It's Not About the Why, It's About The Win

My Own Little Christmas Carol

I’m no Ebenezer Scrooge. I’m not selfish or greedy, at least not on most days. I like Christmas, I like spending time with my family and friends, and I think Tiny Tim is adorable. Of course, that doesn’t mean I don’t have a lot to learn from my Christmas Ghosts, I do. Andrew’s leukemia and Michael’s brain injury are my Jacob Marley. They are the chains that bind me and they are the heavy burdens that I carry. But they are also the experiences that enlighten me.

My Ghost of Christmas Past brings memories much more pleasant than Scrooge’s. I see family dinners, Christmas Eve Mass, and exciting Christmas mornings as a child. I see gifts under the tree with a fancy cursive “S” under the word “from” – my mom and dad made a great Santa, even long after Santa’s secret was out. In Christmases Past from not so long ago, I see my own kids waking up at the break of dawn to rip open their gifts and see if Santa ate the cookies they had left for him. When I think about these Christmases Past, I think of happiness, for sure, but I also think of innocence with a dose of naiveté. It was the innocence that came from living in a world where my children were untouched by illness and injury, when such evil things happened to other families, not mine.

Like Scrooge’s Ghost of Christmas Present, mine doesn’t hesitate to show me both the sadness and the happiness that comes at this time of year. The innocence of Christmas Past has faded, for now I know of the pain and fear so many are feeling as they face difficult treatment plans, celebrate Christmas in a hospital room, or worse, spend Christmas with holes in their hearts and an empty place at the table. Knowing these realities – and accepting my own – reminds me that every day is a gift, and we should treasure the people we love, no matter where they are. As terrifying and heart-wrenching as last year was for me, I had the best Christmas I’ve ever had. Andrew’s diagnosis and Michael’s accident put Christmas in perspective for me. I didn’t just learn what Christmas is really about, I experienced it first-hand – faith, hope, and joy. That’s it. Nothing else matters.

What will my Ghost of Christmas Yet to Come show me? Unlike Scrooge, I’m not afraid of what lies ahead. I see my boys grown and healthy. I see them wise and strong. I see them holding on to the faith, hope, and joy from their Christmas Past, and I see them inspiring those feelings in the people around them.

As Scrooge himself said, “I will honor Christmas in my heart, and try to keep it all the year. I will live in the Past, the Present, and the Future. The Spirits of all three shall strive within me. I will not shut out the lessons that they teach.”

Merry Christmas everyone!

Michael update: Michael turned 15 exactly two weeks before Christmas, and he spent the first week of Christmas break in a driver’s education class. All that information and all those tests reminded us of his challenges with memory, and the days of noisy chatter and constant stimulation were very hard on him. At school, he gets enough breaks to keep this in check, but this class was very hard for him – not the content, just the format. But, as Michael always does, he pushed through and will officially get his permit at the DMV next week. Watch out local drivers!

Andrew update: Headache mystery solved… we hope! Andrew had a very long appointment with some eye specialists a few weeks ago, and they determined that a combination of his meds is causing a rare side effect caused “soft muscle weakness.” This means the muscles of his eyes aren’t strong enough to focus, so he’s in a constant state of blurriness that can’t be fixed with corrective lenses. Sometimes it’s worse than others, and all the doctors agree it should get better on its own eventually. The neurologist is confident this is the cause of the headaches, and that’s good news. Now he uses some old-fogey readers when doing close-up work to lessen the strain on his eyes, and we’ll just deal with the headaches as they come. On the Monday after Christmas he’ll have his final appointment in his fifth of twelve 84-day cycles of maintenance therapy. This will be a quick appointment, just an exam and a quick push of chemo through his port. He’ll be home for steroid week, which is probably for the best since he ends up home for much of it anyway. His counts were down to just above the acceptable level a few weeks ago. Last night after going to the Avs game he broke down in tears because he said he just felt so tired and achy, and he’s pale and covered in bruises. So my Christmas wish is that his counts haven’t dropped down too far so we can stay on track.

