our earliest elementary days, so when nobody stepped forward to write the article on her life, I did.
I sat in on the counseling sessions the school had set up for her friends, furiously scribbling down the conversations between her closest friends and her boyfriend. Then, accompanied by my mom because I must have been nervous, I walked over to her family’s house and sat at a picnic table in the sideyard to interview her parents and her younger brother. It was, to say the least, a fairly intense experience for a 15-year old, as I dug into their grief and then had to craft a story (with a strict word count) that captured all she had been to those who loved her. I was proud of the story I submitted, even though the one that was eventually published had been sanitized and read a little more news article and little less human interest.
But the significance of that experience is not lost on me as I’ve now spent years upon years writing about darkness and sadness in a way that I hope brings a sense of light and comfort to people.
Today, I was asked to write the article for the Heights Observer on Becca Meyer, who died on Saturday, less than twelve hours after turning six.
Sometimes, in our darkest days with Austin, when we thought he might not survive, I would wonder what my life would have been like if our second baby was conceived a day earlier or a day later than Austin had been. Or even a minute earlier or a minute later. What if I’d gone to the bathroom, gotten a drink of water, fallen asleep first and this child with these specific genes never came to be? Would we have been spared our great sorrow, our worst fears, his tremendous suffering? But every time I allowed myself to think that thought, it was immediately replaced by the full and unwavering knowledge that I would take Austin, with all his physical faults and with all the suffering that we did endure and that we may have endured. I would always still choose to have had him, even if it was only for a short while.
I have to imagine, that because Becca was adopted, her parents have had a similar and yet powerfully different set of what if’s to ponder. What if there was one family ahead of them on the list? What if some other child had been born on June 6 instead of June 7 and they’d been called for that one? What if her birth mother had decided otherwise? How different would their lives be? Would they be spared the unthinkable grief they now feel?
But I know without hesitation that if they’ve ever allowed such questions to run through their minds, they are immediately replaced with two unwavering truths.
One: They would always take the joy of having known this spark of a child, the gift of having loved her and been loved by her, … for the enrichment of their own lives, they would always choose Becca.
And, more importantly, two: If the child we knew as Rebecca Alison Meyer was destined to be in this world and if it was written in her genes or in her stars that cancer would claim her life, then who better to entrust her short life to than the Meyers? Who better to surround her with love and laughter and friendship and all things princess than Kat and Eric, Carolyn and Joshua? Who better to hold her, guide her, sing to her, dance with her, kiss her and love her than the family she was given? How lucky were they to have been given the incredible honor of shaping the course of her too short life? How lucky were they to have had the opportunity to fill it with so much joy? How lucky was she?
Loving her so well and loving her so much may well be the greatest burden of their lives. But I do not doubt that it is also their life’s greatest blessing.
Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.
This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many many explanations needed. Because nothing in the cancer world is ever that cut and dry.
First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny and common hole in the wall of one of the chambers of the heart) still exists but poses no threat or consequence to his health at all. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.
The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth. She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed. So, off to genetics we’ll go, in the next month or two.
The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?
So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.
Like Austin himself, who finds joy in the most unlikely places, we take what we can get.
I had an opportunity over the weekend to give a speech on behalf of Jeremy Cares, an organization that provides gifts to families who are in-patient over the holidays — like theirs once was and like ours almost was.
My talk can be viewed here. It’s fairly long and a bit fuzzy at times, but I think you’ll enjoy it. I got a lot of positive feedback afterward and even a standing ovation when I announced just how fine Austin is now. I do wish I had pulled my hair back though since it keeps getting in my way and I also should have put down the five sheets of “speech” I’d brought with me, only to end up speaking from memory since there was no podium. But now that I’ve pointed out all the flaws, take a look. (The video is located on Facebook right now, so let me know if you’ve yet to venture into that world and are unable to see it.) Note: Now it’s a few hours later and I was told by many that the video was “unavailable” so try the link above, it should now take you to another site and you should be able to view it.
Here also is the clip of Jeremy George’s family last week on Good Company, our local morning show, describing how their organization came to be.
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.
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.
I’ve been asked to chime in with my thoughts on the whole Tiger Mother thing. Of course, the entire thing has been commented on by thousands and thousands, but you know I have an opinion, so here goes.
