This Is Hard

This is hard.  This is really hard.  It seems as if we’ve been leaving people hanging for information, but that’s where we are.  Hanging for information.  Maybe that’s where the expression “Hang in There” comes from.  Anyway, we have no genetic test results yet (4.5 weeks into what was a 3 to 5 week waiting period.  I guess it’s going to be 5 weeks).  So we are still at cyclic neutropenia or chronic benign neutropenia of childhood.  One is lifelong, the other she outgrows.  Both are imminently treatable.  There is a very slim chance it is neither if she doesn’t outgrow the latter.  For that information we may be waiting until she is 5 years old.  We could be waiting for 5 years, for forever, there is no knowing.  Learning how to live in the not knowing is hard.  I guess that is what I meant by “this” in the first sentence.

In the meantime Little Miss Jr. is beautiful, growing and healthy.  She’s awfully chatty for a 4-month old, fitting herself right in with the family. She hates sleep with a passion (too much fun will get missed).  She had her 4 month vaccinations and they knocked her out for 42 hours or so, which is hard (there that word is again!) because it’s tough to experience her under the weather knowing what it has led to, but probably won’t again.

Little Miss is vivacious and talkative as ever.  3 is a really fun age for her and us.  We just got back from “A Snowy Adventure” including a scavenger hunt down the wooded path to the pond across the street.  I learned that it was fun, I have to make the clues harder and she has much more stamina than she used to.  She learned “it was fun, and happy, and great” so there’s a ringing endorsement.  We buried princesses in the snow, she played in a muddy puddle, and she declared herself “an expert mountain climber”.  I’m not going to lie when I tell you that it was an awesome mommy morning.

Other hard things:  I have started to give LMJ injections of G-CSF at home; if we want to travel to family in NJ, which has not been cleared by the doctor, I have to find the closest (and hopefully cleanest) hospital “just in case”; sometimes I just can’t shake sad; getting her blood taken every single Friday makes for a crappy Friday; hematology appointments are generally the kind people try to avoid their entire lives.  Those are just the really hard things on top of regular hard mom things that you can read about from our Tuesday poster in this blog:

I continue to be grateful for community and support and everyone who has kept me above water with thoughts, prayers, and kindness.  Every text, email, message, and morsel of food is beyond appreciated and gives me strength.  Keep us in mind as our weeks are turning into months and LMJ goes longer and longer without incident.  Until next week, when I hope you will read again.


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