Thursday, August 18, 2011

Jealousy

I'm sure that many of my friends with only typical children wonder if it is difficult for me to be around them sometimes.  If watching their kids (especially the ones who are similar in age or younger than Anabelle) reach milestones is too hard for me to see.  The truth is, not really.  In the beginning, it was.  When I still had not come to grips with Anabelle's disability, when I still had no idea what to expect from her, or how far she was going to be able to go, it was.  I even remember sending out a mass message apologizing to friends with new babies for not being as responsive to new photos of their babies as they may have previously expected from me, but I was still trying to come to terms with what had happened to MY baby.

I really don't struggle with my typical little friends anymore.  What is strange is that I now find myself jealous of other special needs kids who can do more than Anabelle.  It's like, "Okay, I know she's disabled, but does she really have to be THAT disabled?", or, "Look at (so-and-so), he has the same diagnosis as Anabelle, and he's playing with toys!"  I threw out the typical milestones, and found myself instead judging her against the milestones reached by her SN friends, and then getting frustrated when she couldn't do as much!  How sick is that???  I'm jealous of the kids who "only" have microcephaly, because they typically are higher functioning than the lissencephaly kids (Anabelle, in the overachieving way that I should expect from my child, has to have BOTH conditions).  I'm jealous of the liss kids who can walk and/or talk, even though I know that their parents will have to endure the additional heartbreak of watching their kids lose those skills over time due to seizures that wreck their bodies.  I'm jealous of any mother whose child has ever been able to say "Mama" or give her a hug or kiss.

So while I am legitimately excited for my SN friends when their child displays a new skill or reaches a goal in therapy, a part of me still goes, "Why can't that be Anabelle?"  Especially when lately, it seems so much of what we have been doing has been dealing with more and more complications and setbacks, when, at 15 months, she should still be moving forward.


But, I'm trying to not focus on any of that.  In the long run, I'm not sure how much it is going to matter to Anabelle how many skills she is able to gain, as long as we can keep her happy and healthy.  The only days I really worry are the ones when I can't make her smile.  Then I know she is "off".  As long as she keeps the smiles coming, I think we'll be okay

The glowworm her sister gave her the day she came home from the NICU is still a great favorite!

It is SOOOO funny that Mommy has been trying to get me to nap for 2 hours now, and all I want to do is play!

Haha, Sissy made us both wear these ridiculous outfits she picked out!

Sissy's a crack-up!

Tuesday, August 9, 2011

Road Trip!

In what may be a complete lapse of sanity, Anabelle and I set off on a 1400 mile round trip trek to visit friends in Ohio and meet up with some of our Anycephaly friends in Michigan. It had become so surreal to me to feel so close to people I had never actually met in person, it seemed important to take the opportunity to actually know these people in "real life".  Maybe we actually had nothing in common beyond our kids.  Maybe, in person, we actually had nothing to say, or couldn't stand each other.  We spend so much time sharing so much of our lives, I just felt the need to explore these relationships more fully.  Not to mention, squeeze some of the kids that I had fallen in love with.  The blunt truth is that our kids' futures are even less guaranteed than the average person, and I would never forgive myself if I lost the opportunity to hold some of my babies while I had it.

Not sure how much Sahil wanted to be cuddled, but damn it, he was getting cuddled!

One-on-one with my big guy, Will

So, as it turns out, everyone was exactly the way I had always imagined them to be, and the "virtual" friendships melded seamlessly into the real world.  While I definitely got to know everyone on a more personal level, there were no shocks or turn-offs that presented themselves.  Hope everyone else was saying the same for me...

Mommy friends

1 am party animals (clearly Anabelle is BEGGING me to go back to the room!)

There was something so easy and relaxing about being with all these folks.  We didn't even try an outing away from the hotel, because we all know the hassle of getting out with a special needs kid.  No one freaked out if they heard gagging or screaming, or saw a kid getting a tube feed or being vented.  Total everyday stuff for everyone there.  No one needed to apologize to people around them for anything, or explain what was going on.  We all share the same life.

Something else happened this weekend as well, that I hadn't anticipated in my focus on packing and what to expect during the drive and when I arrived, and that is that I fell in love with my daughter all over again.  On day three, I suddenly realized that I had NEVER done ANYTHING alone with Anabelle that did not include a hospital or a doctor's office.  This is the first time she and I were sharing an adventure in which she was not being poked or prodded or cut open or tested.  We were just HANGING OUT.  And she was in heaven.  She loved every second of the trip: staring out the car window as the sun splashed on her face, co-sleeping with Mommy, constant cuddles from all the other mommies and grandmas, listening to the noise of all the kids around her.  This was her kind of vacation.  And I got to see her through the eyes of our friends, as well.  As the youngest cephaly kid there, she was the overindulged princess.  These folks are used to looking at disabilities everyday, and they don't even see that when they look at her.  They see her smile, her chubby cheeks, her chunky legs, her hand raising in her own style of greeting, the way she turns into your kisses.  They aren't distracted by what she CAN'T do, and they reminded me to not allow myself to focus on that either.  
Cuddles from Miss Dawn

Anabelle and Grandma Lucy were two peas in a pod

Jacob Sting's cousin Addison and Anabelle were best buddies

Holding hands with Sahil

Mmmm, Alyssa's birthday ice cream!

Hanging out in bed with Mommy

Cracking up listening to Savannah sing

I certainly hope this was NOT a once-in-a-lifetime trip.  I was able to conquer my fear of travelling with Anabelle, everyone survived, and even thrived, and am hoping this is an adventure we will get to repeat again soon...