First of all, we simply must accept the fact that everyone has the right to parent in their own way and what works for one set of parents may not work for another. Part of the problem is the need people feel to declare their style as “superior,” which just creates defensiveness and a desire to retaliate on the part of others. Amy Chua’s very title, “Why Chinese Mothers Are Superior” set her up for the vast and deep anger that is being thrown her way. Had she called her essay “How Chinese Mothers Differ” or any other benign, nonjudgmental title, the fury that ensued would, well, would not have ensued with such a fury. Some people have even suggested that the title was chosen upon the advice of her publisher because a massive national controversy the day before a book is released does nothing if not drive up sales.
So, I’d like to propose a kinder, gentler way — that we allow others to parent in their own style, according to their own values and background, while we parent in our own way without casting judgment on one another (or one another’s offspring). That being said, I am now going to cast a little judgment on both styles of parenting, the Chinese and the Western (as defined by Chua).
Obviously, I believe in unfettered joy as a natural and vital part of childhood. A child’s ability to experiment freely with their vivid imagination, to use their inherent creativity to see and approach the world in unique and nontraditional ways, to define themselves based on the basest qualities (what they love, what they want) is, in a word, wonderful. As in full of wonder. I don’t think we should do anything to squash that sense of freedom and expressiveness, that joyous ability to focus so thoroughly on whatever seems interesting in any given moment without care for whether it “matters.” Think of a three-year-old studying a caterpillar creeping across a leaf. Should that child be left alone lying on his belly in the dirt to study that leaf for as long as it takes to satisfy his curiosity even if we grown-ups consider it boring or a waste of time or should he be dragged inside to practice the piano (which, by the way, said child may think of as boring and a complete waste of time)?
I am all for exploration and experimentation and imagination run wild. That’s what being a kid is about. And when else in life do you get to “waste time” with such a sense of purpose? Don’t we all wish we could latch on to some silly notion or frivolous idea and immerse ourselves in it for hours or days or weeks on end?
I obviously lean more towards the Dolphin Mother end of the spectrum than the Tiger Mother (and don’t get me started on Mama Grizzlies!). But there are some aspects of Western parenting, particularly in the past decade or so, that I find worrisome. As Chua points out, there is a tendency among the current generation of Western parents to insert themselves into their children’s lives in order to prevent them from experiencing failure. I think failure is great. Granted, it’s not fun. But it is enormously important. Am I saying that I plan to rejoice when my child comes home crushed by a bad grade or devastated after being cut from the team? No, of course not. I will hug them and suffer alongside them (perhaps even more than them) but I will also know that they are learning a valuable life lesson. We simply have to fail. Hopefully not all the time, mind you! But failure is not, in and of itself, a bad thing. And as parents we need to let our kids fail without blaming others (the coach who pushed too hard, the teacher who expected too much). I don’t believe that kids need to be coddled in that way. They need to own the failure in order for it to be useful.
But all this Tiger Mother business and the huge outcry against her (and the loud support in favor of her) is simply one more example of how lousy we’ve all gotten at disagreeing. You’d think that members of this society would be experts at disagreeing because we do it so darn much! But we’ve really gotten very bad at it. If I read Chua’s article and think to myself, “Wow, that seems harsh,” or even “Damn, I would never treat my kids in such a cruel way,” am I somehow then entitled to go and send her a death threat? A death threat! The woman has received hundreds of them each day. That’s silly, people. Just disagree and get over yourselves.
Parent your children in the very best way you know how. Do some research on key issues like feeding and sleeping, have some basic understanding of the stages of development and what to expect out of each. And then go from your heart. Listen to your children and listen to yourself and do what feels best. Are you gonna make some mistakes? Of course. Amy Chua did and her book addresses that. Those of us with different styles and different (not lower) expectations of our children will make mistakes too. Our kids will most likely forgive us (as Amy Chua’s have), whether they end up as concert pianists or shop-owners.
I just hope mine end up happy.
I don’t use that word lightly. I’m not just exaggerating or whining about how long our days and weeks and months have become. No, I really mean it: I can’t clearly see an ending.
This blood pressure issue, while a minor sideshow to the grand drama of Austin’s cancer, is one of those sneaky things that is going to follow him — and us — forever and impact the rest of his life.
He’s had high blood pressure since all this began nearly three years ago. It’s due to the damage his kidneys have withstood (or not withstood). The real bummer is that hypertension is both a sign of kidney damage and a cause of kidney damage. In order to keep that little partial kidney as happy as possible, we really need his blood pressure in a perfectly normal range all the time. Which never seems to happen. Now, even with the addition of another medication, it’s still running slightly high. And the manual cuff I have at home is frustratingly difficult to use, so Mark just ordered me my very own (and very expensive) automatic blood pressure machine. How’s that for a nice Mother’s Day present?
