Ugly Like Me...

Angels up there, diamonds down here. Michael and Krissy.

 

 

 

 

Krissy just called me. For a brief moment I actually contemplated ignoring the call. I thought maybe If I just ignored the rings that the PURPOSE of it might go away with it. I knew what this call meant. I answered it anyway. I answered with a fragile voice. Barely a whisper of a hello. I knew what was coming.

Sometimes it is easier to be low so when the blow makes contact, it isn’t that much of a fall. And then she said it, “As of 11:02 our Munchie has gone to heaven.He was in our arms. It was peaceful.” I fell with the greatest of impact despite my attempt. Deepest of depths. I am falling still.

 I don’t have the right the to cry. This isn’t about me. This is about them and her and her pain. And I couldn’t, even with this knowledge, hold back the sobs. Moments like these you must refrain from sobbing hysterics because the person who is in the MOST unfathomable pain, the one who this IS about, may feel the need to console you. I was amazed and honored she wanted to tell me in person. Amidst this great tragedy, she thought of me. I dare not cry. I tried my hardest and I failed.

Krissy sounded amazingly even and good. She was admittedly in shock. She was so kind and comforting as I fumbled for the words to say. Maybe when she got home it would hit her. What would she do now? Every waking hour was consumed by this battle for Mikey. On her end of the phone, she was working it out. Trying to understand. Thinking aloud. On mine, I was trying to muffle the cries, searching for anything in my classroom to act as a makeshift tissue to contain the tears.

I didn’t give her any great hypothesis into why she seemed so graceful, but maybe something in me  knows why Krissy is still standing and so seemingly OK. While the mother in me knows I cannot fathom such pain,  the observer in me has some hunches as to how she might be 'OK' right now. Yes, I agree some of it is shock, but a huge part of this is habit. It has been almost two years of her refusing to fall. She does not know how to buckle.

Her life has exemplified otherworldly unrelenting strength for TWO years. These weren’t years that were joyous, where the time just flew by. These were years of constant anxiety. Minute to minute. White knuckling it. Sleepless nights. Tick. Tock. Will he. Won’t he. Make it? In children’s cancer years, two years is a lifetime.

  That, and Joey. She will not fall for his sake. I haven’t ‘known’ Krissy since grammar school. Facebook brought us back together. That is us at Caterina (braids) Ponteraro's birthday party in 3rdish grade. Krissy is in the pink sweater on the left. Her twin Karyn is behind her. I'm the Punky Brewster look alike on the right in grey.

Our 20 year reunion was at Beth Israel Hospital in Newark. The children’s ward. Munchkins and transformers and Mikey. Maybe I don’t know Krissy as well or as long as some, but if they say a person’s true character is how they handle themselves under the greatest of pressure. I know her well. I entered at a time of insane turmoil. She let me in. She didn’t turn to dirt or dust. I can rightfully say she was diamonds.

Krissy is the mom we all hope to be and yet pray to never have to be, in that way. Most of us would crumble. She is diamonds and smiling. She is Michael and Joey. She is large quantities of coffee. She is loving and snuggling. She is diamonds and Legos. She will always be Joey and Mikey, even if they are separated for now.

Joey doesn’t know yet. And Joey and Mikey were inseparable. They had a closeness that wasn't determined by the proximity of their years. It was written in the stars. Pray for Joey. I will spend my life praying for them all and working for Team Brothers, a nonprofit that Krissy started with her dear friend Kathie Coates to support families that are threatened by Leukemia.

It was monsooning outside today. To the point where I thought someone was banging on my classroom window. It was dark. After the news, all of this felt comforting to me. Me and mother nature cried it out.

And then, the sun came out. It was blinding. It caught my attention. I stopped my lecture and walked to the window. A hole in sky. The sun. The heavens opened up. I stuck my head out and cried. Then laughed at what this meant. I did that messy mix of both again, ‘Craughing’, because I believe in angels and heaven. I believe in signs. I tried to capture with my camera and couldn’t.

My heart is beyond broken. I drove home in silence. I would do the sign of the cross at stoplights and pray in between. Rays of light were coming down. Bending on the buildings and the in betweens. Again, it was Mikey. It was brilliant. As broken as I felt, for the first time in a long time I felt unafraid.

For the last year, since my diagnosis and all this talk of wheelchairs and spinal chord injuries, I have been incredibly afraid. Kind of like the ticking that Krissy must have felt. Anxiously aware of every minute and questioning if it was a countdown or not.

