Monday, March 26, 2012

Seizure Monster

Today is Epilepsy Awareness Day.  With all of Anabelle's diagnoses, it is hard to keep track of everything she has, but yes, epilepsy is yet another thing we struggle with.  Almost every kid with lissencephaly does, and many with microcephaly, as well.  In fact, most of the medical care we give our kids has to do with two main health issues: keeping the Big P (pneumonia) at bay and controlling seizures.  We often miserably fail at both.  In the cephaly world, when we are having a bad seizure day, we say the seizure monster has come to visit.  We chase him off with pitchforks and rope in the form of emergency meds such as diastat and ativan.  I'm not sure if there are much worse things than watching helplessly as your child seizes.  Anabelle's most notable seizure is of the dacrystic form.  This is a crying seizure.  As those of you who know her know, my angel baby NEVER cries.  I think that's what makes it extra heartbreaking when she has one of these seizures.  Her face crumples up, then her eyes get real wide.  She looks terrified, then she lets out a horrible wail, like a newborn getting their first vaccinations, and breathes heavily.  I hope none of you ever have to witness it.

That is reality of life with lissencephaly.  Luckily, the awareness color of Epilepsy is the ever-lovely purple, which comprises half of Anabelle's closet.  All of Anabelle's friends had better make sure it have at least one shirt in every color in their closet, so they can continue to support all of the different ailments that plague her and her precious friends.  Here are some of her good buddies who shared the purple glow of love today...

Love to you all!  Thanks for spreading the good word!

Wednesday, March 14, 2012

Dead Babies

That's right.  I said it.  DEAD BABIES.  Because if you are going to understand every aspect of our new life, this reality is a huge part of it.

As I conducted my last Facebook spot check of the night before turning in last night, I noticed several friends posting updates asking for prayers for one of Anabelle's friends who is not doing so well.  This is at least a weekly occurrence in our new world.  Before having Anabelle, I knew ONE family growing up who had lost a child to cancer.  And it was always said behind your hand, "Their little girl died from *whisper* cancer."  I now know dozens of people who have lost their children.  And I know hundreds of children who are almost guaranteed to die before reaching adulthood.  My own daughter is one of them.

And I am not typing this through tears, and at this point, there is only a little anger (which flairs up, of course, any time one of the babies actually DOES die), but I want you all to get it.  Because unless you are the parents of one of Anabelle's friends, you may just not have any reference TO get it.  I know I didn't.  Sure, I was aware that kids died of diseases.  I was aware that children in Third World countries were dying of starvation.  I know about accidents and murder and suicide.  But it lived in my periphery.  Now, it is everywhere.  And not just among the special needs families that I know.  I have become acutely, painfully aware of ALL dead babies.  I feel like Cole Sear: "I see dead people...walking around like regular people...all the time.  Everywhere."  And with apologies to M. Night, my dead people really AREN'T dead yet.  I am just disgustingly aware of their imminent demise.

Even from the beginning, I was able to see that there were situations that were far worse to endure than ours with Anabelle.  Losing a healthy child through disease or accident seems impossible.  Watching your child starve to death with no ability to help them is torture I cannot imagine.  And since I'm pretty sure that 99% of you reading this are adults (and that the other 1% is comprised of my teenage cousins), I want you to participate in a little exercise with me: Close your eyes and replay your life in your mind, from your earliest memory to this very moment.  Now do it again, but stop at age 10.  Now imagine that was it.  10 years.  That's all you got.  No high school, no college, no career, no marriage, no first house, no babies.  No 21st birthday, no ruby wedding anniversary, no father of the bride.  10 years is a long shot for some of Anabelle's friends.

My intention is not to disgust you, upset you or guilt you.  I decided when I started this blog that I was going to be as open and honest as I possibly could be, so that Anabelle's journey brought as many of her loved ones along with her.  I assume that if you are reading this, that is what you are here for.  And while I marvel every day at the amazing blessings Anabelle has brought into our lives, and the lives of so many around us, I am also constantly aware of where this journey ends.  Of course, it ends where everyone's journey ends, the road is just a little shorter.  Watching babies suffer and die is a regular part of our new life.  It is what comes with the amazing support and camaraderie of knowing so many special needs families.  If you want to take this journey with us, you need to know that the scenery is always breathtaking...but not always in a good way...