And then there’s the near certain failure of that kidney. I am so hoping we can make it at least a few months into the post-treatment period before dialysis. Just to give us a much needed break without the two things overlapping. Of course, I really want it to last the full two years, but that seems less and less likely each day as his numbers creep in the wrong direction, one slipping down that we want to stay up and others jumping up that we want to stay down. He has another GFR on May 17 so we’ll see if it’s managed to hold steady at its new low or if it’s dipped into the this-is-really-happening, time-to-start-dialysis range.
And then there are all the other risks far down the road that will trail us for years to come. Assuming a transplant goes well and this cancer doesn’t return, he still has a high risk of developing a secondary cancer, probably leukemia, from all the radiation and chemotherapy his body’s been subjected to.
I hate the idea that his life might not be normal. That, more than anything else, is what I wish for both my boys. Not super fabulous, not spectacularly extraordinary, just normal. So he can be a kid and go to school and learn to read and play kickball and ride a bike and have a girlfriend and go to college and live by himself and get a job and see the world and fall in love. So he can be a dad and then a grandpa. But some days I feel doubtful that all those things could ever happen. The thing I fear most is, well, it’s The Thing we all fear most. But the thing I fear second most is that he gets so bogged down by all of this, so burdened by lifelong health problems, that he someday says to us, “Mom, Dad, why did you bother? Why did you work so hard to save my life when now my life sucks?”
I know it seems unlikely. Not our joyful little Austin, who never lets anything get him down, who still runs and leaps and climbs and rides, who manages to squeeze joy and laughter out of each and every day, no matter the horrors he endures . . . our happy little Austin would never say such a thing. But I worry nonetheless. I worry it will be never-ending.
Mark and I went to the Rainbow Babies & Children’s Gala this past Saturday and while we were there, I bumped into a mother I had met on the floor during Austin’s first round of cancer. Her daughter also had Wilms but was diagnosed at a much older age, which is unusual for this disease which tends to strike kids under five, and it had already spread to her lungs.
I remember the day we met: A friend of mine who happened to work at the hospital back then introduced us, thinking we might want to talk since our kids had the same cancer. Well, it might have been the same but our circumstances couldn’t have been more different. We stood awkwardly in our doorway while Austin, having just celebrated his first birthday but not yet walking, crawled around on the floor and her daughter, eleven at the time, walked dizzily about the halls under a cloud of chemo.
We didn’t really have that much to say to each other that first time, both being so caught up in our own insular worlds, so we wished each other well and let it go. But we sure had a lot to say to each other on Saturday, as we stood on the ramp to the bathroom and shooed women past us so we could talk, talk, talk.
Her daughter passed away last summer, which I knew before I saw her so there was no awful moment of truth. But she was okay, this woman, she was doing well. I mean, I trust she has had horrible times and I don’t doubt that she misses her daughter every second of every day. But, even with all of that, she was fine.
Which I found enormously refreshing.
There were no tears between us as we stood there and shared our stories and expressed our sorrow for all the other has endured. We have both had terrible experiences (her’s obviously more terrible than mine), and yet we are both okay.
I am sure that some people would have looked at her that night, all dressed up and cheery, bidding on auction items with one hand and holding a glass of wine in the other, and thought she was faking it or somehow hiding her deep grief. As I am sure that some people look at me and think, “She can’t really be that okay; she must be putting up a front and breaking down behind closed doors.” But it’s not like that. You simply learn to adapt, a child with cancer becomes another (albeit overpowering) part of your life, and you take the horrible and mix it in with the wonderful and you find a way to live no matter what befalls you. You just keep going. Not only because you have to (which you do), but because you want to.
So there we stood in line at the bathroom, two mothers of children with cancer, one gone, one still fighting. We hugged and we smiled and we even laughed. But we never cried.
Because we are both okay.
No results yet from today’s test but have a timely post to share nonetheless.
Parenting is full of big moments, both good and bad. Significant decisions, momentous occasions, important milestones. But sometimes it is the little moments, those small joys of parenting, that mean the most.
Snuggling in a thunderstorm, like we did last night, is one of my great joys of motherhood. The young child is awakened by the boom of thunder, cries out in the darkness wondering what just happened, immediately calmed by your presence at the door. What starts out as scary morphs into a middle-of-the-night adventure with Austin snug between us watching for flashes of lightening out the window, a grand fireworks display in the night sky. As you start to doze off, another clap jolts you back awake, little fingers gripping yours, small heart beating in your ears. Finally the rumbling would get more distant and the pause between lightening strikes would grow, grow, grow until they were none. And that small body would nuzzle in so close, so tight, drifting back to sleep.
