Two Sides of a Rare Coin

Well, dear readers, this is what I want to say to you:  Little Miss Jr.’s infection is healing well, she is happy, healthy, strong, fever free and we got her blood test back and everything is normal!  Unfortunately that is not what I have to say – everything is true (and wonderful) except for the last part.  We got her blood test back and her neutrophils are way low – severely low, in fact.  What did I do when I heard this information?  I broke down like any good mother and barely heard what the doctor had to say from there.  It was a good thing Hubby was there with us.  We are dealing with an issue bigger than I wanted it to be and have abruptly switched gears to day by day mode.

After her blood test results on Friday we have decided to treat her again with a medicine called G-CSF.  Experimental in the 1970’s (when I was born!) it is now the drug of choice to boost neutrophil production and it works like a charm for Little Miss Jr. right now.  I can learn how to give the shots on my own at home but this week I will be going to the pedi on Mon, Wed and Fri to learn how and have a set of eyes on her.  We have a blood test every Friday.  If this problem persists for five more weeks she will meet the criteria for a chronic rare blood condition.  A chronic rare blood condition.  That sounds really bad so I try to turn off the neon light in my head displaying these words as much as possible.

My strength during this period of time has taken me by surprise.  I don’t know why.  I consider myself a strong person but I guess you never really know until you are put to the test.  And this is how I feel in this moment.  Four days ago when I started to write this blog I wrote this:  “People tell me I am doing great, holding it together so well, but they don’t see me hand off my baby in tears because she fussed the tiniest bit and my anxiety went through the roof.  Only those closest to me get to watch me fall apart when her axillary temperature is 97.9 just to test her rectal temperature and have it be 98.4.  My heart rate increases, my breath shortens and my hands shake as the thermometer numbers rise and I am literally dismayed by the number 98.7.  I am terrified of her 4 month vaccinations and just thinking about the results of her genetic test are enough to make me puke (sorry to be so graphic).”

So there you have the two sides to this very rare coin.  Please allow me to tell you some true things:  I have never loved my family more than I do right now – my husband and my two girls.  I appreciate, yes I really mean that word, the clarity these moments provide to cut the crap from my life – separate what really matters from what doesn’t at all.

I am not a religious person (but those of you who are please keep praying for us – I honor, respect and envy your ability to do so).  I draw my strength from human compassion in all its forms.  I thank you for taking the time to read this, think of us, and send us all the love, strength and positivity you can muster.


One thought on “Two Sides of a Rare Coin

  1. I love this essay called “Welcome to Holland” by Emily Perl Kingsly. It helped us when we found out about Sienna. Life is full of challenge but always wonderous.


    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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