Before I delve too deep into this, let me make one thing very clear…Ella is not difficult. In fact, she’s
really pretty easy. She follows
directions. If I tell her not to do
something she rarely does it again. She
doesn’t fight with other kids. She doesn't demand a whole lot. She’s
just really easy as far as typical kid things go. As far as her bandages, of course it’s not
ideal, but they have been a part of our lives as long as we’ve been parents, so
even doing her bandages isn’t really an inconvenience. Other families plan 15 minutes for a bath, we
plan 2 hours. It’s just the way it
is…it’s the way it has always been. When
you don’t know any different, it’s not that big of a deal. And her g-tube is much easier than people think it is. Instead of eating with her mouth, her food
goes directly into her tummy, no big deal.
With all of that said, I don’t want this post to sound like kids with EB
are a burden. I don’t know any EB parent
hat would tell you their kid is burden.
It’s simply not true.
We have several friends who have had a typical child after
having a child with EB. The consensus
among them all is that, comparatively speaking, a typical child is a piece of
cake compared to a child with EB. I
remember shortly after Ella was born, I would be talking to some other moms
about typical parenting things. Many
times they would complain about various items of parenting…having diaper
explosions, babies only wanting one type of pacifier, no sleep (obviously a big
one), the pain of nursing, and the list goes on. Every time I would sit in silence and think
to myself, “So this is what parents of typical kids worry about?”
Before AJ was born, I couldn’t help but wonder how parenting
was going to be different. What is it
like to not medicate your child before a bath?
What is it like to just put the kid in a bath without worrying about
wounds, bandages, pain, etc? What is it
like to have your kid actually PLAY during a bath and not just sit there and
cry? What is it like to feed a kid and
not have to count their calories? What
will it be like to just feed him and not have to use a special bottle to
prevent blisters in his mouth? What will
it be like to not stress about diaper brand and just be able to change his
diaper without making sure I have a stack of bandages nearby? What will it be like to be able to leave him
in the church nursery and not stay with him the entire time to ensure another
baby doesn’t hurt him? What will it be
like to not have to specifically train a babysitter prior to coming over? It’s weird to think of things like this. It was always awkward for me to hold a baby
that didn’t have EB. I’m so used to
being extra gentle that it’s odd to not think that way. And a part of me always cringes inside when I
see a baby rub his eyes because he’s tired.
Ella slept with soft socks on her hands until she was nearly 2 because
we wanted so badly to protect her face.
Ella was nervous too.
She constantly asked questions like, “What if he doesn’t like me because
I have boo boos? Will he think I look
weird because I have EB? Will you teach
him not to be wild and rough when we play?”
In fact, before AJ was born Ella had a meeting with a child psychologist
who helped her talk about some of her fears about having a “typical” baby
brother.
All of that said, parenting a non-EB child is completely
different. Everything he does is
different. Partly because he’s a
different child, but partly because we don’t have to be as cautious, so we give
AJ a lot more freedom than we did Ella.
He’s much more open to other people because we don’t hesitate to hand
him off. In fact, it is not uncommon for
me to pass someone in the hall at church and say to them, “Can I hand you my
son?” He is left in the nursery every
Sunday while Joe and I head to bible study and church, every Wednesday while we
are in class, and every Thursday while I am at bible study. I started feeding him babyfood sooner, started testing him out on baby biscuits sooner, and I started trying to let him
sit up sooner. I let him explore more,
and I let him get hurt more. He has fallen off furniture, pulled the baby gate down on his head, and climbed the stairs. Ella never fell off furniture and never pulled the baby gate on her head mainly because wherever she went someone was always right by her side.
On the other hand, poor AJ doesn’t get nearly as much one on
one attention as Ella did. He has to
cry more while he’s waiting for me to finish up with Ella or Sabrina. He spends more time in his exersaucer or door
bouncer so that I can finish cooking dinner or washing dishes. I don’t read to him nearly as often and we don't practice our shapes and letters as much. And to make matters worse, as the poor second
child, he has to use his sisters pink baby spoons, play with his sisters pink
baby toys, and has even worn his sisters pink pajamas.
As for Ella, she has adapted to sisterhood incredibly, and
is ok with her brother not having boo boos like she does. She has even said that she is happy he doesn’t
have to have EB too. AJ loves her so
much and she knows that he doesn’t care if she has boo boos. When he sees her, he smiles from ear to ear. When she kisses him, he grabs her face. When she says “Hi,” he giggles and coos. He has even started saying “LaLa” when she
enters the room.” Yes, the older he gets
the more we have to watch his actions around her. He likes to grab her arms and legs and doesn’t
understand that it hurts her. But we are
cautious and when he does grab we simply remove his hand and remind him to be
gentle. A simple gesture that we want
him to use on anyone, not just his sister.