Nothing can get to us here. Cancer is but an idea. Kidney failure insignificant. We are together in that big bed and we are safe.
I went for a run today, which wasn’t terribly productive. The sidewalks were nonexistant and the roads had several inches of hard-packed snow making me feel like I was running in place. Which is how cancer treatment in general feels sometimes. Like we put forth enormous effort and get all tired out, but don’t get much of anywhere.
That’s not true, of course. We should be “getting somewhere;” it’s just not a place we can see. And the marbles are indeed moving, one jar almost equal to the other (although I think it’s time for me to sneak some extras into the “Days Left” jar). But I do feel like we’re just bidding our time, waiting for it all to be over.
We all start to feel like that at this point in the year (especially this year, when the whole country is buried under snow) — wondering when spring will come, counting the days until the warm weather hits. It’s especially so when you’ve got a kid with cancer: Let’s just get through this, let the dark days end, let the sun shine again.
Funny thing, though, is that Austin isn’t bidding his time. He isn’t just waiting for it all to be over. He’s still living each day to the fullest. Today we tried to build a snowman (but it wasn’t good packing snow), he went sledding with Braedan and Daddy, and in between he jumped on the bed and the couch and down the stairs. No waiting for this kid, no running in place.
There is still joy, even with gray skies.
Sorry to leave you all hanging on such a bad post back there. These past few days have certainly been a series of ups and downs. We are home, released first thing on Thursday morning. Austin’s spunky self has re-emerged, he’s jumping on the mini-trampoline and playing rocket blasters with his brother (with whom he is miraculously getting along — maybe absence makes the heart grow fonder?). He’s been completely happy and seems mostly normal, despite the fact that he isn’t eating much.
We’ve gotten the hang of the PICC line, especially now that it’s covered with the “tube” part of one of Mark’s athletic socks (an “arm bra”). Yesterday we went to the clinic for labs and a dressing change which was a fairly miserable experience because the tape they’d used in surgery was much stickier than the regular one and took ten minutes to slowly and painfully peal away from his already sore arm. Then, late last night, I went to flush the line and couldn’t do it. It was stuck, nothing going through, total resistance. You’re not supposed to push too hard when this happens in case there’s a clot that you don’t want to push further into the blood stream. It was the middle of the night at this point and I figured there was nothing to do until morning, but I tossed and turned for hours convinced this PICC line wasn’t working either. Imagining my Saturday in the ER, with twelve different doctors trying to figure out what to do with this kid who clearly needs a central line and clearly rejects every one of them.
I tried to flush it this morning, again to no avail. Called the attending oncologist, who didn’t sound too alarmed and told me to call our Home Care nurse. Well, I’d spoken to this woman yesterday when she called to schedule a weekly visit to change his dressing. I told her we’d be in the clinic each week and they could do it there, so after making sure I felt comfortable with the flushes she said, “So, it sounds like you don’t need me?” “No, I guess not,” I answered, never guessing I’d need her less than twenty-four hours later. When I called her today, she listened to our predicament, and then apologized for having canceled us as her patients! Oh great. She said she could reinstate us on Monday and wished me luck (thanks a lot).
So there I was, mentally preparing for an ER visit (not exactly the place you want to bring an immuno-compromised child) when I decided to call our old nurse practitioner, a long time friend and my go-to for advice. She calmed me down, urging me to avoid the ER at all costs, and walked me through some options, one of which worked beautifully . . . and the line flushed! All was suddenly well and every minute of this almost-awful day now feels like a gift.
And the shots — oh, this kid is a trooper. On Thursday night, he screamed and cried so hard that I cried, just furious that, on top of everything else he has to go through and everything else we have to go through, now we have to add this twice daily bit of pain and suffering. But by Friday morning, he barely let out a peep. And the three shots he’s had since then have been a piece of cake. He climbs into my lap, making sure Braedan is nearby with a distracting toy, and Mark pops that needle in his skinny little leg and it’s over. “One and done,” is Daddy’s motto.
I’m totally wowed by him, by his ability to just adapt and take it and make it all okay. By his truly incredible resilience and his endless supply of strength. By the smile and the laugh and the jump that inevitably come after the shot and the prick and the poke. He keeps going and that lets us keep going. He guides us through this with a three-year old’s sense of possibility and hope and joy.
How lucky are we?