Cream Cheese on Crackers for Dinner

Cream cheese on crackers for dinner.  That just happened.  Now I'm watching Gavin eat in front of the TV, eyes wide with satisfaction over winning tonight's dinner battle with barely a fight.  I rattled off a number of options for dinner tonight, he told me "crackers with cream cheese," I said "no," he said "yes," I said, "ok."  Then he said "in front of the TV!"  I said, "no," he said, "yes," I said, "ok."  And that was that. As I put the tub of cream cheese back in the fridge, I took a giant scoop and licked it off my finger.  I poured a big glass of wine and here we are. 

Gavin and I truly had a good day today, and I really needed it.  Lou went down to Long Island to celebrate the Bar Mitzvah of our friends' son while I was supposed to be at a baby shower, but I just didn't have it in me.  I haven't been feeling very social, so I opted to stay home with Gavin instead.  First thing in the morning we went to gymnastics and on the way home he said, "Mommy, did you have your coffee today?  Maybe you should get one."  He knows how much I love coffee, and I told him I wanted to stop on my way to class but we were running too late.  My big boy was taking good care of me.  Then he said, "I can't wait to get home today so I can play with you all day and night, and watch movies and eat snacks!" 

I believe that moment right there determined the kind of day I would have.  Which turned out to be a nice, easy day at home.  And days at home are so rarely nice and easy for me.  What a treat.  I enjoyed Gavin.  I folded laundry.  We made a fort.  We played with silly string (by the way, I clearly underestimated the mess I would be faced with afterward.  I should have learned from the various other times I let my kids loose with silly string around the house. #somepeopleneverlearn.)

Even Lou gets down with the silly string

Last night I didn't sleep well at all.  My mind was rolling while I reflected on the previous day.  Lou and I took Gavin to our friend's house for a movie and they have four young boys.  I was reminded how very easy our life is these days, compared to our friends' buzzing, busy household.  Not easy emotionally - just the opposite, of course - but physically easy.  Gavin is a big boy now.  He can dress himself, although he rarely wants to.  He gets himself a snack and juicebox from the pantry if I'm busy.  He attends a full day of preschool every day without complaint.  He plays so nicely by himself for hours.  He is a whiz on the i-pad.  He is growing up and all I am left with is the wonder.

How and when did he get so big?
Where did my baby go?
In this year of fog and sad haze, how did he even manage to keep growing?

Everything in this life without Ty feels wrong.  When we pile into the car to go somewhere as a family, his absence is so very heavy.  When we take Gavin somewhere special, like a birthday party, the park or even the toy store, we watch him having fun while exchanging warm glances that mean "I wish he was here," or, "Ty would have loved that."  When we go to sleep at night and when we wake up in the morning, Ty is the first person we think of... the first person we look for.  Every time I see two brothers together, my heart hurts. 

I feel him with me every day.  I know he is still here - that he never really "left" - and while that brings me comfort it certainly doesn't help me miss him any less. 

My day-to-day life went from 100% stress, fear, physical exhaustion and 24-7 parenting, to a very simple routine of school/work, go home, dinner/bath/bed.  Sometimes Lou and I even watch TV at night, a luxury that didn't exist for years.  I hate it.  It feels so wrong.  I want to worry about Ty's nutrition and blood counts.  I want my conversations with Lou to focus on whether or not Ty pooped today, if we think his mobility is improving at all, if he had any headaches today, and whether or not the latest tweak to his daily medication is helping at all.  When I am heading south on 684, I am often tempted to keep driving right down to the hospital.  To pull into the parking garage, say "good morning" to the attendants that I recognize so well, to walk the underground hallway to the elevator so I can imagine Ty's giggles when we pretended to race up the ramp.  "I'm beating yoooouuuu!"  To see Mary, the only nurse who he was never afraid of (they were all such wonderful nurses, but that Mary had extra special magic powers).  To visit the gift shop where that one special lady always swooned over Ty.  I wonder if she knows he died. 

I miss the familiar faces of the kids and their families, and I wonder about so many of them.  I just want my life back - even though it was a life no one would envy - that's because no one can understand what a special place the ninth floor is, and how lucky I am to have had Ty in my life regardless of how short my time with him was. 

We are doing well, and there is a huge gift that Ty left me and that is my new job.  I absolutely love going to work at the foundation every day.  In my previous life, I worked for the income. Of course I felt accomplished and I had pride in a job well-done, but I never, ever loved my job.  I never even really liked my job!  It occurred to me that I should look for a more fulfilling career, and I often thought about working for a nonprofit, but it took me a long time until I made a comfortable salary where I could buy the shoes if I wanted to, and the thought of compromising my income for a more noble career prevented me from pursuing a different job.  How wrong I was!  I gave up my career and my income to work at my own nonprofit, and I couldn't be happier.  When I used to count the days until my next vacation, now I actually miss the office on my days off. 

Most of life is spent working and sleeping, with a few hours in between to make dinner, clean the house and spend time with my family.  I feel so blessed to finally spend that time working on something that makes me feel good.  That honors Ty.  That enables my son's legacy to continue inspiring others and make a difference in the world.  I firmly believe that he still has work to do, and I am helping him carry on with his mission this side of heaven.  Me, Lou and the dozens of wonderful, beautiful, committed volunteers who work alongside us. 

IN FACT, BECAUSE OF TY A LIFE MAY BE SAVED
You may have already seen this exciting news on the foundation Facebook page (and if you don't "like" us, please do! www.facebook.com/thelittlefighter)... but we received the wonderful news that our friends at Love Hope Strength found a bone marrow match at our first inaugural Mess Fest back in August.

We were thrilled to have them set up a booth at the event, which was attended by approximately 2,000 people!  All day long, volunteers tirelessly swabbed the cheeks of hundreds of willing attendees in the hopes that someone would be a bone marrow match for a person battling cancer in need of a transplant.  As it turns out, one of our attendees was, indeed, a match!  A life may be saved thanks to the most unselfish acts of others.  I can't even tell you how excited this news makes me. 

I sent away for a kit years ago, and it is the easiest thing to do.  If you are interested in registering, visit www.deletebloodcancer.org for information on how to sign-up.  It is 100% free through this site, they ask only for an optional donation to cover the cost of the test.  Like I said, that is optional.   It is more important that they build the registry and find a match so if you can't cover the cost I highly encourage you to register for a swab kit regardless!  What matters is that these cheek swabs are so simple, and they are saving lives.  CLICK HERE for helpful answers to the most common questions about cheek swabbing and bone marrow transplants.

UPDATE ON SUPERMAX
Max is home from his recent surgery, with the same scar Ty had.  He reminds me so very much of my baby.  Max is so incredible.  We are thrilled that he is recovering well, but his parents were told that he needs to begin treatment again.  Please send your thoughts and prayers his way.  He is a fierce cancer fighting ninja, but your support always helps to empower these kids even more. 

 

Out of exhausted silence on the way home from the hospital today SuperMax asked me, "Mommy, wouldn't it be awesome if they could stop cancer?" He then quickly followed up before I could respond and said "it would be even better actually if cancer never existed." Yes, my sweet boy, that would be the best.  - SuperMax's Super Momma