I stare at my children constantly and there is always this layer of fear. It is behind every happy moment. What will I be here for? Is something else wrong with me? I stare at these beautiful momets and try to capture them. To hold them still. Impossible.

I think people who are diagnosed with chronic illnesses feel this way-like hypochondriacs. For a long time you knew something was wrong. They said there wasn't. Long story short, you were right. After that, every little ache is questioned. I'm always dancing between two worlds. Like the edge of the ocean where it meets the beach. Skipping and playing chicken with it. Holding hands with my family. But aware of the possibility I might be swept away.

I shed that layer of fear today. Mikey did something to me. You know how many people question God when tragedies strike little kids?  How could God let this happen? Something in me takes this as proof that there is heaven. There is no way he is gone. No way is that little light DONE. No fucking way. I feel so much lighter now. So much stronger because of him. I am not one for organized religion. I have a very innate, private relationship with God. On my Facebook wall our relationship status reads, "It's Complicated". But it is here, nonetheless, and I feel it now more than ever because of Mikey.

I am forever in debt to that little light of mine. Your victory Mikey is MY victory. Thank you. I will pay it forward, I promise. Wait and see.

 

 

 

 

 

 

 

 

 

 

Babies Leave You Beeping

There’s a term in running reserved for when you are dragging ass. It is a bit more polite than “dragging ass”. It is called BONKING. Bonking is when you know you can easily run 14 miles and you run out of steam at mile three. That is when you think, “Wth, I am at mile 3. Why am I bonking?”

I haven’t run in a long time. I’ve been bonking just the same. Honestly though, for the  past three weeks a lot less bonkage. The Tysabri worked a lot more than I thought it would for the first time. What an awesome, unexpected surprise. I’m used to shitty surprises like finding my car window smashed in on a Sunday morning. Thank you Tysabri. Screw you 60 mph winds that smashed my window.

I am a week away from the next infusion and I am bonking HARD. I have hit a wall. Again, no running, but in the marathon that is my hectic life-I have hit a wall. Mile 20 so to speak. One thing fellow Tysabri comrades told me was that it fades. Usually a week before the next infusion your body bonks. Crushing fatigue. I’m learning, this is, in fact, TRUTH. I’m so insanely tired.

Crushing Fatigue. How I wish I could bottle this up and give to my friends. I mean it more in an “Eww, taste this milk! Does this taste funny to you?” kind of way. Just so people would get what it feels like to have to push through something this extreme. Fatigue. That word denotes sleep, peaceful transitioning from the world of awake to lovely little dimly lit dream worlds. It is too pretty a word for this. I like coupling it with the word CRUSHING. It fits. Changes it from lovely little dream world to more of a body slam. By Hulk Hogan. Yes that is more fitting.

Side note. Fatigue and Flu need new terminology assigned to properly convey the wrath that is at their core. The flu is much too violent for FLU. Wretched vomiting, and spinning. Bodily fluids escaping all orifices of your body. Flu just doesn't convey the sickness. It should be flu CANCER.

OK, so bonking. I can’t bonk.It is almost 4 pm and Tony just called me to tell me he made an emergency appointment for Meatball. His fever and coughing are out of control. I have to take him to the doctor tonight at 5:15 with Zoe in tow. No time to bonk. Going to the doctors with two little ones is very physical. Especially after work. Especially when you have a chronic illness. Just the thought of it is exhausting.

Fast forward. I went to the doctors. I asked her to take me before 5:15 because I myself am barely hanging on. So she took me at 4:20. In the waiting room and AJ starts vomitting everywhere. All over himself. Down my shirt. All over my pants. Purse. And the two 20 somethings that work there are just staring at me. Zoe is crying. I can't put AJ down because he is hysterical and umm VOMITTING. I dropped the papers. My keys. My bag. Them-just staring. SO I ask for help. I don't know--a tissue maybe? That would be a kind gesture. A, "Can I help you? A cocktail perhaps? " would have been comforting. So finally, I ask for help. "There's a bathroom at the end of the hallway." Great.

Forty minutes later we are seen. She says swine pneumonia maybe? His ears were so red she said they were borederline perforated. 102.7 fever. She brings in a nebulizer and puts it on the table. Never showing me what to do. She leaves the room with these parting words, "If you don't get him to use that I'm going to have to send him to the emergency room." A threat. After 15 minutes of wrestling and fumbling I gave up.

