ORANGE OUT!

Orange is my new favorite color! THANK YOU to all of you amazing students, families, and staff members who came out to the ORANGE OUT basketball game last night. I even had former students come home from college to show their support... I love and miss every single one of you.

KATELYN DRAKE: The girl responsible for all of this... I can never thank you enough. I can never express my gratitude for your giving and selfless heart. Your future in nonprofit charity work is going to change the world; I just know it. I'm excited to witness how you will improve our future (you already have).

Making beautiful memories is my favorite pastime, and one surpassed all of my best expectations last night. As Kirt Brown announced Gideon's name at halftime to come draw the winning tickets (for ICE watches donated by Medawar Jewelers), the crowd on both sides of the court stood up cheering for Gideon. He had a mask on, but the boy was beaming.

As we crossed the court, he said to me, "Are all of these people wearing orange because they want no more Leukemia sharks?"

"Yes, Gideon," I answered over the cheers. I have no idea how I didn't lose it since tears were welling up in my eyes.

"That's good, mommy! Nemo is orange," is how he answered.

I'm locking that one in my heart forever. His simplistic and staggering view of this world makes me want to wear his lens of life on my eyes until my last breath.

My list

Things I have recently discovered:

1. I have a hard time ripping myself away from the fantasy of a musical. The day after said event, I dress up like one of the characters and sing instead of talk. Not kidding. Every single form of communication with my boys has been altered lyrics to the tune of "Defying Gravity" today (only at home, though...so I guess I still have a fingertip in reality...). I kid you not. Also, I'd like to thank my closet for being so very sequin-stocked. Good thing my boys think I am famous. They really don't mind, and Gideon even cut out flowers to throw at my feet. Mmmmmm... This needs to last.

2. When I was told Gideon's counts weren't high enough to get more chemo today (his white blood cells are too scarce), it kinda felt like I failed a major exam. An exam I really, really studied for, too. I know it's not anyone's fault or that I truly failed, it's just that sinking feeling in that moment. Thursday we will try again with the chemo. Thank goodness for retakes.

3. I used to swat my boys' fingers away when they pointed at anyone with a disability, or an enormous mole on their nose, or someone wearing something odd. Then I'd hiss, "SHHHHH!" and almost cover their mouths. Today I witnessed a mom do that when her little one pointed at Gideon and yelled, "WHERE IS THAT KID'S HAIR?" Gideon and I were at the foodcourt getting some grub at the hospital. I'll be honest: It feels better on my end as I felt more sorry for that crimson colored, mortified mommy than I did for Gideon. It's not a secret he's bald. He knows. It's okay. I had that wow-I'm-on-the-other-side moment. I was all, THIS is how it feels... Weird, and not at all painful!

4. I found myself pouting this morning as I woke up at the break of dawn to get my kids ready for the hospital. Why? Because the REST of the world had a snow day and I DIDN'T. Hmph. There are no chemo snowdays. Wah-wah-wah! Never have I been on this side, either! On the upside, I would still be in my jammies and not wearing a fabulous Glinda-like headband right now and sparkle eye shadow.

5. Since Gideon's counts are so low, he will be at the basketball game during half time only (when the drawing occurs for an ICE watch). Brody and I will be there the entire time. I hope you can come out to Mattawan High School TOMORROW at 7:15 in your orange! (Please? Thank you.)

6. Taking ONLINE courses is NOT for me. Seriously, I am having a real hard time getting motivated to do anything. I guess that shows my immaturity in needing extrinsic motivation: like people.

7. I baked you some brownies, but somehow they have disappeared. Sorry.

Hopelandish

I don't believe in accidents anymore. Not one tiny iota or single dust particle floating in front of the sun-drenched window do I think accidents occur anymore. Mistakes may, but not accidents. And no, they are not the same.

