Special Needs Spotlight: Leah

Jen:  I remember being so excited about seeing the
baby.  It was a Tuesday morning, and I was just shy of 20 weeks
pregnant.  The technician was very quiet through the ultrasound, and at
the end she sent us upstairs to meet with my doctor.  The doctor finally
came in and said those words that I’ll never forget.  “I’m sorry, your
baby has many anomalies, specifically the neck and spine.”  I cried so
hard I thought I was going to throw up.  We weren’t initially given a
diagnosis, and they were all so serious about it that I truly thought the baby
was not going to make it, or that it would die shortly after birth.  We
had a level 2 ultrasound the next day where they confirmed the Spina Bifida
diagnosis, but they still made it sound like this was the worst thing in the
world that could happen to her and us.  They told us there was a chance
she could have severe mental retardation and there was a possibility of having
no quality of life.  The hardest part was not knowing.  Everyone said
we would just have to wait and see, wait and see, wait and see.  The rest
of my pregnancy was difficult, and looking back I now realize how hard it was
for me.  I am thankful that I had that time to grieve, though, because I
needed it.  I was totally blindsided and walked around in a daze for a
long time.  I’m glad I didn’t have to deal with those emotions AND care
for a newborn baby who needed a lot of medical attention because I don’t know
that I would have been able to do that very well.

Now
that I see her and hold her and watch her grow, I can’t even stand the thought
of what if we believed them.  I can’t imagine her not being in my life and
not having the honor of being her mom.  There are still times when I
struggle with her SB, but it’s more about me than her.  She’s going to be
fine.  This is her life, it will always be her life and she won’t know any
different.  I have to come to terms with her life being different than how
I imagined it.  The sting is gone but the scar is still there.  That
being said, if SB comes with her, then I’ll take it because I want all of her.

Jen:  Right now it doesn’t have a huge impact on
our life.  She does not walk, so she is less mobile than other kids her
age.  We have to make sure we have her wheelchair when we go to someone’s
house and when she goes to daycare.  It takes me a few extra minutes to
unload the chair and get her into it than if she didn’t have it.  We are
always worried about her shunt failing, so if she is extra crabby or shows
other signs of shunt failure, we call her doctor.  Right now her mobility
isn’t a huge obstacle, but it will be once she is too big for us to easily
carry her around.  She’ll also need to use catheters and enemas for her
bathroom management program, which will take time and practice for us to incorporate
that into our daily routine.  The biggest thing for us recently has been
daycare.  We were recently turned away from our current daycare because
they were unwilling to accommodate her wheelchair and we had to find another
place.  Now I cannot even being to say how happy and blessed we are with
her new daycare.  It is amazing!!  I just wish we didn’t have to find
it in the way we did.  It was a clear reminder of her difference and a
fight that we weren’t prepared for this early.

Jen:  My biggest and greatest fear (and the one I
try really hard not to think about) is that she’ll be excluded because of her
disability.  I worry that kids will tease her and ignore her and not want
to be her friend because of it.  I also worry a little bit about my
husband and I being her parents, that we will help her too much or too little,
and that we won’t do the right thing for what she needs.  Then there are
silly, irrational fears like what if she is working on the 50th
floor and there is a fire, how will she get out?  How will she be able to
fly on an airplane?  We live in Minnesota and I worry about how she’ll get
to and from school or the bus or play outside if it’s snowing, which it does… a
lot.

Jen:  My husband and I have a pretty good sense of
humor and try to also see the humor in life.  She has had 2 brain
surgeries to place and replace her shunt, which involves her neurosurgeon
shaving part of her hair.  We joke that her “million-dollar hair stylist”
does a really crappy job.

Jen:  The main thing I want others to know is that
she is just like any other toddler.  She’s
going to fall down, get hurt, get dirty, be frustrated and frustrating, and oh
yeah, she also uses a wheelchair.  I like when people smile at us, or
somehow acknowledge us, like when I’m dropping her off at daycare or we’re in a
store.  She’s a cute kid and she likes to wave at people, so it’s ok to
wave back.  We also try to be protective of her equipment and not let
others use them as toys.  They are part of her whether she’s in her chair
or she has her leg braces on.

Jen:  There’s so much to love about Leah!  I
can already see that she has a kind heart.  She loves babies and
animals.  When she sees a stroller or hears a baby, she points and says
ba-bee.  We have 2 cats at home that she loves to pet, when they let her,
and she likes looking for the “minn-ahhs”, which is her word for cat (it’s how
she says meow).  Most of her words are animal sounds and she identifies
them by their sounds.

Jen:  I think the biggest lesson I’ve learned is
that we really are blessed.  Sometimes it’s easy to feel sorry for our
situation or wonder “why me.”  Then I look around and remember how much we
do have to be thankful for.  We have a lot of family and friends who love
and support us, we have an amazing home that will easily accommodate Leah and
her future needs, and we have the best medical care we could ask for.
There are more challenges, more fears, more worries with Leah than if she didn’t
have spina bifida, but it’s nothing we can’t handle.  The other lesson
I’ve learned is that I CAN do this, even though there were (and still are) days
when I wondered if I could.

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