A Change in Gratitude

I just sat down to write another “Top Ten Things I’m Grateful For” list as a Thanksgiving post again this year. Hmmmm… what can I say that hasn’t already been said? I went back and read the one I posted last year. Sincere? Yes. Heartfelt? Yes. Predictable? Yes. Lame? Well… yeah, sort of.

So I’m going to shake it up a little this year, with the caveat that the things on last year’s list still apply. Family, friends, the dog, WWA, hospital staff, blah, blah, blah – I still love all of you and am forever grateful for you. But, no offense, I just feel the need to change my gratitude today.

Here goes, this year I’m thankful for:

10. Giving myself permission to be honest. Some days lately, I don’t have an “I’m fine” in me. Bottom line – I can sugarcoat this all I want to try to make myself feel better, or sometimes to try to make other people feel better, but this situation sucks and it will continue to suck for a long time. Yes, Andrew is hopefully done with the harshest part of treatment and each day he’s closer to joining the 85% of kids who can call themselves “cured.” Yes, Michael is thriving in spite of his injury and parts of his recovery have been nothing short of a miracle. Yes, so much is good about where we are this Thanksgiving compared to last, and I truly am grateful for that. But now that I have the strength to reflect on it all, I’m letting myself be very sad, and sometimes pretty damn angry, for all the boys have had to go through.

9. Venting. See paragraph above. I’m now allowing myself to do this every once in awhile, in a quite unpredictable manner. Word to the wise – if you see me in person and you’re in a hurry, you may want to just nod your head and say “hi”. The token “how are you?” may turn out to be more than you bargained for.  :-)

8. Embracing “woo-woo” life skills (and I mean that in a good way). I’ve always believed in the connection between the mind and the body, but I never thought it would apply to me. Huge thanks to my friends Jean and Kathy and my new friends at The Art of Living for helping me find this path. I’ve moved so far out of my comfort zone in the last few months, and I’ve discovered a part of me that I didn’t know I had. I like it. (This topic is a whole other post, or several, coming soon….)

7. Letting go of the grief. I will no longer silently grieve for my kids’ lost pieces of childhood. I will no longer cry inside when I catch myself thinking about the part of Michael’s smile that’s not there, or the burdens he will always bear from the long-lasting effects of his injury. I will no longer boil inside when I become the target of Andrew’s uncontrollable emotions during steroid week and his rage during post-steroid-week detox. Instead, I will talk, I will write, and I will breathe. I will accept things for what they are, day by day.

6. Seeing past the stereotypes. Some of my kids’ most treasured experiences in the last six months or so have come in unexpected packages, such as dreadlocked tattooed head bangers and DJs with names like Uncle Nasty. It’s hard for me to not raise an eyebrow sometimes, but experiencing this has helped me realize that good really is everywhere. I’m very grateful for everyone who has helped make the boys feel connected to this rock-n-roll life they find so fascinating, and I’m also grateful for learning first-hand not to judge a book by its cover.

5. Knowing I’m not alone. I am one of the lucky ones – I’m close to my family and I have groups of friends that make sit-com writers drool. I have a husband who would do anything to snap his fingers and make this all go away. From day one, I’ve been surrounded by love and support. Yet, so many times, I’ve felt completely alone. Enter my virtual family of fellow cancer parents who truly understand what it’s like to live this life. For my online BFF and many like her around the world, I am grateful every day.

4. Honoring the many that have gone before us. Although childhood leukemia is no longer the death sentence it used to be, it’s still the leading cause of death by disease among children. My heart aches for parents who’ve watched this disease steal their children from them, and at the same time I’m forever grateful for the thousands of angels who have helped guide researchers and doctors toward improved treatment plans so that other children may live. To those families, your sacrifice is not lost on me, and “thank you” is simply not enough.

3. Truly believing that good comes from every situation. Sometimes – okay, maybe a lot of the time – lack of patience gets the best of me and this one is a challenge. But I do believe it, and I’m grateful that the universe has a way of making this happen, even if sometimes it takes awhile.

Well,  to be a true Top Ten Thanksgiving list, I guess I need ten things I’m grateful for, don’t I? Looks like my new gratitude will have to include some of the tried and true Thanksgiving list-makers. They really are the most important, after all.

