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Austin’s To Do list from yesterday:
Join cousin’s soccer team, follow cousin around field in the opposite direction of ball for entire game . . . Check.
Make pirate hats with my pals at my birthday party . . . Check.
Enjoy pirate ship cake (and give kudos to Mommy for not letting anything fall apart before I got to blow out my “cannon” candles) . . . Check.
Race around the yard with my mates searching for treasure chest filled with candy corn and Silly Bandz . . . Check.
Make it to four alive, relatively healthy and remarkably happy . . . Check.
The weekend’s events were sad, of course, but also a moving and loving tribute to a life well lived. And it was very clear, from the moment we walked into the wake on Friday night and were greeted with hugs and tears from Scott’s aunts, uncles, cousins and in-laws, that Mark belonged there. He was even a pallbearer, furthering underlying his role in that family. Now I’m just glad it didn’t happen once we were already away.
Speaking of away, we have settled on new dates, with tickets and all so the trip is indeed happening. We will leave here on Friday October 15 and return the following Tuesday. Please save your emergencies for after that, thank you very much.
And now for today, which was spent in full celebration mode as Austin has made it yet another year and is now a big strong four-year old. I parent-helped at school this morning, armed with pirate cookies.
Then we had a picnic in our backyard and went for a run before picking Braedan up from his after-school tennis class. The boys are now wiling away the rest of this unseasonably hot afternoon jumping on the birthday present of the century.
Tonight we’ll have dinner in the yard and cupcakes with candles (I’m saving the real cake for his party this weekend). And another year will have gone by.
Not an easy one, that’s for sure. One filled with fear and sadness, worry and pain. One filled with endless hours and days and weeks in the hospital, chemotherapy, radiation, surgeries and transfusions (oh, and stitches!). But one equally filled with tender moments, snuggles and kisses, laughter, bikes rides and picnics. Splashing in the pool all summer (even with that big blue arm) and thoroughly enjoying this little thing called life.
So I’ll take it. We’ll take it. All that’s come before us. And all that lies ahead. The good, the bad and the ugly, the horrifying and terrifying alongside the magnificent and miraculous. I will welcome every bit of life the next year throws at me just as long as on next September 21st, I can sit back, tired but satisfied after a full day (week, month, year) of celebrating my child.
Happy Birthday, Austi-bean. And many many more.
You know we’ve become mighty good at seeing the bright side of otherwise dark situations. It’s a survival mechanism, I suppose. So, we’re now looking forward to a “leaf peeping” trip, sometime in October. Still trying to find the perfect set of days, in between class pictures and field trips for the kids, a very unpredictable trial for Mark (as in, the jury should be able to decide this one pretty darn quickly, but common sense doesn’t always prevail. . .), doctors’ appointments, board meetings, and so on and so forth. Combine that with the fact that direct flights from Cleveland to Portland happen maybe once a week (and layovers with kids should be avoided at all costs), and we’re having trouble settling on the exact dates. But we will definitely go on this trip.
We are hoping (silver lining here) that either of our two sets of friends, one in Boston and another in New Hampshire, will be able to visit us during our newly planned getaway. Plus the kids will be more settled in their school routines (and more ready for a break).
Speaking of school, Austin finally started this past week, after a painfully drawn out orientation schedule for pre-schoolers (which I found brilliant Braedan’s first year, but now, in my fifth year as a preschool parent, I’m not so thrilled with). He is doing fabulously, by the way, so much more ready to separate from me this year than he ever was last. He is becoming more independent and talkative by the day, and is in an extremely happy place.
Braedan, too, is doing better. His complaining about school has quieted to the usual murmur, louder at breakfast when he’s still half-asleep and I’m nagging him to finish his breakfast, put on his shoes, get out the door. His teacher, if not exciting, is really quite nice, something he has begrudgingly admitted. He started tennis lessons at school on Tuesday afternoons, which is helping.
