Thursday, January 17, 2008

In the Face of Fear Sit Me and Little Miss Fearless

Woke up to GREAT news. Jill's ANC is 160. The jump to 500 could be as little as 2 days away...we may be going home Saturday! (It could stay there or go the other way too, but the past 2 rounds have shown a 3 day jump from zero to home). Oh man, the anticipation of this round coming to a close is sooooooooo much greater than that of the first two. Probably being stuck in isolation for 8 days contributed to that. I had some horrific dreams the last night of her isolation. In one dream, I was swimming in a big indoor pool (and I caught my reflection in a bathing suit...yikes...) and someone came along and slammed a big heavy metal cover over the top of the entire pool. There was no space between the water and the cover....I was drowning in pitch blackness. I woke up from that to my nurse telling me it was time to give Jill her 4 am meds, for which I have to sit her up, whisper that I'm about to squirt yuk down her throat....she whispers back "otay" with her eyes glued shut, bravely swallows, winces, and goes back to sleep. I couldn't go back to sleep after this. I felt like I couldn't breathe. I simply couldn't take another minute of this. I was sitting on the bathroom floor crying, trying not to picture my life without my little Jill (I've been having those really scary thoughts ever since October....it's like when someone tells you NOT to look at something, you have to look). I almost called Matt, but didn't want to wake him up & worry him more....so I tried to go back to sleep, and kind of wish now that I hadn't....my next dream was horrible. I was being chased by a carload of suicide bombers....it was a heavy-set, dark-skinned man with thick black hair & a gnarly moustache....his eyes were tired and droopy, but he was focused on the road....he never looked at me. The somber expression on his face never changed. Also in the car were his wife and 2 children. They were in a beat-up white Datsun....it seemed as if they had been poured into the car....it was so small. The tires were very worn, like if he went a little too fast, they would just fall off. Each member of his family was wearing the same expression, a mixture of bored, sad, tired. We were driving on the freeway....Matt and Anna & I. They didn't know it, but I knew, that as soon as we stopped, that man was going to detonate a bomb strapped to his chest & his family & mine were going to be blown to bits. I tried as hard as I could to get my car away from his. I zipped in and out of traffic....even whizzing by 2 police cars, assuming they would pursue me and the man would choose a new target, but they didn't seem to notice, or care that I was going 100 miles an hour. Every time I gunned it, he gunned it....his expression never changed. He never looked at me. I knew if I could get him to look at me, he wouldn't be able to do it. He would see that I was a real person, somebody's mom, somebody's wife, and he would take pity on me. But I knew it was over. It was over.

Those dreams were more to me than just feeling trapped by the isolation of the room. They represent feeling trapped by cancer. Whether it's an appeal to God (who controls who lives and dies) or the Spirit behind the Science (????), I want cancer to look at me. Look at us. At our beautiful family. At our friends. Our families. How much we care. How hard we try. How good we are. How could cancer destroy my family? Doesn't potential matter? Doesn't a promise to change the world mean something.....because Jill will do exactly that (hell, she already is, one person at a time). Which leads me to our beautiful story of the day.......

Throughout the course of the day today, Jill and I have gotten to know 2 families whose little children have VERY recently been diagnosed with leukemia. One is a 2 and 1/2 year old girl who is so incredibly scared. Jill has made fast friends with this little one.....even though the girl has not said a word to Jill yet, and barely looks in her direction.....I can tell that being around Jill has given her a little peace. A little bit of "I'm not the only one having to do all this yucky scary stuff". She watched Jill get her blood pressure taken. We talked to her about how Jill takes her medicine even though it's not so yummy. But most of all, Jill showed her how happy you can be despite being sick. "C'mon friend! What are you waiting for? It's so much fun here!" This sweet baby watched more and more intently throughout the day, my little angel girl dancing around in her butterfly fairy costume and casting good magical spells on unsuspecting friends. Later on this evening, we met another girl, 10 years old, who was diagnosed today. Her mom is so strong...I thought she had been here a long time, or was back for another treatment after being out a while. She has been all smiles and confidence in front of her daughter, but talking to her confirmed her absolute terror. She asked question after question and excitedly ushered Jill into her daughter's room so she could see Jill's broviac site (her central line with the tubes hanging out of her chest) as she will be having a similar procedure done tomorrow. Jill bravely sat in my lap while I talked to this gorgeous innocent child.....distracting herself from the family members surrounding the bed and the jargon and the fear of tomorrow with her laptop. She seemed relieved to know that they would be putting her to sleep for the procedure and that she may get to experience a lot of fun things and people at the hospital....that it wasn't so bad. Not at all.
The point of these stories is to illustrate how much of a difference our Butterfly Fairy is making in the lives of scared little kids just like her. One of her nurses today referred to her as the Ambassador of Sick Children. Earlier in the evening, a little boy was wheeled down the hallway and out the door, in his crib....he was going down for a procedure and he was so scared. Jill had previously been playing with him in the playroom and they would whiz past each other in the hallway on their respective tricycles (Jill, by the way, yesterday learned how to pedal and sort of steer on her own!). As he passed us, Jill kept going, "Oh! Oh!" in a very high-pitched, concerned sort of way....she watched intently as the doors closed behind him, then turned to me and said, very somberly, "I sad for him, Mommy." My bleeding heart.

As this day comes to an end, I am constantly reminded of how lucky we are to have so much time to share with our baby. I have grown to absolutely LOVE and RESPECT her, to be awed by her, to be so amused, so impressed, so stunned and amazed that she is the complete person she is. This child is absolutely phenomenal....not a moment goes by that I am not grateful I get to be her Mom. That I am the one who gets showered with kisses and huge, gooey hugs throughout each and every day. That I am the one who hears "I yuv you so muts" and "You my best fwend" a billion times a day. That I am the first-hand up close witness to the awesome wonder of this little personality. The smile that melts strangers' hearts. I could not possibly love more deeply or feel more blessed than I do every day that is mine and hers. May every one of you, my dear friends and family feel a tiny smidgeon of this great love for your own children, and life itself.

1 comment:

Anonymous said...

Hello Michelle,
Just sending positive thoughts and prayers for good numbers to come. =) Your little Butterfly Fairy is an inspiration to all ...even those of us who have never had the honor to meet her smiling face.
Have a Happy Day,
Alyce