2. Michael. Now several months into high school, Michael is doing amazingly well. Some things are still challenging – and we’re very grateful for his school accommodations and very proactive school advocates – but overall he’s keeping up with the work and enjoying the new big world of high school. His teachers are very complimentary of how hard he works, and they’ve all made comments about his bright personality and determination to succeed. I’m beyond proud of him. He’s also made some new friends who share his mega-metal taste in music, so he finally has other people to talk to about that stuff. This makes us all very happy.

1. Andrew. Even with fighting his first nasty cold in quite some time and a serious fungal infection popularly known as ringworm, Andrew has had a pretty decent month. After some seizure-like headaches last month, he had a follow-up EEG which showed no new abnormalities. The headaches have improved, but he’s had some blurry vision and no one is quite sure what’s causing that. He’ll go to an eye doctor in a few weeks to rule out any eyesight issues, and if that looks good then we’ll probably point the finger at either his seizure meds or the evil steroids. Then, we’ll flip a coin and however it lands we’ll probably just do the same thing – live with it. He’s in his fifth 84-day cycle of maintenance therapy now – with about seven more to go after this one – and he’ll have his next appointment for IV chemo on Monday.

In the last 20 months, I’ve watched my boys fight for their lives in ways no child should ever have to. It’s broken my heart into tiny pieces, but their persistence, optimism, maturity, and true spirit have mended my heart many times over. Through the heartbreak, or maybe because of it, I’ve experienced a deeper sense of joy than I ever thought possible. For this – and for every second I have with Michael and Andrew – I am grateful to the ends of the earth and back.

Happy Thanksgiving everyone…

Lessons on Strength and Kryptonite

Strength. That word means something different to me now than it did awhile ago. I’m sure it’s common for people who’ve been through difficult situations to hear a lot about strength – “You are so strong” or “I don’t know how you do it” or “I could never handle that.” I’ve probably said those same words to people over the years, and I meant them sincerely. But I see things differently now. So here are my own personal lessons on strength, for what they’re worth:

• Strength can come from many different places – from faith, from family, from friends, or even from a long walk on a brisk night or a quiet moment with some cranberry vodka (hypothetically, of course). Not only is the source of strength different for every person, it can also be different for the same person from moment to moment. And that’s okay.
• Early on in this journey, a friend of ours who could unfortunately relate to our situation gave me the best advice. She said, “You are a very strong person even if some days you do not feel that way.” (Thank you again Shelly.) Strength is not a limited resource, but sometimes it’s buried pretty deep. When the walls are closing in – no matter the reason – you just need to keep digging. You always have more strength than you think you have.
• Adrenaline masquerades as strength. When Andrew was first diagnosed, and in the months following Michael’s accident, I thought I was Superman. I put on my strong face every day and never really allowed myself to truly take in the enormity of our situation. As it turns out, reality is my kryptonite.
• Not showing strength at any given moment doesn’t mean you’re not strong. It’s okay to let your defenses down sometimes – staying strong all the time is not good for the mind, the spirit, or the body. I’m just now starting to figure this out.

So there you go – my lessons on strength from the last 19 months. At this point, we’re about a month shy of being halfway through Andrew’s treatment. When I think about how far we’ve come, and how far we still have to go, my Superman alter-ego says, “Bring it on!” But, on the other hand, my kryptonite of reality knows it’s not going to be easy, and that really weighs heavily on me some days. That’s not a bad thing, though. I know now that part of having true strength is facing and accepting even the most unpleasant of realities.

The last month has been one of the hardest for Andrew since he started the maintenance phase of his treatment.  He had more pain than usual, severe headaches, and some signs that our vacation from seizures may not actually be a vacation after all.  Today he’s getting home from five very chilly days at Outdoor Lab in the mountains with his classmates and he did amazingly well all week. He’s also playing basketball on his middle school team, and it warms my heart to see him running up and down that court. At their first game, he was so proud to have scored 25 percent of the team’s points! (Not all that hard since their total on the scoreboard was only eight, but still an accomplishment in his book.)  In the midst of what seems so normal on the surface, on Monday he’ll start his 5th 84-day cycle of maintenance with IV chemo, spinal tap with chemo, and another week of steroids. On Wedneday, he’ll have a sleep-deprived EEG where we have to keep him up most of the night and then have him go through a series of tests to see if his seizure indicators have changed any. We’re hoping the results of those tests will give us some direction toward what’s causing his headaches.

