due date was April 12th, 2002 but he was born March 18th,
2002. We didn’t notice
there was anything abnormal his first 9 weeks of life.
Okay, besides the fact that we were first time parents and our
lives were suddenly unrecognizable, we thought everything was good with
the baby. We did, however,
see that when we were giving him baths he was belly breathing pretty
hard and fast but we thought he was just excited.
At his 2-month check up, we mentioned it to the doctor. The doctor looked at him then left the room came in and out
several times and told us to take him over to Children’s Hospital of
Philadelphia. They admitted
us overnight. The next day
we were told Jimmy had hypotonia (decreased muscle tone).
The neurologist said he could be delayed and will reach his
milestones later than usual or it could be as worse as he may never
walk. I thought this is
crazy! He is only 9 weeks
and I gave him an extra 3 weeks for his development due to his early
delivery. What the heck should he be doing at 9 weeks for heaven’s
sake? We were then
scheduled for an EMG. The
EMG tested abnormal. The
neurologist asked us to take Jimmy down to get a blood test done.
They were going to test Jimmy for a genetic disease but the
results would take 3 weeks to come back.
We asked for more information and were told it would be for
Spinal Muscular Atrophy. He
said not to focus on it - It was a terrible disorder.
They just wanted to rule it out.
This would be one of many tests.
The first thing we did was go home and look it up on the
internet. We were shocked
when we found out about SMA. And
if Jimmy did have it, he would be diagnosed before 6 months, which meant
he would have type 1. He
would not only not walk, sit up, hold his head up but he would DIE.
We shrugged it off at first.
After all, the triple screening stated that we had 1 in 10 chance
of having a child with Down Syndrome and that didn’t happen. Baby
Jimmy couldn’t possibly have beaten those odds but not beaten odds of
1 in 6,000. As time pasted,
I kept going back to research more about the disease.
The more I read about it, the sicker I felt. I remember reading a paragraph about SMA Type I and thinking
that they had just described Jimmy to a tee.
I kept emailing the neurologist for the results. I thought if they ask us to come in then that would be bad. I received a call from the doctor on July 2, 2002. He said that Jimmy did have SMA. I said, “So you are telling me our son will die by the age of 2.” He said, “most children struggle through their 1st year.”
The days that followed are a fog. We were numb. Our families and friends were devastated. We kept waiting for the phone to ring so the doctor could tell us there had been a terrible mistake. We kept waking up wishing it were a terrible nightmare. But each time we woke up – it was still there. We were sad. So very very sad. A piece of our hearts were ripped out – never to return again. This couldn’t be happening! We were good people! We did the right things in life! How could this be happening to us? Why not to a drug addict? Why did our baby have to die? We loved him - We would be good parents – we would give him the love that he needed. Why couldn’t this have happened to our 2nd child? Not that it would be any easier but at least we would already have a child to cherish. All our future plans and dreams were no more. Jim not only wouldn’t be able to take Jimmy fishing or play ball with him in an ordinary manner, because he was disabled…. He wasn’t going to be around long enough to fish. I could not wait until the day my baby could give me a hug – now that was never going to happen. Suddenly not being able to walk didn’t seem like that big of a deal compared to death – come on. Our little bundle of joy - Our little buddy - Our little bo-bo bear was only going to be with us for a short time. Why Why Why? I remember going to the mall that weekend to get pictures of Jimmy taken. I was so sad. This was supposed to be a happy time. Parents are getting snapshots of their children to add to their “one of many” collection. I was filled up wondering if it would be his last photo. If this would be the photo displayed at his funeral service.
a couple of days, we decided that we needed to be strong.
Jimmy knew nothing about SMA.
It wasn’t like he used to be able to do things and suddenly he
couldn’t. He was a happy
little baby. He was not sad
or frightened. So we
couldn’t be either. Jim
said, “we can be sad for us later”.
And that is the position we have tried to maintain.
We realized the drug addict might not be capable of the care and
love of child with SMA. If
God said give me back Jimmy and I will give you another son – SMA-Free
– would we do it. Absolutely not! We
love Jimmy. As unfortunate
as it is, SMA is part of Jimmy. We
love him for who he is, not for what he will never be.
We try not to think about what will never be but focus on the
good. Sure Jimmy may not be
able to go on a boat to fish but he has a play fishing rod set and with
our assistance is a pretty darn good crib fisherman.
He cannot wrap his arms around me but he can hug me with his
eyes. And I must admit,
it’s the most heartfelt hugs I ever felt.
We don’t cry in front of Jimmy.
We want everyday that he is with us to be fun.
We want him to remember his time on earth as a pleasant
experience. He is our little gift from God and we will treasure him each
and every day that we are blessed with him.
Sometimes we don’t even notice that Jimmy is different.
Different than what – this is the way Jimmy always was and
still is, and until they find a cure, will continue to be.
We no longer look down the road.
We live day to day. We
feel privileged; not only in knowing him, but also in the pride of
saying he is our son.
We are still hopeful for a Miracle. Obviously, the ultimate miracle would be a cure not just for Jimmy but also for all of the children and families suffering from this awful illness. If this is not God’s will, we do ask that Jimmy does not suffer. If he must go, let it be peaceful for him. Let him leave with the same little smile that lights up our days. We also ask for God’s guidance. We don’t want to prolong Jimmy’s life because we are not ready to let him go. We want to do best by him. We believe Jimmy will let us know when he is tired of fighting for life. We will follow his lead. We pray that when he loses that special little sparkle in his eyes we have the strength to give him our last outpour of love and kiss him goodnight for the very last time, until we see him again in a better place.