We have soundtracks for every single step in our lives. They are musical soundtracks that I play for different situations. It's like a movie in this house, only we have a wider variety in our musical spectrum than the Jaws-like crescendo of instruments and clashing of ominous symbols. Lately, we listen to our "SONG TWO" in our Morning Soundtrack quite a bit. It is a song written in Icelandic by a band from Iceland (I guess that was a little Captain Obvious of me...) called Sigur Ros. We usually spin in circles to this song. Lots and lots of circles until we have to lay on the floor to get steady again. Yes, this has been a favorite, and the boys ask for me to repeat it because they KNOW my weakness when it comes to twirling and this particular song. Also during this time, we have been experiencing more nosebleeds from our body sensitive Gideon. The nosebleeds aren't related to the spinning since they don't happen during or after the fun, but you will see the connection soon. (By the way, SUPERHERO Nurse Michelle gave us the tip to hold an ice-pack on the back of the neck when nosebleeds strike, and it WORKS.) Anyway, please remember these few popular activities of ours: SONG TWO, spinning in circles, rolling in snow (well, I didn't mention that, but now I did), and nosebleeds. Also, please note: we had no idea what Sigur Ros was singing about...not at all. (Tom and I did have the opportunity to hike in Iceland, and let me tell you, IT WAS OUR FAVORITE COUNTRY! If you are a hiker and love the outdoors...DON'T miss it! But we didn't even attempt the language. So, again...I had no idea what Sigur Ros was falsettoing about. Woah. That was another sidetrack. Again.)

Brody wanted to make a computer movie, and he picked this song. Once he made his portion, I looked up the meaning of the lyrics. I didn't want to post it if Sigur Ros was singing about something I don't support. Like laundry. Anyway, I found the translation and had to close my eyes in order to let my heart stop turning amazed flips. That warm Holy Spirit comfort set fire to my heart and I was thankful Brody chose this song and that this led me to finding out what it meant. This movie includes the lyrics to the song, and I think you will see why I no longer believe in accidents. Grateful, grateful, grateful.

(NOTE: There are "nose picking" pictures in here. They did not cause nosebleeds since they weren't the digging deep kind, it was the rest-your-finger-by-your-nostril-'cause-it's-funny kind. So Gideon's sensitive nose canal was by no means harmed in the creation of this movie. Thank you.)

I Whip My Hair Back and Forth

We reside in Breakdown City over here. Tom and Brody tried to sneak the fact that they were going skiing this afternoon, but that Gideon is no fool. He knew what was going on and profusely asked over and over and over, "May I PLEASE go with you? I will ski with mommy! She can HOLD me!" That he thought me holding him while going down a hill was a good idea shows his absolute desperation. I had to be straight with him.

"Gideon, your platelets are low right now. You aren't ready to ski yet. Your body will get more hurt than most people's if you fall. You can ski when your platelets are up!"

Brody didn't like how I was explaining things to his baby brother, so he stepped in, "Gideon, you're like a light bulb right now and I don't want you to break, okay?"

With tears rolling down his precious cheeks, he squeaked out an "Okay." I told him my skis and his skis were hanging out together in the basement, talking about their next run, and that further helped him out. As soon as the door closed and Tom and Brody were gone, his little bottom lip started to tremble.

"LET'S PAINT!" I belted and jumped up in a way that would shock him into forgetting he was sad by my crazy outburst. Being borderline crazy helps in many situations, I have found. Gideon loves to paint. So, paint we did! We painted ornaments, and he was so adorably focused on the task. I should have taken pictures of him with his delicate brushstrokes, his intense stare, and intermittent evaluation of his work here and there. I was too into my own painting, though. We both get lost in creation, Gideon and I.

We had a KIDS satellite station on since Gideon got to choose our creative inspiration music. We have had 24/7 Christmas music on over here, and I think he wanted a little break. A song came on, and I kid you not: Gideon put his paintbrush down, looked at me with eyes that said, "You HAVE to be joking!" and then he said, "This song needs to be turned off, please." I asked him why and he answered, "She whips her hair and that's ALL." I think he meant, "She says 'I whip my hair back and forth' too much and it annoys me." I started to laugh and turned off Willow Smith's song (Will Smith's daughter. AND...I just blogged about Will Smith. CRAZY connection, huh? I didn't think about that until now).

