Monday, January 30, 2012

How is Anabelle?

It seems that I cannot leave the house and go anywhere in our small community without running into someone who asks how Anabelle is doing.  A simple enough question, and yet I always pause before answering.  Because I am never completely sure what it is they want to know.  Are they asking after her physical health?  Interested in her emotional status?  Or do they want to know about her development?  Anyone one of these could be covered by the simple phrase, "How is Anabelle?"

More often then not, I answer with a simple, "Doing fine," unless she is actively ill at the time.  The truth is that, healthwise, she is doing fantastic.  She is rarely ill, even when the rest of us seem to be down with something.  She has had only one small bout with pneumonia, which cleared up very quickly.  She has had only 3 short hospital stays post-NICU in her life.  This is remarkable in comparison to some of her friends.  However, I am always afraid that if I wax too effusive over how well she is doing, people will think I mean she is on the verge of walking and talking.  I can never be sure of their expectations for my response.

Emotionally, she is fantastic, except when something is wrong physically.  When all is well, she smiles all day long, she coos, she sings, and she loves to be kiss and pet.  If she is NOT smiling, then we know that something is bothering her (usually just something simple, like she is over-tired, or needs to poop).

Developmentally, Anabelle has gone about as far as she is going to go.  There are "inchstones" here or there, but what you see is pretty much what you are going to get, until she starts losing skills.  On our recent visit to our new neurologist, he told us not to expect any more development, only a decline.  Now, mostly he can suck it, because we are still going to provide Anabelle with as many tools as we can to help her reach her fullest potential.  "Live and learn" applies to everyone, and every day she is here is a new chance to spread her wings.  But, whereas the first year of her life was all about testing her limits, this second year the focus has really settled on maintenance and quality of life.  If the only thing Anabelle ever learns to do is smile, I will be forever grateful for my little ray of sunshine.

So, if your question is, how do I think Anabelle is doing?  I think she is an amazing miracle.  I guess it all depends on your definition of the simple question, "How are you doing?"

This is a sick baby: during one of her rare illnesses

Instead of working on rolling, we are going to work on eating our hands

Head so heavy...

Naptime?  I thought you said PLAYtime!

Saturday, January 28, 2012

Through a Child's Eyes

Elyse has asked for bunk beds in her new bedroom when we move.  We were talking about that this morning and she says, "But someone else needs to sleep in the other bed, I need a big sister to....HEY!  I know!  MY SISTER!  We can put a crib on the bottom and a bed on the top!  Isn't that a good idea?"  "Absolutely," I told her.  Never mind that we seem to have overlooked the small issues of the night nurse, the loud-ass oxygen condenser and the fact that Anabelle never sleeps more than a few hours at a time.  To Elyse, it was the perfect solution.

A little while ago, Elyse had asked me when Anabelle was going to walk.  I took a deep breath, expecting this to be "the BIG talk" I've been waiting for, and I began with, "Well, you know that your sister is different from other babies you know, like Piper and Mia?" (baby sisters of her friends).  She got a confused look on her face and said, "No, she isn't", and then went back to playing without waiting for an answer to her original question.  I just sat there for a minute and let it sink in that somehow, Elyse has totally managed to miss the ways in which her sister is different.  Her 4-year-old mind only knows the reality in front of her.  She is not crippled by the vision of "perfection" that I lost in my mind.  And I realized that labels like, "differently-abled" and "special needs" are descriptors that WE have applied to Anabelle and her friends.  What if we didn't?  When I meet a new special needs friend, I always introduce myself as "Kate, mom to Anabelle, 20 months, with lissencephaly, microcephaly, cerebral palsy, central visual impairment, sleep apnea and undetermined seizures."  What if I said, "Kate, mom to 4-year-old Elyse, lover of all things musical and a sense of humor that will whip your head around, and 20-month-old Anabelle, owner of the world's longest eyelashes and a perma-grin"?  Why can't I stop defining Anabelle by her disorders, and start defining her by her PERSONALITY??  I'd like to conduct an experiment where for one week straight, I do not acknowledge any of Anabelle's disabilities, even to inquiring new minds, and see what results that yields in the way people interact with her.