Meanwhile, Michael is immersing himself in music, playing guitar at least three hours a day and starting to write his own songs. He’s very motivated by it, and it’s great to see him so happy and confident. In true Michael form, his musical obsession is far more important to him than trivial things like homework, but he’s doing well in all his classes and keeping his priorities in perspective for the most part. At conferences earlier this month, his science teacher told me that he wished all his students had the determination to succeed that Michael shows. Now that was true music to my ears.

Speaking of music, it’s time to sing Happy 65^th Birthday to my parents this week – my dad on Halloween and my mom on Nov. 4^th. Love you guys!

This slideshow requires JavaScript.

KBPI – They Really Do Rock the Rockies

Ever since Andrew’s Make-A-Wish day with Korn in July, the DJs over at KBPI here in Denver have gone above and beyond to indulge Andrew and Michael’s head-banging obsessions. I often say that the medical doctors will save our kids’ lives, and it’s programs like Make-A-Wish and many others, as well as people like the guys at KBPI, that will save their spirits.

Here are a few of the recordings of the boys on the air. HUGE thank you to Willie B, Uncle Nasty, and Matt Need at KBPI for being compassionate, caring, and well, to say it in true KBPI spirit, totally kick-ass.

Michael’s debut review of Fall Brawl / 10.27.10

Andrew’s interview in the studio about The Children’s Hospital Holiday Card Project (Huge thanks to KBPI for helping to promote this great program.)

Andrew’s “review” of the KISS show on KBPI / 07.26.10

Video of Andrew’s Make-a-Wish day with Korn (I’m including this because Willie B and the rest of the KBPI guys played a big role in making some of the magic of this day come true for Andrew.)

Hey, Cancer!

I try to stay positive, I really do. And most days – at least on the outside – I do a pretty good job. But not today. Today, I am angry. Today, I will not say “it’s not about the why, it’s about the win.” Today, I will stand on a virtual soapbox and scream, “HEY CANCER, YOU SUCK!”

Okay, screaming didn’t help. I’m still angry, and cancer still SUCKS. Andrew’s battle has been rough, and it’s robbed him of so much. It’s robbed all of us of so much. With Michael’s injury coming on the heels of Andrew’s diagnosis, I sometimes look back and wonder how we kept breathing. Yet I can deal with our story because – and this is the truly tragic part of the bigger story of cancer – I know that we are the lucky ones.

Two events in the past few weeks have broken my heart and splintered my shield of optimism. A fellow CKM (Cancer Kid Mom) received the devastating news that her son has relapsed. And one of the kids’ favorite teachers was recently diagnosed with an aggressive form of leukemia called T-Cell PLL. Two more families forced into a new war they don’t deserve, facing very challenging treatments no one should have to endure. Two more families robbed by cancer. It’s beyond not fair.

Since Andrew’s battle began, I’ve learned that the best fuel for optimism is the unwavering support offered in the darkest of times. We are so grateful to the hundreds of people who have followed our story and held the boys up in thought and prayer. To all of you – thank you for sticking with us for so long, you’ve made more of a difference than you’ll ever know. As you continue to think of Andrew and Michael, please also send your thoughts and prayers to our friends Joey and John and their families – I know we will be.

While my shield of optimism has taken a hard hit lately, I still have a pretty strong grip on it. I believe both these families will prevail, I truly do. I also believe that someday humanity will win the war against cancer… someday. Until then, the battles will continue. Until then, all those prevailing wins will continue to be more important than the haunting whys. Until then, cancer will continue to SUCK and, for what it’s worth, a piece of me will continue to be angry.