He will also meet with the psychologist at Rainbow next week for a one-on-one session. Mark and I met with her last week and we feel very fortunate to 1) have someone so readily available to help and 2) to have such a ready-made reason to seek help. I think most six-and-a-half year olds would benefit from having a grown-up to talk to, to help them learn how to express their emotions in a healthy way, to teach them skills for de-escalating anger or handling disappointment. In fact, I think most people any age would benefit from that. It’s not like they’re gonna sit around and talk about cancer for an hour; that just happens to give us a great excuse to get in the door.
So, all in all, things are fine. We have the wake tonight and funeral tomorrow; the kids will sleep at Mark’s parents since all the services are on the westside. They’re as happy about that as anything else. And Maine still stands, awaiting our arrival. Silver linings abound.
Oooooooh, things just don’t always work out the way we expect them to. Like we needed more proof of this, right? The father of Mark’s best friend died yesterday afternoon and the funeral is on Saturday. Soooooo, we’re not going.
I’m on hold right now with Continental, trying to re-deposit my miles for use on a future (and hopefully soon) trip, although our flight was set to leave in less than 24 hours so I’m not sure I’ll be successful. If I am, we’ll try to go within the next two weeks or so.
Oh, I’m so so bummed. And now I feel guilty because I was actually mad at Mark for wanting to be there for his friend. Nice of me, huh? I was just so ready, so eager for this special family time. But of course, the world does not revolve around my travel schedule and a lovely woman has lost her husband. And our three dear friends have lost a father. And three more friends have lost a father-in-law. And six beautiful children have lost their beloved grandfather.
So, we’ll stand beside Scott and Cathy and all the rest this weekend, right where we should be. And Maine will be there in a month, standing beside the sea like it always has. The air will turn cooler and the leaves will turn colors and we’ll have our special and needed family time soon. Soon.
The party went off without a hitch. Well, except for that rain storm that conveniently began right at six o’clock and didn’t let up for hours. (The weather forecast was spot on . . . imagine that.) But we left the candles sputtering outside and managed to fit more than one hundred people inside. It was really a lovely evening: an abundance of food and drink and an abundance of love and celebratory words for Louisa.
There was such an abundance of food, in fact, that Austin and I drove down to the hospital yesterday to deliver trays of gourmet treats to the oncology floor. I’d called the nurses’ station ahead of time to ask them to set out a table for families and staff to partake of our leftovers. It is such an extra burden on families to have to purchase their own food, for parents as well as the healthy siblings who often spend hours if not days if not weeks on the floor. (So, if you ever have tons of extra food that you don’t know what to do with, let me know . . .)
And now, did I mention that we need a vacation? Oh, and did I mention that we’re getting one? Our next door neighbors here on Wellington have an old farmhouse on the coast of Maine that they visit for long stretches each summer and then rent out when they’re not there. Well, there were no scheduled renters for the month of September and (knowing we could use a break) they offered it to us. And we, prone to living life to the fullest, jumped at the chance.
So, we are heading to Tenants’ Harbor, near Penobscot Bay, this Thursday morning to stay for a long weekend, returning Monday afternoon. The kids will both miss a few days of school, but it just doesn’t matter. This is an incredible opportunity for us to step out of our usual rat race and simply be together for a few days, exploring a new environment and savoring slower simpler ways. We have trails to hike and seals to view by boat, there’s a pond to catch frogs in and charming New England towns to explore. I’ve long regretted that my children have had few authentic travel experiences; they’ve been to Disney World and Kalahari, fancy (but exclusive) resorts in Jamaica and Puerto Rico. But they haven’t seen our country and its grand variability; they haven’t witnessed other ways of life, those dictated by oceans and their tides.
Although I have to admit that the thing they’re most excited about is that we rented a minivan!
Well, the show must go on. The tree was finally removed today and the cable line was finally repaired today (after we were promised it would be yesterday and the day before that and the day before that). So finally, finally, here I sit again at my computer with a quick update of the past few days. Because preparing for this party was not the only thing on my to-do list.