She came back into the room and expressed her disappointment in my nebulizing skills. So I went nuts. Don't you go into pediatrics because you have baby finesse? Should you whisper to them or something? Don't you go into pediatrics because you are capable in the other areas that we laymothers aren't? Like catheters and shots and nebulizers? So I left and I met my husband at home, cleaned off the baby and sent them to the hospital. They are still there-almost 4 hours later.

I know of all the things to worry about I shouldn't worry about this, BUT Tony missed his run tonight. Ugh. The Boston Marathon is coming. Yaay, but YIKES! April 18^th Tony is running for the New England Chapter of the MS Society. He’s raised almost $8000 to date. We kind of thought THAT would be the hard part. It wasn't. Our friends and strangers stepped up as soon as we announced T's mission. A lovely WRONG on our part. The training, however, has been tough. Between all the bouts of sick in our household and blizzards, his training has  totally suffered.

My friend Robyn told me not to worry, “You and Tony have a way of pulling marathons out of your butts.” I quickly informed her that gone are the days where we pull anything out of our arses. We  are old, now we don't pull tricks out of our bums as much as we pull muscles. In the strangest of places.

Zoe put on Avril Lavigne’s new song What The Hell last night and told me we were going to have a dance off. I attempted the Kid N Play (Do you remember that move?) with her stuffed animal and pulled a muscle in my calf. I kid you not. Tony is just like me. That aside, he is on a serious running schedule now to make sure he covers the 26.2 with all limbs and major organs in tact. 

Remember how I said Babies Leave You Bleeding. I have a new twist on this. Babies Leave You Bonking. As does age. And sometimes chronic illnesses. AJ, when I clicked the car alarm on as we were walking into his appointment, heard the beep and goes, "BEEP!" Giggles. "Beep!" He was laughing so hard. 102.7 fever. Pneumonia. BEEP. I kept thinking about this as I was struggling throughtout that appointment. Babies Leave You Bleeding. Babies Leaving You Bonking. But Babies Leave You Beeping. If I were him, I'd be bleeping (not beeping) to cover up the curse words. I'm so cranky when I'm sick. He was making little baby jokes and beeping.

I BLEEPING love my babies. Even when I'm bonking. Beep.

 

My victory is your victory?

Illness is the night-side of life, a more onerous citizenship.Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

                                                                                        -Susan Sontag

I managed to get my gimpy butt to work today; probably not the best idea health wise. But monetarily wise, I only had six sick days and they’ve been used up. After that my check is garnished per day. So here I am. Here, but just as absent.

My first Tysabri infusion is today. My lovely coworker Michelle is giving up her prep, once a month, so I can leave early for my infusions and not be stressed over being docked pay. Times like these, you realize who really shows up. Like people you would never expect to, surprise you. And the ones you would think would, don't. And that's ok. Because no one can get someone else's sick. Maybe that is why I'm always  surprised that anyone does? I am inundated with love. Lovely.

I just had to get honest with myself and call my doctor. I don’t think you are supposed to take the Tysabri when your immunity is low. I kind of didn’t want to tell Dr. A that because I really need the infusion. Waiting another month in my current condition doesn’t seem like an option. They are only offered on these predetermined dates, once a month. Someone said it might take 2-3 infusions before I see any improvements. I refuse to do another SoluMedrol hookup at home. The roids don’t work and stopping them is awful.

So I had my mental tantrum, “I’m not fricking telling him I had the flu. Naaah. No naaah. No YOU. Faaak. OK, I’m calling him,” I finally called. He said, “No worries, we’ll skip it.” I started bawling. Long story short, I scared the crap out of him and I’m going in for it at 2 pm. Wonderful. Wait. This is one of those cases where I’m not totally sure if I won the battle. What if my body can’t handle the infusion? The infusion consists of infusing my body with more antibodies.

Tysabri is unlike other MS treatments in that it isn’t interferon. It is an antibody. My body is already releasing its own antibodies and attacking itself. The idea is that once a month, I get infused with the Tysabri antibody and my body attacks THAT instead of ME. Sounds good to me and better than hookworm therapy. Ew. Also, my results came back negative for the JC Virus, which means for now, I am in safest category, the most likely NOT to die from PML and treatment. I was hoping for Most Likely to  Succeed or Prettiest Eyes, but I will take it. 

Fast forward eight hours. Infusion is over. It wasn’t so bad, save for the I’m Kind of a Big Deal guy next to me. I turned my back to him. His reaction was to wheel his IV bum over to me to SHOW me on his phone how much money he had in his bank account. $27,994. I almost threw up on his loafers. Haa. Money. When people are sick the last thing that impresses them is money. Show me a really clean MRI of your brain and your spine and I will drool. But, money? So, weak. I wasn’t impressed with that stuff when I was well, certainly not impressed by it now. I wanted to see proof of heaven. Something BIG and other worldly.