I know I seem pretty bitter today, and I’m sorry for that. But I’m pretty sure that I will start to feel better soon. Why? Because another thing I’ve learned on this journey is that hope trumps anger almost any day of the week.

This slideshow requires JavaScript.

Michael Update: Since learning that sports are probably out of the picture for awhile longer – or forever – Michael is back on his guitar for hours each day. It’s been great to see him so excited as he tries to figure out how to play songs from his favorite bands and work on his own sounds. His first week of high school went well, and we’re so proud of his enthusiasm and positive attitude.

Andrew Update: After a little more than a week of middle school, Andrew has officially attended more full days of school this year than he did last year. He’s also back to a lot of other activities, and it’s wonderful to see him doing things we so easily took for granted 18 months ago. (I’m pretty sure I was the only mom holding back tears at his first flag football game of the season, but I’m okay with that.)

Updated! This Summer from Head (banging) to Toe (infection)

Update2: Video of Andrew’s Make-a-Wish day with Korn

Update: Andrew’s “review” of the KISS show on KBPI / 07.26.10

My head-banging days were over years ago, but in the last week I’ve seen Rob Zombie, Korn, and KISS. From what I understand from those around me, all the shows were great. But here’s my honest assessment — Rob Zombie is a total freak, which I suppose he would take as a compliment. Korn was amazing, but for me that was mostly just because of all the wonderful things that happened for the boys leading up to the actual show. And all I can say about KISS is that I hope I have that much energy when I’m 60-ish.

Andrew’s Make-a-Wish adventure to meet Korn turned out wonderfully for him – more than he ever wished for, I think. Michael also had an amazing day meeting the band members and seeing how these big shows are run behind the scenes. Make-a-Wish is such a remarkable organization that truly makes a life-changing difference for so many kids. Our MAW escort for the day, Truman, was very cool and we really enjoyed our day with him. We are so appreciative of everyone at MAW who made this day possible for Andrew.

We’re also very grateful to the band members themselves, who turned out to be pretty normal and very nice guys behind their dreadlocks, tattoos, and frightful music. Most are dads who showed true compassion and caring for Andrew’s battle. I was surprised to see that they aren’t shy about expressing their thoughts against drug use and other bad habits stereo-typical of that rock band scene. One even talked to the kids about his personal fight to overcome addiction and the important role his renewed Christian faith now plays in his life. Wow!

The DJs at our local radio station were also a huge part of our day, and truly made Andrew’s wish come true when they pulled some strings to get him a little face-time with the band’s lead singer, Jonathan Davis. This led to an invitation for Andrew, Mike, and Michael to watch the concert from the stage, and Jonathan Davis personally gave Andrew his signature jacket as a souvenir. Very cool! Overall, Andrew had an amazing day that I know will help him face his remaining two years of treatment with renewed strength.

For the KISS show, we traded stage-level seats for nose-bleeds, but everyone still had a knee-slappin’ good time at Cheyenne Frontier Days. Andrew’s counts had gone down significantly, but I’m glad we decided to go anyway. When we got home, Andrew’s toe infection from a few weeks ago returned in full force, so we spent Saturday afternoon at the hospital for IV antibiotics. He’s also started another course of stronger oral antibiotics that we hope will do the trick. Just another reminder that although Andrew no longer looks sick and most days doesn’t act sick at all, he’s still a boy with virtually no immune system and our top priority needs to be to do all we can to help him continue this fight with everything he’s got. I often have a tough time finding that balance between keeping him safe and keeping him sane, but I’ll continue to walk that tight-rope day by day.

So now we have four weeks left of summer before Michael starts high school and Andrew starts middle school. If I could make a wish, it would simply be that we can sail through these weeks – and the next two years – with more figurative rock star moments and minimal ER visits. That’s it, that’s all I want. (But if a genie wanted to tell me next week’s lotto numbers, I wouldn’t be opposed….)

Here are a few pics from the shows – we can’t post pics of the Korn band members, so forgive my creative cropping.

