I sometimes get asked how our life has changed since Lexie
has come along. Many times I think they just want to ask if our life is as bad
as they think it is. Not bad as in living in a daily piece of hell, but just the
constant knowing that you will always have a special needs child. How her
appointments/therapies affect our daily lives, whether we feel like we have to
do more to accommodate her and if we are prepared for what the future throws at
us. I have said this before and I will always say it again. Children regardless
of their need are always in need of accommodating parents. Yes, I expected to
be running back and forth between school, playgroup events and extracurricular
activities. Of course we did not expect
the surgeries, therapies, special gear, and the constant dependency. Does it
mean that it is really bad? No, just different. We became parents because we
wanted our own children to love, not because we wanted to feel imposed or
bothered by them. In all honesty, Eric and I don’t feel like we or any parent
should feel like they sacrificed anything for their children. It should always
be given willingly and lovingly. The past two years with Lexie have been great!
There were ups and downs but our life has definitely been enriched with her and
I only hope people understand that when they see us struggling during those not so
grand times. For instance, like now.
When I found out I was pregnant, Eric and I knew we could
easily have another special needs child. We have seen many families who have
had one special needs child and go on to have healthy children. However, my own
senses told me that if I would think it could not happen again would be foolish.
We had the same odds regardless if we already had a special needs child or not.
We know from all of the genetic make-up we had done when Lexie was born that
the chances did not grow nor diminish. I can maybe shoot off on one hand the
number of families who have two children with hydrocephalus. However, I can’t
and neither can my doctor say how many have two kids that are different genders.
It is that small. We were told the chances didn’t increase, but they also didn’t
decrease. Life does not hand out a punch card when you are born. Just because
you have the “special needs parent hole” punched out doesn’t mean it can’t or
will not happen again. I am sure you are
getting the picture, but I going to just lay it out for you. We have found out that our son also has
hydrocephalus. Yup, we now have two healthy children and will have two special
needs children. When we first spoke with the doctor, she said so calmly, “Ma’am
the chances of that happening again are really low, I don’t think it should be
that much of a concern.” My reply was short and sweet, “Regardless of what you
say, my mind will not be convinced until I see the brain scan on the
ultrasound.” We did see the brain scan that day and before the doctor could say
anything, I said, “Yup those vents are too big.” Unfortunately for her the
brain scan was not at all what she was expecting and I could see the remorse in
her face.
Close friends and family can tell you it was a hard day, but
not one that was totally out of left field. Doctor Faucett, who is the High
Risk OB, and who also happened to be my doctor during Lexie’s pregnancy was in
shock. Many times some doctors can act a little smug, but I remember him just
sitting there trying to grasp on to the situation. He looked just as perplexed
as the doctor at the ultrasound. I remember him repeating to himself…a boy with
hydro, you would think x-linked but maybe not because the sister has it as
well. (Only boys can carry the X-linked gene) It was somewhat perplexing
watching him try to give Eric and I a solid answer, but we all knew it just was
not there. He is a fantastic doctor and I am quite sad that we will not be able
to see him throughout this pregnancy. We have already been through so much that
he feels more like a great friend than just my doctor. I think it helps because
he is used to my candor and bluntness. Here is a sample of a conversation
between us to give you an idea.
Dr. Faucett- If anyone can do it, it is you! You guys have
such a great attitude and have adjusted wonderfully to life with Lexie.
Me- Because we had too! We didn’t have much of a choice!
Dr.- Who knows…Maybe a long time ago you made a deal with
God that instead of having a horrible person like Hitler as a son, you would
have two special needs children.
Me- Well, that will be last time I drink with God
again! (Dr. Faucett is a devout Mormon
so I had to include alcohol in there somewhere ;)
See!! Where am I going to find a Doctor that I can tell off
and joke with all at the same time??
If you know me and aren’t already convinced that I am one
crazy person, this may just do you in. My brain works differently than other
people!
I am a HUGE fan of the Cosby show. I am 99.9% sure that I've seen every episode
at least 5 times. I was raised watching the Cosby show and they just seemed like the
best family. You had two people who had the best marriage and were constantly throwing
themselves at each other while still being very devoted and at times unusual
parents. In one episode Vanessa brings home her Fiancé Dabnus for the first
time. Her parents had no idea she was even seeing anyone and not to only make
matters worse he is much older and has way more experience with the opposite sex than her parents
would like. Even though he seems like a great guy, has a good job, and seems to
have his head on straight her parents aren’t amused. Whenever I think about life with a special
needs child, I think about how Dr. Huckstable used a steak and a trash can lid
analogy.
Dr. Huxtable: Do you like steak?
Vanessa’s Fiance: Yeah, I love steak.
Dr. Huxtable: A Porterhouse. Juicy… nicely
marbled.
Vanessa’s Fiance: Absolutely.
Dr. Huxtable: You like mushrooms?
Vanessa’s Fiance: Oh yes.
Dr. Huxtable: You’ve got
mushrooms… and onions too. How about a baked
potato?
Vanessa’s Fiance: Yes sir.
Dr. Huxtable: With sour cream? Lot’s of
fixings. Can you taste it son?
Vanessa’s Fiance: Yes sir.
Dr. Huxtable: Now let’s say I come out of the kitchen
with your perfectly cooked steak, and all the
trimmings on a garbage can lid. Not
so appetizing is it now? Son, that’s how you were brought into this
house. On a garbage can lid.
Basically
something so good can be presented so horribly. How people can only see the trash
can lid (special needs) and not see the steak (Our beautiful child).
Did
I just refer to a steak as a baby and the trash can lid as the special need?
Yup…see I told you my brain is a weird place… you had fair warning!
Despite the weirdness of this analogy it just always
resonated with me. You’re given this beautiful child thinking this baby is going to be just
how you pictured your baby to be. You start to imagine all of the wonderful normal childhood moments,
their wedding, and finally watching them have their own children, but then you
are presented with a child who has special needs that just may never get to do
any of those things. The delivery of this child is completely different than
what you expected. It doesn’t look as healthy but it is still your loving child
and in your eyes will always be perfect. Unfortunately, with our children we
still have to carry around that trash can lid everywhere we go and deal with
the perception that many people will have about our life. Only assuming
how my life is and showing your pity will make me think you don't get what is
truly important. I HATE
Hydrocephalus with a passion but I love Lexie and our son more!
