Just a little info about myself....I am a mom,
first and foremost, to 2 great kids, Miranda, 4 and Zachary 3. I have a
wide variety of interests, mostly involving the outdoors, and of course,
the web! I also write a little, and my side career is training horses.
Just an all around out west sort of girl I guess! LOL I am also blessed
with a very special child in my son Zachary. He has multiple disablilities
including mild cerebral palsy and a seizure disorder. Having Zach has truly
opened a new door in my interests, goals and outlook. It has become one
of my main goals in life to try to share as much information and offer
as much support as possible to other parents of special needs children.
So with that in mind I will share a little of my families story. Zach was
born 6 weeks premature in April of 1995. This was no surprise to me as
the pregnancy had been a complicated one and I had had a previous premie.
Although he was expected to do well, it was not to be. He had numerous
problems including jaundice, lung disease, and a bleed in his brain. When
he finally came home, his developement did not take the course that we
had expected, and he was started in physical, speech and occupational therapy.
Through these programs I met many wonderful people, and became actively
involved in an organization called Rising Stars Alliance that raises money
for children from birth through age five with a variety of disablilities.
During my web searches for information, I found my way to the MGH neurology
chat rooms, and met even more great people who became a wonderful source
of support in the ensuing months. Having Zach changed so many aspects of
my life, it was amazing. Especially when the seizures started. If any of
you out there are parents of a child with a seizure disorder, you will
know what I mean. Of all the challenges we had faced and won, the seizures
were by far the most frustrating. It took three months before we even figured
out the problem WAS seizures, it took another six months after that for
us to obtain a positive EEG, and then came the seemingly endless trials
of medications and tests, blood draws for medication levels, urine analysis,
metabolic screenings, the list went on and on. And in the middle of it
all was a little boy who simply could not understand why every time he
turned around someone in a white coat was poking him with a needle or giving
him medication that was supposed to help him sleep. We were very, very,
lucky. We eventually found a wonderful neurologist who knew how to LISTEN
as well as speak, and who most importantly knew when to say enough is enough.
We also had good results with a newer drug, Neurontin (gabapentin) and
I am pleased to say that Zach has been basically seizure free for nearly
a year. I guess the most frequent question I hear asked, addressed to me,
or from new parents of a special needs child, has to do with "normal."
Of course, our society is obsessed with beauty and normalcy, an intangible
status quo that by some unseen method we are taught from birth. In sleepless
nights and jaunts through my soul, I have come to see a new definition
of "normal." I asked myself questions I wasnt necessarily proud of, and
came to one conclusion that was right for me. When I decided to have children,
I vowed that I would love and accept them no matter who or what they grew
to be. Of course, I hoped like all mothers to raise happy, healthy individuals
who shared my values and achieved their goals. But that led me to realize,
was it their goals I wanted them to achieve? Or MINE. And so I decided
that no matter WHAT I would accept and support my children, and if I wasnt
prepared to do that, I wouldnt have them. I didnt realize how soon that
resolve was to be tested. So when someone asks me "Is he, well, ummm, normal?"
I say yes. Because he is completely, totally and utterly "normal" for Zachary.
He has achieved far more than anyone ever expected. He has done it all
with a smile on his face. He has loved unconditionally. He is a perfect,
beautiful and wonderful creation. And he is my son, no matter what. The
second most common question I hear is "why" Why me? Why my child? What
caused this? Was it that hot dog I ate in the first tri mester? Was it
my migraine medication? In any of our childrens lives, there are hosts
of uncertainty, an infinite number of whys. And while it is far less messy
to tie a problem down to a cause, most often that is not to be. The "why's"
of this life can drive one mad. I am not saying that it is wrong to ask
these questions, I believe it is a natural part of the process, the process
of growth and healing. And oftentimes we all come to different answers.
In our situation there was a host of incidents that could have caused Zachary's
trouble. The way I have dealt with that is to put the "why's" aside. And
to focus on the "how's" The hows that are a part of the solution, not a
part of the problem. The "how' to overcome a new days obstacle. Or the
"how" to fully experience the joy of a new accomplishment. These "hows"
have become far more important than any "why." I dont pretend that I can
solve all of my sons challenges. I dont pretend to have all the answers,
or think that I can make his life perfect. In a sense, I have no desire
to. I simply want to give him the foundation to meet HIS goals. I want
to teach, to nurture, to help him develope his special talents. This, I
believe, is the job of any parent. Even at the hour that I write this,
many, many questions remain unanswered. "Will he ever talk?" "What is the
real issue behind this symptom?" "Do we have an accurate diagnosis?" "Are
we on the correct path?" And, of course, I ponder these things, but most
importantly I focus on the daily joys, those triumphs so often taken for
granted or overlooked. To see him come cruising out of his bedroom in the
morning with his hair looking like a chickens butt and a maniacal grin
on his face. Therein lies the treasure. I have learned many important lessons
in my three years with Zachary. The most important one being patience.
For a red hed who knew no such word, used to accomplishing any task the
first time, and not waiting a minute over none, this was my greatest challenge.
Secondly, acceptance. Acceptance for the things that we are truly powerless
to change. Until Zach, I dont believe I ever knew the true meaning of
"powerless". A side of myself I refused to see through the vanity of youth
perhaps. But to watch your child convulse on the floor before you is to
intimately know what it is to be powerless. I am eternally greatful for
the gift that is Zachary. And the many, many lessons, joys, and trials
he has brought to my life. To all of you, this is simply a little piece
of me. Do with it what you will, and if I can ever, at any time provide
support, a listening ear, a shoulder, information, anything, I do so urge
you to contact me. Though I know not your faces, I can see you in my heart.
All the best, and thanks for reading!!!
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