I have said before, and I am sure will say again many, many times: God did not give Anabelle to Brian and I.  She was intended for Elyse.  We were just the parents already in place.  To Elyse, Anabelle is the perfect sibling: never cries, never steals her stuff, never demands attention, lets you dress her in any manner of ridiculous costumes, will take on any menial role in imaginary play.  How I wish I could shed my lifetime of social constraints and view my beautiful daughter only through a child's eyes

My all-time favorite picture of my girls (as seen in the Philadelphia Inquirer!  LOL!)

Sharing the love

Goofing around

Thursday, January 26, 2012

What do I know?

The first year of Anabelle's life, the focus was on rearranging our lives around her needs and testing all of her limits to see her potential for reaching milestones.  This second year, I have reached a point of comfort with her care, and her limitations have become pretty clear.  So I have felt my focus shift to imbibing her life with MEANING.  Making sure she touches people, making sure she reaches people, making sure her story MATTERS.  Speaking for her, or, as I have always thought of it: letting Anabelle speak through me.

And so I started this blog, we have grasped opportunities to share her story, we make sure everyone sees her for what she is (and what she is not), we let her stand for her special needs friends, we let her be the face of our family.

But it struck me recently: what do I really know about what she would want?  About what parts of the story of her life really matter TO HER.  At 20 months, even if she were typical, she could not tell me this.  I've realized that I am not concerned at all about what mark Elyse's life will make.  I don't need to be.  She can do that on her own, my only job is to give her a solid foundation.  Is it because Anabelle is never going to be capable of structuring her own life?  Is it because she will have such a short amount of time TO create meaning?  Or is it my own spiritual struggle with the existence of disability at all?  That if we were given Anabelle as a test or a lesson, then we had better make sure that lesson is learned?

I don't know.  I have no answers, just a million questions that keep me awake at night.  I can only do what my heart tells me is the right thing to do by her.  And so I share.  And I speak out.  Do I go too far?  Do I overcompensate?  Maybe she wouldn't care if someone used the "R" word.  Maybe she'd be secure enough in herself to laugh at ignorance. I'd like to think so, but I can only face life with my own history and experiences.  As much as I wish I could be in her head, I can only guess.

So, this is Anabelle's story, as translated by her mother.  Only she will ever know how faithful the translation really is

Tuesday, January 17, 2012

Our Little Advocate

When Anabelle was hospitalized this past summer, it was discovered that her oxygen dips while she sleeps.  Since then, she has required a nasal canula and 1 liter of oxygen whenever she falls asleep.  In order to take her home from that hospital visit, we needed to arrange for oxygen deliveries to our home.  When we called to arrange that, however, we encountered something unexpected: we were told that Anabelle's Medicaid disability insurance had lapsed.  Since we had sent in all of the renewal paperwork before the due date, and since Anabelle's category of Medicaid is tied to her disability, and not to our family income, we had no idea why this had happened.  However, it needed to be sorted out quickly, because we could not take her home from the hospital until we had the supplies we needed.  Since it is impossible to get through to the Medicaid office on the telephone, I had to leave Anabelle in the hospital and go down to the office.  Once there, I was told that according to their records, we had not turned the paperwork in on time.  While I sat there and argued with them, Brian was able to find the fax record on our computer that date stamped the fax I sent with the renewal paperwork, proving that it was there the week before it was due.  Only after that information surfaced did a supervisor admit to me that the case worker who Anabelle was assigned to had been having some "personal issues", and it appears she did not input the paperwork into the computer in a timely fashion.  We were assigned to a new case worker and her insurance was reinstated.

During this process, we had contacted an advocacy group in case we needed further help in pushing our claim.  We were recently contacted by a reporter from the Philadelphia Inquirer who had found us through this advocacy group.  He was doing a series of articles on the problems occurring in the Medicaid system, and wanted to use Anabelle as a case study.  Here is a link to the article that appeared today.  Please click on "A father's struggle every day" below the photo of my babies to read Anabelle's story:

There was also an accompanying press release video.  Anabelle's story begins at the :45 mark:

I can't tell you how proud I am of my little advocate.  We are so lucky to have been given the opportunity to share our story, in the hopes of helping other children.  We were one of the lucky ones: we got our benefits restored, because we knew how to advocate for ourselves.  So many others do not even know that they have rights to fight for.  If you do not fight injustice, then you are an accessory to its perpetuation