Roller Coasters and Rock Stars

“Please stand behind the yellow line. Both feet all the way behind the yellow line.” Those mechanical words of caution from a zit-faced amusement park worker on the other side of the roller coaster tracks let you know that it was just about your turn to jump on The Twister, Denver’s rickety old-school wooden roller coaster that I absolutely loved as a kid. I loved the speed, I loved the twists, I loved the tunnel, and more than anything else, I loved the hills that made you float out of your seat just enough to feel like you were about to fly.

As much as I loved The Twister, though, the analogy that life can sometimes be like a roller coaster was lost on me for years. But I totally get it now. We crossed that proverbial yellow line a year ago today – July 17, 2009, the day of Michael’s accident. The first few days, as he lay comatose fighting for his life, were like climbing that first big hill. I knew that something big was about to happen – something really big – but I didn’t know whether it would be good or bad, or how long it would take us to get there. I was scared, beyond scared. Then, he woke up, and we flew down that first hill with more elation than I knew I had in me. We were flying on hope and joy, oblivious to the many more twists, tunnels, climbs, and plunges that this ride had in store for us.

Early on, the doctors told us that the majority of Michael’s healing would happen in the first year, and wherever he was in his recovery at that magical one-year mark is where he’d likely be for the rest of his life. So today is a big day. Michael has had all his “one-year-post-trauma” appointments, and the news from his team was… well, I don’t know… neutral. It wasn’t bad, but it wasn’t good either. His MRI showed “permanent tissue damage” caused by the pooling of blood on his brain after the accident. We expected this. A second opinion with a different nerve surgeon delivered similar lackluster news – his facial paralyis is about 70% recovered, an amazing recovery as far as these things go, but that’s as good as it will likely get. We expected this, too. He was released to do most activities, but no contact sports. This was a little disappointing for him, but it was no big surprise. (And, frankly, it’s a huge comfort to me. I can’t wait to go on a family bike ride again, but the thought of him going helmet to helmet in a football game was really making me woozy.)

So… in short, what we have right now is what we’ll probably always have. That might sound a little dreary, but I don’t see it that way. What we have is remarkable. When you look at where we were a year ago, what we have is miraculous. Michael may still have some challenges to deal with when it comes to a few things like memory or balance, but really – in this day and age, how important is it to immediately know your multiplication tables or be able to run backward? Not very important at all, at least not in my book. What is important is what makes Michael, Michael. His sense of humor is fully recovered. His creativity is fully recovered. His spirit is fully recovered – scratch that, his spirit is stronger than ever.

I know that I would have been proud of Michael had we never buckled in to this roller coaster ride, but I never knew I could be this proud. Michael didn’t ask for this ride, but he faced it head-on. He pushed through the scary dips, the frustrating climbs, and the mind-numbing tunnels of darkness with an optimism and perspective we need more of in this world. As we pull in to that flat piece of track just before we stop to get off this ride, I know that Michael’s roller coaster recovery has shaped his life in positive and inspirational ways. I am grateful for that. Every day since July 17, 2009, I have been grateful that we could ride this ride, because even with all its challenges, having Michael here with us is the only thing that really matters. And not only is Michael here, he’s here as a total rock star of brain injury recovery held up by an amazing fan club – our heartfelt thanks go out to everyone who has supported him and prayed for him in the past year.

Speaking of rock stars and roller coasters, Andrew continues to fly down his own hills, arms up in the air in true Andrew style. He’s in his sixteenth month of treatment and his ninth month of Maintenance therapy for the evil that is childhood leukemia, with a little less than two years still to go. While it’s not a completely smooth ride these days, it has leveled out a lot. His counts have been on the low end of stable since April, and we’re getting used to the routine of daily and weekly chemo pills and monthly trips to the clinic for IV chemo and spinal taps. His steroid week is our dark tunnel every month, but we manage to come out the other side not much worse for wear. Today Andrew is closer to 12 than he is to 11, and his half-birthday gives us all another reason to be grateful for July 17, 2010. Tomorrow, we’ll all get to meet some real-life rock stars as the Make-A-Wish Foundation is sending us off to a meet-and-greet with the band Korn, followed by what I’m sure will be a very loud and very inappropriate concert here in Denver. (Not my idea of a dream-come-true, but it was Andrew’s wish, so I’m excited for him. Earplugs are packed, leaving judgment at the door.)