Friday, March 9, 2012

What Is It Like?

Last night I had a dream that I had lissencephaly.  I was on a field trip with my class full of special needs children to a museum full of adaptive play areas (man, I wish I could find one of those!).  My mom was with me, but there was no husband or children, because, of course, I would not have those people if I were as neurologically impaired as Anabelle.

What I remember very clearly is looking around at my fellow students and thinking, "This is wrong.  I don't belong here.  I am not like them."  I remember my mind being clear, but my body not responding.  And then, all of a sudden, my mind would get jumbled and I would be disoriented and confused, but not confused enough to not realize, "Yes, I DO belong here."


I have no idea what it is like in my daughter's head.  My friends and I often joke that the cure to cancer or the solution to the Ramsey theory of mathematics is trapped in our childrens' minds, but their bodies won't let it out.  I have no idea how much of what I see with Anabelle is a lack of understanding vs. a lack of communication.  Does she ever have those moments of complete panic that I felt in my dream, when I realized I was trapped in my own body?  I seriously hope not.  Does she see anything in her world clearly, or is it all a swirl of information in her head?  Can she sort and filter information: this is a smell, this is a sound, this is a touch?  Or is it all a jumble of sensory input and she has no way to identify the source?  I have no idea

These are the questions that plague me and keep me up at night.  Those of you who do not have non-communicative children cannot possible understand what it is like to have to guess at everything your child is thinking or feeling.  Most of the time we can convince ourselves that it is a hidden blessing: that they will never know the fear of war and famine, the hurt from teasing or a broken heart, the grief of losing a loved one.  But then there are moments like my dream, when the panic that maybe they DO know more than we realize comes out, and we fear that they may, in fact, be afraid or in pain or sad, and we have no idea, and are not offering them comfort.  It is a terrifying, helpless feeling.

There is no solution to this.  Was there any accuracy to my dream?  I'll never know.  It was my cognizant mind trying to interpret her relatively UNcognizant mind.  And while I pray that she is able to glean as much as she can from her life, I also pray that all of it is good.  That if she is going to be as impaired as she is, that it at least comes with relief that she does not suffer the indignities of life.  I will never know, and so I can only hope.

Friday, March 2, 2012

Happiness is...

"I don't know how you do it"

This is a phrase that any special needs parent will tell you they hear on a regular basis.  And while the admiration is greatly appreciated, there is a nasty little secret I have to let you in on: most days, we barely do.  Most of us, most days, are clutching at a thin thread for dear life.  For a long time, I put on my happy face and went out into the world, but if I was going to really and truly be brutally honest with you: I was tremendously unhappy.  What happened to my daughter wasn't FAIR.  What was happening to our family wasn't FAIR.  What was on my shoulders wasn't FAIR.

And then something happened.  And I'm not going to try to explain it, and I'm not even going to delve into the background events that brought on this change, but the result of the past few months is that a light switch turned on in my head.  It was time to live like this:

Being unhappy is a choice.  And I have been choosing it for a long time.  And you know what that got me?  More unhappiness.  Because the world doesn't care if you are unhappy.  The only people who are being affected by your unhappiness are you and those who care the most about you.  It didn't matter what was FAIR.  This is what it is.  So how am I going to turn what I have into the best it can be?  How am I going to turn the ingredients of my life into a feast?  I realized I was starting with top notch components: amazing children; a hard-working, often neglected, partner; a supportive family; a tremendous circle of friends; and I was letting these ingredients go to waste.  And time was passing.  And I wasn't going to get it back.

So, then something amazing happened: When I turned on the light, I could SEE.  I could see the incredible blessings all around me.  I could see all of the good things that were coming our way that I had not been fully appreciating.  I could see the tiny miracles in every day.  And now I can truly say:

Thank you, friends.  Thank you for sticking by me through the dark as I clawed my way back into the light.  Thank you for holding my hand and crying with me and never making me feel like I didn't have the right.  I hope I can begin to return the light you have lent to me, now that I have found my own