As we sat in the quiet, Gideon started to sing his own song. I asked him to sing it a little louder, and it came out "I WANT MY HAIR!" over and over and over. Seriously this kid makes me lose weight from LAUGHING. Of course, I gain it back by eating what is leftover on his plate, but STILL! I think he got his inspiration from Willow, although copyrights should not be infringed since his notes and timing are completely different than Willow's. Also, it's a cancer kid singing about wanting hair. I think he'll be forgiven. :)

We started the afternoon with tears and ended it with song. Not too shabby, huh?

So that you can follow this blog post (in case you haven't heard this song):



And, now....Gideon's song:

The stars may not be visible, but they are there!

I sometimes daydream that Will Smith will show up at my doorstep in a black suit, Wayfarers covering his eyes, and say, "Look into the light!" Then ZAP! My memory is erased so I just decide to drive to a beach and lay there. Letting the sun soak in and my mind relax, I fall asleep on the sand with the lulling waves as my only distraction. I miss that carefree la-la-la attitude I remember like an old friend I can't find -- not even on Facebook. The capability to silence my brain completely and to feel that holy peace of stillness is difficult these days.

It hit me the other day when I was going to the grocery store. I remember walking into that place not long ago and thinking, "I could pick anything! ANYTHING to make for dinner tonight... OooOOoo. Food adventure!" and then I'd peruse the veggies and fruit and just allow the sensory overload of all of their fun colors and delightful smells rush over me. The soundtrack was a continuous whistling in my head, and lightheartedness was commonplace for me. It was so easy to smile at strangers.

This last time I visited the grocery store, I had to get soft pretzels (the only thing Gideon is eating right now) and I was on a mission girl. Even though it's still the same festive place and I'm by no means gloom-and-doom, there is still a lodged rock in my soul that will not budge. It's not a Grinch rock that makes me glare and feel angry, it's just a heavy weight that keeps my normally helium-filled heart grounded in the reality of it all. Even when I don't acknowledge it, it is still there. I think it's name is "cancer," this boulder.

I didn't want to stay away too long incase Gideon needed me or got into one of his moods. (Did you know that lack of blood causes one to get very moody? I had no clue. Now I do.) As I waited impatiently in line, I really despised the way the cashier kept wiping her nose with her HAND. That's right: I got out of that line (even though I had less than 5 items) and went into the long one full of people stocking up for the week because of Booger Girl. Then, when I got into my car, I used sanitizing wipes on every article I bought. Yes. Carefree. Will she ever come back to me?

Also not too long ago, I adored giving my boys a bath. We rigged up a little basketball hoop and played "DRAIN IT!" I know! That pun-a-rrific name fits well for bathtub b-ball, huh? The winner got to pick who was to be washed first. Now I make the boys take separate baths since Gideon's numbers are low in fighting infection of any kind. I'm not risking anything.

Last night, I put Gideon's bony body into the water. He gets cold easily these days, so I had the heater cooking in there and my mask still secure over my mouth. I noticed more bruises on him (a sign of low platelets), and his eyes seemed more sunken in to me. I blamed the lighting and the fact that my bathroom is Kermit green. That'll make anyone look sickly, right? But, still. He was bruised and a walking skeleton. I was feeling that weighty feeling more than ever. Then, that sweet child nudged the boulder out of the way and I felt a burst of my balloon heart again. Since he could talk, Gideon has asked the same question the moment he was placed in the bath. He said it again last night, "Mommy... I don't want you to wash my hair, okay?" This time once the familiar words escaped, he started laughing. I could see his ribcage practically guffaw right out of his body with every shake of hysteria. Once he caught his breath he said, "Oh! Well. I guess I HAVE no hair. Neverrrrrrrrrrrmind." Oh. Thank you, weightlessness of the sillies. Maybe you had to be there to experience the beauty of this moment, or maybe it was such a fantastic moment due to the sadness I felt right before it happened. Perspective does that. Gideon makes fun of his cancer without even realizing it, and it just....helps. It helps us all.

