Last night, for an unknown reason, I woke up in the middle of the night.  My stomach tightened as, for no discernible reason, I began to worry about what might happen if one day Adahlia wandered off.  And then I thought about how sad it is when people steal children.  And I thought about how everyone who meets Adahlia pretty much falls in love with her.  And then, like a crazy person myself, I couldn’t stop thinking or shake the sickening feeling as I imagined looking over from conversation or gardening and discovering that she was gone.

Now, I’m not a risk-adverse person.  And I know what I am about to say might shock you or make you “tsk-tsk” but its the truth.  I like risks.  I like challenges.  They are part of Life and I find them enjoyable.  In the sliding scale of “adventurer” on the extreme left and “worrier” on the extreme right, I am definitely further to the left side than the right.  And I don’t think being a mom — if I had been a mom of a rather typical or healthy child — would have changed that.  Because it didn’t affect my pregnancy.

For example:

When just about a month pregnant, I zip-lined the over treetops in a haunted forest, spinning in my rope seat, arms out wide as I exclaimed in exuberance to the baby in my belly: “We’re flying!”  Then, when I was about 3 months pregnant, I insisted to Joe that we go skiing and, yes, I did tumble in the snow… three times… and each time, I laughed.  And when it came time to give birth, I chose natural, drug-free labor and delivery even though my right kidney had been swelling all throughout our last trimester, causing bouts of kidney colic and extreme pain that left me bedridden every few weeks.  I didn’t freak out.  I was excited, not scared, and I gave birth like a champ.  I certainly didn’t want any unnecessary medical intervention for me, or my baby.

Now, maybe you think such things are foolish, or even stupid.  But I didn’t and still don’t.  I took and take what I consider calculated risks, and I still consider them worth it.

So, no, I don’t think that as a regular mom, I’d be lying awake at night worrying that my daughter might disappear on me.

But, as a DBA mom, you bet your buttons that last night I did indeed lie awake… for hours.

Because let’s be honest.  A healthy little girl always has a fighting chance at survival if she disappears, especially if she is smart.  But lets say Adahlia wanders away: even if someone meant well and wanted to take good care of her but was afraid of the law, she’s only got 3-5 weeks at the most.  Worst case: let’s say it happens when she is days from needing a transfusion (like now).  Or let’s say we get into an accident of some sort and I’m unconscious or dead, but she survives and is wounded and bleeding.  What are the odds of survival for a little girl who doesn’t make her own red blood cells and nobody knows?

And I realized:  the time has come for a medical ID bracelet.

So I ordered one.

Fact:  There are not many toddler-sized medical ID bracelets.

This is a good thing.

But having to shop for one is sad.

I finally found one I liked; one that I could put up to 5 lines of information on the inside of a sterling silver ID, so her information would be more private.  The front says “see other side” and medics undo a piece of velcro to turn it over to read it.  The plaque is mounted on a kid-friendly, pink velcro nylon looking bracelet.  I also ordered the bracelet in purple, as the plaque can be changed out onto different colored bracelets.  Its only 4.5″-5.5″ long.

I put a lot of thought into what should go on the plaque.  In the end, I chose:

Her name.  Her blood type.   Her diagnosis and what it means: “DBA Red Cell Aplasia”.  The words “Needs blood transfusions.”  My contact info:  “Mom: xxx-xxx-xxxx.”

And then I thought:  But again, what if I am available or unconscious myself?  How can I make sure she’s taken care of if no one knows what her most current medical situation is?  In DBA, a child’s medical situation can change drastically in a month, due to iron overload issues and many others.  Just giving her blood might not be enough.  Well-intended but ignorant doctors simply wouldn’t know what labs to order, tests to run, and interventions to give.  And DBA is so rare that the truth is that most doctors are indeed ignorant of the disorder.  Most have never even heard of it.

So I put the name of her hospital followed by “pt” for patient.

This way, I figure, if she is lost and found, they will try to contact me.  And if they can’t reach me, they will contact the hospital.  Medical and other authorities will be able to call and say that they found one of their patients.  They could access her nurses and doctors, and her record if necessary.  And I know her nurses and doctors would immediately jump to help her.  In an emergency, they would eagerly take over her care, or give directions to whatever hospital has her in their possession at the moment.  Shoot, maybe the ambulance would just take her directly to her hospital.  Who knows?

…

Sigh.

This is the life of a DBA mom.

Yet, I think I will sleep a little bit better, tonight.

And before I go to sleep, if you are reading this blog, say a quick prayer to the sales girl at the baby resale / consignment shop who, in conversation, randomly told me that her little son had died. How she was looking forward to trying to get pregnant again some day.

I did not mention Adahlia’s condition.

What is a DBA diagnosis to a woman who has lost her own child?  A gift.

I can’t imagine how she manages to come to work at a baby store every day.

When we finally were released to go home from the hospital after Adahlia’s original week-long hospitalization due to severe anemia, when her hemaglobin had been brought up safely from only 1.9 – barely life-sustaining – and the doctors had confessed that they were worried her heart would fail at any moment, which is why they wouldn’t let me nurse her, because digestion might take the few, vital blood cells away from her heart… well, it was a day of mixed feelings.   I remember coming through the door and staring at all the baby stuff scattered throughout the house.   Feeling a bit out-of-body and thinking how strange all the bright and gay baby items looked in this new light, this near-tragedy that all the doctors had made a concerted effort to tell us wasn’t over.  Was just beginning.  All those little items of hope and joy looked, well, like a lost dream.  And I told Joe:

“If we hadn’t taken her in when we did… or if she’d died… coming home to this… I couldn’t have…”

And he had nodded.  “I know.”

Goodness, friends, what we endure in this life!  Oh, its amazing.  We are amazing people on this tough, beautiful, and challenging planet.

Love to all.