Austin had another ultrasound yesterday, a follow-up from last month’s when we saw that shadow on his liver. (Yeah, that seemed fast to me too.) Well, everything remains as it was. There is still something visible on his liver but it is unchanged from the last time, always good in the world of potential cancer. We again went through the various possible options for finding out what it is and determined that none of them are practical or safe or effective. As our oncologist said, moving forward (or not) all depends on our tolerance for not knowing what this thing is. And, in truth, our tolerance for not knowing is quite high. All the reasons we had against extra action a month ago stand today. So we will carry on and re-image in four more weeks.
His other lab results look excellent. His hemoglobin is still high, which means no need for blood for a good long while (phew). His blood pressure is down, in an almost perfect range for an (almost) four-year old. His creatinine remains where it was two weeks ago, which is good good good. And, in perhaps the best news of the day, his oncologist said there’s no reason to see us again before his next ultrasound, scheduled for October 7. A full four weeks! Woo hoo.
And now, the boys are at the Tribe game with their Gramp and “Uncle Pauly,” the house is (almost) spotless, the tables, chairs and twinkle lights are all set in the backyard and all there is left to do is hope the weather forecast is wrong. Now how hard can that be?
It was hot today. Hot and sticky. Then in the late afternoon, a storm blew in. One of those bizarrely intense storms that lasts maybe five minutes.
I was standing in the driveway when it started, unloading tiki torches from my car for the retirement party I’m hosting this weekend. With 100 guests. (That plays into the story, trust me.) And suddenly it started hailing. Literally, it was 90 degrees out and balls of ice were falling from the sky.
I made a mad dash for the house because the boys were inside alone growing increasingly anxious from the increasing noise. We stood on the back porch for a moment in awe of the wind and rain and then I ran upstairs to close windows.
And that’s when I heard it. “Did something fall?” I called down. “Yes, Austin, on the stairs,” Braedan called back, not quite the sound I thought I’d heard. But I scooped up my spooked boy and we continued shutting windows.
And that’s when I saw it. A tree. A hundred year-old zillion-foot tall Cleveland Heights tree, like the many that line our yard. Only this one was lying across the yard. In the yard. On the ground.
It didn’t hit a damn thing. Nothing. Not the house, not my car, not the gorgeous dogwood that sits right in the middle of our yard(which it missed by mere feet), not even our picnic table. It did take down the phone and cable lines, but not power.
So we were lucky again. Although the kids were a little freaked out and when the wind picked up again, Braedan said, “I think we better get out of here!”
Now for the clean-up. And then the party. And then? Then a vacation.
Braedan handled Austin’s first bout with cancer beautifully. He made it through the entire thing unscathed, as if it was just another thing you deal with when you have a little brother. He was remarkably happy, well-adjusted and trusting.
The second time? Not so much.
I’ve been hesitant to write about this because I felt some need to protect him, as if his current struggles are somehow his fault or should be hidden. But they’re not his fault and hiding them certainly doesn’t help.
He is angry and frustrated and anxious and fearful and contrary and argumentative and a little bit lost. Most of all, more than anything, he’s angry. Angry at me and Mark, angry at Austin, angry at the world. The start of school, which I’d been eagerly awaiting because he loved it so much last year, has only made things worse.
I understand where he’s coming from and I completely understand why it’s happening now. It’s classic post-traumatic stress. He worked so hard for so many months keeping it together, being good because we were exhausted, being nice to Austin because he was sick. But he’s not sick anymore and we’re not quite so exhausted anymore and it’s a safe time to let that rage out. And let it out, he does.
Of course, understanding the source of his anger doesn’t make him any easier to live with! So we’ve made an appointment with the pediatric psychologist at Rainbow who works specifically with families, and especially siblings, of children with cancer. I’ve also spoken with his teacher and the social worker at his school, so I remain hopeful that we will find effective ways to work through this.
Cancer casts a long shadow, that I know, and the shadow can darken the lives of more people than just the patient. More than anything, I want my children to be happy. And as hard as we worked to make Austin better, we will work to make Braedan better. It’s his turn.