That's one thing about being a mom of a child with cancer: things are either horrendous or serenely perfect and beautiful. I have experienced no middle ground in this new world. I think the horror of cancer makes the smallest moments that much more blissful. Normal isn't normal -- it's heaven. I have also experienced, as you can tell by this blog, the pinnacle of humanity and the giving human spirit that surrounds us more than we know. Why is it so obvious when horror strikes? Why does it take disaster to expose beauty? I see it everywhere now. No, I may not always have a carefree spirit these days, but my newer balloon that appears is now made up of pure awe. Awe takes me higher than carefree, so I need to focus on the blessings behind the curse.

My heart is in complete awe with the way Gideon is responding to treatment and the blatant daily reminder that prayers are being answered. Please pray that the bugulators of the season stay away from our immunity-impaired boy! What you're doing is working, everyone. Thank you. I think I may always sign out with a thank you.

(Is it just me, or do I always talk myself out of gloominess once I blog? This outlet is magic, I tell you!)

The best of the best FISHIES

Gideon's numbers are bottoming out when it comes to his ability to fight infections/germy stuff. The good news: He has been healthy regardless of the gloomy low numbers. When it comes to my germs, it turns out I have a sinus infection. I will continue with my hand washing and mask wearing until it is kicked. Did I mention I'm claustrophobic? I am. I refuse to get panicky, though. Even if this murky mask steams up and makes me feel like I can't take deep breaths. Mind over matter. Mind over matter... Breathe in, breathe out. Breathe. If it keeps Gideon healthy, I'll go into a small box that is locked, if I must. Gulp. I'll admit that I run outside every once in awhile to just breathe air without the mask. Ahhhhhh.

The bad news: We were told we cannot ride "The Polar Express" this weekend. It was a special event for Make-a-Wish kids... complete with hot cocoa and Santa. It's okay. We'll go on a train ride another time. I just am not telling Gideon. He was looking forward to it. We'll make other special memories in our house this weekend, instead. I'll think of something. Christmas time is magical even without the Polar Express.

Speaking of Christmas, I have been getting emails asking if Christmas presents can be sent to the boys. Even people we have never met have sent these emails. I am, once again, misty about the whole idea of strangers loving on us as you have. I have a request, though: Is there any possibility you would be willing to send an alternative gift? There's a story to this:

During Gideon's latest blood transfusion(s), he asked what kind of "good fishies" he was getting pumped into him to fight the cancer sharks. I told him they were from someone else's blood. He asked how they worked, and I told him how very good people go to blood drives, get a shot, and get their good fishies taken out of them since they have enough for themselves and to share with other people, too. Here is the miracle of the story: Gideon looked at me and said, "These are someone else's good fishies? They are giving them to me? From their own blood? I'm getting someone else's blood?" I answered yes to all of these questions. Gideon got very quiet, stared at the bag full of blood and just remained staring for a few seconds. He then said, "These are the best fishies I have ever gotten, then." I asked him why and he answered, "Because someone who has a happy heart got a poke just for me! Wasn't that nice, mommy? These fishies will get those sharks for sure!"

So, here's my request: Please donate blood in Gideon's name this holiday season. Please fill out this fish template or this one with your name, your blood type, the date you donated, and a message for Gideon. Then, send this fishy to Gideon as his Christmas gift. He understands more than any normal 3-year-old the beauty of giving. We will make a fishy line to hang around his room and we'll add each fish as it swims into our mailbox. This is the only gift we'd like you to send, please. I can't think of a better present! Our address: 6685 Pleasantview Drive, Portage, MI 49024.

THANK YOU for all of the love you have been pouring on us.

SeeeeEEEEEEEEEEEE?!

All day long I have heard my mom's voice in my head, "SeeeeeEEEEEEEE?" This was the one word she used instead of what she really meant by it: "See what happens when __________?"

"Mandy! Stop jumping on the bed! I don't care if you are wearing your Wonder Woman Underoos; they will not stop your fall."

BANG! BOOM! OUCH! (That was more retro Batman than Wonder Woman, wasn't it? But I'm just recounting the sequence of events.)

