Sunday, May 12, 2013

Now We Are Three




Dear Anabelle Rose,

Today you are three years old.  For three years you have survived the hand you were dealt, and we have survived with you.

I'm not going to lie: this year has been hard.  You threw us a lot of curveballs and had us guessing and second-guessing a lot.  In December, I said to my closest friends, "I feel like these may be Anabelle's last holidays."  You were so sick and not getting better.  You needed suctioning and oxygen all the time.  And it wasn't anything the doctors could fix, it was just cold after cold that you couldn't handle.  We started questioning whether you were going to need a tracheotomy.

Last June, some hard growths started appearing under your skin.  The doctors were flabbergasted.  They had never seen anything like it before.  They were spreading all over your arms and legs.  We did CAT scans and MRIs.  Every single rheumatologist and endocrinologist on staff at the hospital was consulted.  Then we went to another hospital for a second opinion.  No one had any idea.  They presented us with a couple of treatment options, then told us they didn't recommend any of them, as they were all more dangerous than the condition in its current form, and had no guarantee of working.  All we could do was pray these things didn't start growing on your organs or breaking through the skin.

 With the leg tensed, you can see all of the calcifications just below the skin

And then you got better.  You have had only minor colds since January.  We are now 11 months hospital-stay free.  The latest CAT scan showed that the calcifications have all but disappeared, that what we are feeling in your arms and legs now is simply scar tissue left by their presence.  Once again, you had quietly and stubbornly beaten all odds.

It is very fitting that today is also Mother's Day, because there can be no greater gift than having this past year with you.  This bonus year, as is every one to come after the 2nd birthday we were told you wouldn't see.  No matter how bad things get, how sick you feel, how uncomfortable you may be, you always look up at us and smile, and remind us that all we can do is smile through it all, too.

You are my hero,

Your loving mother


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