For
Max
“A
story about a boy”
Keep
on when your mind says quit, dream on to you find you’re living it, I’ll be
right by your side
Eric
Bibb
This
is the second blog I have written about my son. I strongly encourage you to
read the first, which can be found here: http://www.southpaw359.blogspot.com/
and it is called I’m a C.P Dad. Since
I gave background on my son Max in that blog, I will refrain except to say when
my son was about 16 months old, he was diagnosed with mild Cerebral Palsy. We
were told he had it mild, and he would walk and talk and be fine. That was
November 7th 2012. The day after the presidential election. I
remember the level of vitriol, on both sides was astounding. I am all about
patriotism, but I just kept thinking how someone can be this passionate about
something that at the end of the day affects their daily lives very minimal. This
isn’t a political blog, so I am only using this to point out that if
complaining about the president is your biggest problem, you are living a
charmed life. So anyway, as my previous blog said, Max began to make
improvements with therapy. But as of August 16th, 2013, he was not
talking. Flash forward to today. He is still not talking. Things have changed
in our life. I got new job. We moved. Max has a baby sister Samantha. Still no
talking. I’m not going to lie and say it hasn’t been difficult. It has. It is
the hardest thing that has ever happened to me, the hardest thing I have ever
gone through. My father died when I was 15. I almost died when I was 20 after
having spent 2 months in the hospital. This is harder than both. After 3 years
of being told he will talk when he is ready, my wife and I finally got some
real answers. We went to Boston Children’s hospital and Max had a neuro- psych
evalue. For some time, my wife Ashlee and I had our concerns that there may be
something else going on with Max besides the C.P. As we read about C.P, the
signs and symptoms all lined up with what we were experiencing with Max. But
there was other stuff going on. He did not really respond to his name. He does
not play with toys in the traditional way. While he loves to be around people
and kids, he is not active in playing games with them. And of course, the non
verbal part. Our initial thought was Autism. We asked several of his therapist
and several doctors. They all seemed to think that it was the C.P causing these
things. In my research of autism, which was basically me googling Autism, I did
notice that these symptoms were present in Max. The biggest difference was the
social aspect. Max loves to hug and kiss. He is very affectionate and loves
attention. Maybe it is just the C.P. But enough had been enough. We needed
answers. And on March 18th 2016, almost 4 years since he was
diagnosed with Cerebral Palsy, we received a new diagnosis; Autism.
I think when you first are told that you are going to have
a child, you just hope that everything is ok. But for fathers, when they are
told they are having a son, you begin to imagine doing all the stuff that you
got to do with your own father. Or if you didn’t have a father, you imagine all
the things you will do with your son that your father didn’t do with you. I
found out I was having Max on December 23, 2010. One of my favorite students
played me a song by Brad Paisley called Anything
Like Me. It basically talks about all the things that the father and son
will experience. I listened to it about 2 million times before Max was born.
Some of the best memories I have with my father are me and him, just being
together. Like when I was 6 and he took me to see the greatest basketball team
of all time, the 1986 Boston Celtics. He dismissed me from school and we ate
lobster in Boston before the game against the Sacramento Kings. Or when I was
12 and we went on a Tuesday night to the movies to see Rudy because of how much I loved Notre Dame Football. Or the last
movie we saw together, Get Shorty,
another dismissal my freshman year of High School. I will never forget the day
before I started High School. We went to lunch at the El Morocco, went to the
mall and bought all my school clothes, and he taught me how to tie a tie. I
cherish those memories. But the most important things I carry are the times
playing catch in the backyard. Shooting baskets in the driveway. Watching The
Red Sox, Celtics, Patriots, or any boxing match we could get on Pay per View.
Or my favorite; laying in his bed, and having him tell me stories about his
life, or about any subject that I wanted to know about. I thought about all
this those months before Max was born and couldn’t wait to be able to do the
same with him. I want you to know, I love my son more than anything in the
world. I would die in a heartbeat so he didn’t have to feel one once of sadness
or pain. I read a lot of blogs and articles written by parents of special needs
children. They all end the same way; they wouldn’t change a thing about their
kids. And I get that. I really do. But I would be lying if I didn’t say my
heart is broken over our situation. I am angry and frustrated and sad and
scared. I feel helpless on good days and useless on bad ones. I can’t help but
feel I had so many dreams ripped away from me. Watching him play organized
sports are gone. Being a typical kid is gone. There is a good chance he will
never live on his own, never go to college, never get married and there is a
good chance he will live with me the rest of my life. And I can live with all
that. But to say that it hasn’t broken my heart is not the truth. It has. The
worst feelings are the ones I get when it is well after midnight and I haven’t slept
yet. I have to get in a few hours for work and I stare at the ceiling. I think
about his safety. Will kids be mean to him? Will they hurt him? How long can I protect
him? I don’t want to cry or yell. I just want to vanish. And that makes me feel
guiltier than you can possibly imagine. I once heard someone say it’s a cash
and carry world. Pay as you go. Sometimes you only pay a little. Mostly it’s a
lot. Sometimes, it’s all you have. I never cared about being famous. I am the
furthest thing from materialistic. I am not the smartest guy or best looking
guy you will ever meet. All I want is to hear my son call me Dad. I’ve waited
four years so far. I’ll wait four hundred more if I have to.
I do not want this post to be negative. I understand that
some people have it way worse than me. I know how lucky I am to have my son. Anyone
who knows him knows how much happiness is in him and how much joy he brings
people. As hurt as I am I would not trade Max in for anything in the world.
Sometimes, I just don’t know what to do. So I think of a quote from my favorite
movie Shawshank Redemption. Andy
Dufrense says it best. “It comes down to a simple choice really. You either get
busy living or get busy dying. After four years of waiting, four years of
hurting, I think it’s time to get busy living. We are on a path now. Max will
finally get what he needs and what he should have been getting all along. I am
hopeful that one day I will walk into my house after school, like I have done
his whole life so far. I will say hi buddy like I do every day. He will look up
at me and smile like he always does. But in this scenario he will say Hi Daddy
back. On that day, there will never have lived a richer, happier person on
earth. I think often about what I have gained and what I have lost. I always
thought I was strong. My favorite trait is perseverance. Max has taught me more
about that word than I ever thought I could have learned. I couldn’t wait to
teach my son everything about the world. What I didn’t know is that I would be
the student and he would be the teacher.