And three stitches later...

"SeeeeeEEEEEEEEEEE?" mom said this in a low and grovel-like pitch at first, and then as the word gained momentum, it would slide up three octaves. The more severe the situation, the louder and more pronounced the "SEE?!"

I completely made fun of my germophobic family members in my last post. In fact, I asked them to stop reading all together due to my mall trip. That was not nice. I am now among your ranks within this strange and uncharted world of Germophobia. Who would have thought the girl who encouraged playing in dirt and rolling around in McDonalds Playland would turn into what I am today? Life. You're one crazy boardgame, I'll tell you what. SeeeeEEEEEE?

I had a scratchy throat this morning, and this came after feeling like the life was completely drained out of me once I got home from the hospital last night. I panicked. Gideon's immunity is lower than it has ever been, and I was afraid of what this throat might mean. And, believe me: I imagined it all. So, I shipped the boys off to grandma's, went and got a strep throat test (it's negative), bleached every bathroom and disinfected every doorknob. I even opened windows and let the fresh snowy air blow for a few minutes. I am now wearing a mask as seen above, carrying hand sanitizer in my pocket, and washing my hands until they are raw. My doctor even prescribed me an antibiotic without even knowing if it will help. And, the craziest part is that I'm actually taking it. I have always been an anti-medication girl. Now, cancer turns the world upside down and I'll swallow any pill if it lowers the risk of harming one of my babies.

A cold is just a cold to me, but it is so much worse for Gideon. I am already terrified that I passed on the germs to him. I have been getting teary all day remembering our time together at the hospital yesterday. He was connected to my shoulder or lap the entire time we were there. If I was coming down with this then... ugh. I have major mommy guilt right now. Please, please, please don't let him get it! Not when his body is so incapable of fighting it.

Gideon and I were at the clinic from 9:30 to 4:30 yesterday. Once again I watched as platelets from a stranger ran down the tubes and pumped into my baby's veins. No matter how many blood transfusions I witness Gideon getting, I will never get used to it. This immense heart-in-throat gratitude towards an absolute stranger who is saving my boy makes me feel like I probably could fly...with or without the Underoos. Whoever you are, donor extraordinaire, I love you. I hope you can feel my love coursing through the atmosphere straight into your heart with every millimeter of your life-sustaining gift that drips into Gideon. Blessings to you, B Positive!

Then came a bag of red blood from another nameless (but saintly) stranger. Gideon fell asleep on me as I chatted with other moms waiting on their children getting treatment. I need to say this: It is rare for Gideon to nap in public. It is even more unusual for him to nap when there are people around (his personal audience). It is that nap that makes me worried to the point of feeling the need to pace nervous circles around my house. His precious little face rested on my shoulder for so long. And when I talk with enthusiasm, as my students can attest, I spit. Not alllll the time, but sometimes. Oh. What if a droplet of spit landed on his lips and he licked them? I feel panicky and worried.

The boys returned from grandma's today and Gideon's cheeks are still rosy from his recent blood rejuvenation. He is not sneezing, acting cranky, not anything...yet. Please pray it stays that way. In the meantime, I will be in a mask and practically in a Hazmat suit until this bugger bugs off.

I have also been drinking gallons of "Get Happy" tea (BEST stuff EVER! Colleagues, this is the tea I almost forced every teacher to drink last year... Maybe it's placebo, but it makes me happy!) from World Market out of my Great Grandma's teacup. For some reason, that cup is more healing than any other. I have also been listening to a song my colleagues are also familiar with since I played it CONSTANTLY right before school started last year. It makes me calm. It makes me feel like everything will end up okay. So, I will post it. "One day" this cancer will be a thing of the past. "One day" I will not have to wear a face mask when my throat is sore. "One day" both my boys will be grown ups and will take care of me, instead. One day....but I will still try and enjoy today without worrying about what might be. There are too many maybes and I am most definitely not in control. I've done what I can, and the rest is in God's hands.

Peace and love to you all...especially those of you catching snowflakes on your tongue or stringing up your festive lights. It is absolutely gorgeous out there!