As for me, I’m done with scary roller coasters, thank you very much. Of course I’ll still ride them when I need to, but I’d much rather go stand in line for the Ferris wheel. I think the view will be much better from up there.

Related posts:

• Michael Update
• He’s Back
• Party On
• Freak on a Leash

Firsts and Lasts

Like most moms, the “firsts” hold a special place in my heart. I’ve never been overly gushy, but I’ve done my mom-duty by tracking their first smiles, first foods, first words, first steps. As they continued to grow, the firsts kept coming… first day of school, first sleepover, first soccer game, first dance, and so on. The firsts are more than just developmental milestones, they’re like the spaces on the curvy multi-colored pathway of the Life game board. Each one – whether it came easily or not – is an important step in the journey. Sometimes I see myself as a spectator of my kids’ personal life journeys, with my view of their paths becoming more distant as they grow older. In the beginning, I didn’t miss a thing – every first was significant. As their independence flourished, I withdrew, still watching and celebrating, but with less and less fuss as time went on. 

Andrew and Michael’s life journeys have taken detours full of too many unpleasant firsts. First chemo treatment, first spinal tap, first oxycodone. First flight-for-life ride, first skull fracture, first coma. These weren’t firsts to celebrate, but they held as much significance as those written in their baby books. As their journeys bring them closer to full recovery every day, we’re finding new firsts to celebrate. On Friday, Andrew had his first full day of school since he was diagnosed (and his first behavioral “think sheet” of fifth grade). Michael drove his first go-cart since his accident, a huge victory for him. Andrew went on his first bike ride with his buddies, and he didn’t even have trouble keeping up.

All these firsts got me thinking about lasts. I wish I would have recognized those when they were happening over the years. When was the last time they fell asleep in my arms, asked me to push them on a swing, or held my hand as we walked? Had I known when those lasts were happening, would I have cherished them more?

Whether we recognize them or not, these are the memories that make up this thing called motherhood – a series of firsts and lasts that define our lives and pave the life paths our children travel. I’m grateful for the front-row seat I have for Michael and Andrew, and I know I wouldn’t be standing here as strongly without my mom, Mike’s mom, and the many other moms who have supported me in the stands. Happy Mother’s Day to you all! 

Party Every Day

I’m trying something new. In fact, I’m trying something revolutionary, at least for me. I’ve decided that it’s time we all started living again. I’ve decided that we will no longer be held hostage by fears and what-ifs. I’ve decided to look ahead and see the things we can do, instead of the things we can’t (or shouldn’t). To put myself to the test of living up to this new philosophy, I even purchased tickets in advance to a show I know we may not be able to attend.

Don’t worry, though, I’m not going crazy. I’m starting small… baby steps, but it’s progress. After all, the old me would’ve said Cheyenne, Wyoming, was too far from the hospital, a concert was too big of a crowd, there would be too many germs at a knee-slappin’ rodeo. But the new me took over and bought those tickets to see KISS at Cheyenne Frontier Days anyway. The boys (all three of them) are shocked I did it, but excited beyond words to see their favorite band.

I’m proud of myself, but not all that excited for the actual event. I’m fairly sure that I’m much more entertained by the idea that “the greatest band in show business” is now playing at the gratified county fair that is Cheyenne Frontier Days than I will be by the actual show. Maybe I’ll just take earplugs and a good book. But either way – I took the plunge and bought the tickets, and that alone warrants some hysterical screaming and overdone pyrotechnics.

Andrew finished his second 84-day cycle of Maintenance treatment yesterday. Last week, he went to school every day. Not all day, but still a very good experience for him (and me!). He didn't get a spinal tap in yesterday's treatment, so he's feeling pretty good. We're dreading the next week of steroids, but hoping it won't be too bad.

Michael is feeling pretty good, too. He got his braces on a few weeks ago, and this Monday he'll leave for a week in Washington DC with his 8th grade class. He's very excited, and I'm only slightly nervous. It's hard to let him go, but I know this will be an amazing experience for him.