So creepy IV stalker guy wouldn’t stop, so I had to get assertive with him. Men would call it bitchy. Streisand would crown me assertive.  I'm a HUGE Streisand fan, so I'm sticking with assertive. In so many words, I said please don’t talk to me. He looked like I stole his puppy. Ugh. So I told him since I was going to sleep, he could set a Pandora station on my ipad and listen. Faint smile. Just handed him his puppy back. Turns up volume. Freaking KESHA is blasting on my ipad. Next week I bring headphones. But I’m not going to put on any music. I’m going to FAKE listen so he won’t talk to me.

It is funny what you hold dear when everything is fine and you are well. Such a stark contrast to what you treasure when you aren’t. Everything shifts. Money is like sand. Complaining how you are unhappy in your current lot in life seems frivolous. It shifts. BUT, the tiny teeny sweet gestures are so huge. They are little whispers, “I understand. I get you. I got it. It’s ok. Rest.” I think when you are sick you already feel sent out to sea, out THERE on some island of isolation. BUT these little whispers reminded me that I’m not alone. They reel me back to shore.

For the record, on the grand scale of sick, I don’t think of myself as THAT sick. I have friends who have gone through or are going through worse. You would think that they would laugh at me for ever having my WAAH moments, but instead they are the first to “show up”. They never minimize my sick.

I think I feel a notch better than before my infusion. Super tired. Going to bed. Totally cheesy, I keep repeating this, but I have to say again. Thanks so much for the support. My family and friends and coworkers and even strangers really “showed up” for me these past few weeks. People that were really struggling put their crap aside to check on me. Johnny and LiLi sent my daughter and me edible arrangements. My friend (with cancer) offered to sit through 3 hours of infusion with me despite his own illness. Thank you John. Prayers. Facebook pokes lol. BTW, we need to discuss the phenomena that is the Facebook POKE one day.

My friend Cathy Ann called me from Shop Rite during the ice storm to shop for me and she just had her third child. My bosses Greg and Donna who made me lay down. Even little gestures by my coworkers today. They would rub my back when they walked by me. Texts from friends asking me if I’m drinking fluids. There are fifty more incidents I could mention off the top of my head, but am too tired to write. Thank you.

And my poor husband, who is now vomiting after watching Zoe crack her head open, get stitches, his wife go to ER, Weezie sent to animal hospital, then his wife wake up with flu (he stayed with me in the bathroom as I disrobed and puked, super sexy), then his little boy wake up with flu-all in a four day span. I promise promise I will send you away for a sleepcation soon. And while you are away, I will win one of those home decorating contests that will come and design a man cave for you in our house.

AND I will know all the answers to the BONUS questions they ask about you (If your house were on fire, what is the one thing your husband would save, wife and children not included?). I’ll win all the REALLY awesome extra good stuff, like the pool table and the dartboard. No not that, but whatever else dudes treasure. Fish tanks. You know. It will be ready when you come home. We’ll all yell surprise! It’s going to be aaaawesome.

My friend the Rev. Molly just finished chemo for lung cancer. She wrote a blog post Your Victory is My Victory during chemo about how she wanted to be like Sara, the woman who cleans her house. Tiny in stature. Devout Christian. She would grab Molly's shoulders and say Molly, "Your victory is my victory."  Molly wrote about this as being the heart of Christianity and one of its deepest truths. I've come the closest to God probably since EVER in the past five months by reading the nose-ringed, ever graceful, Rev. Molly's blogs during her chemo treatments.

Another definition of grace has unraveled and exposed itself to me. Grace is how you glorify your God in the moments of deepest, darkest truths. It is a light (other worldly) that doesn't dim or die, or waiver, in that stormy place, when others might deem it unmerited. I read and I watched Molly. She was nothing but LIGHT. Graceful.

This is a sticky note Sara, the devout cleaning lady left for Molly.

 

 

 

 

 

 

 

 

I've not so gracefully stumbled around the Earth, pondering grace, and repeating, "Your victory is my victory." Molly. Mikey. John. Michaela. I whisper it, almost like a prayer, out into the universe for those who need it.  And these past few weeks, these words have been turned inside out. For me. In reverse. My victory seems to be your victory. It shuts me up. It baffles me. I shall not complain. Thank you.