Did Anyone Get a Parent Manual?

A SPECIAL Needs Dad's Story.

GROWTH IN COMMUNITY

         22 November 22, 2002 - My wife, Paulette and I were expecting our second child and were a little nervous because the doctors said the baby was going to be a little small. Despite all of our ultra sounds for his low weight, we still did not know we were having a boy. We were pleasantly surprised when he was born at 5 lbs. 7 oz., 19 ? inches, and appeared healthy. The phone calls began as we told many about Kyra’s new brother, Garrett Joseph. Then about one hour later, life threw us a curveball.  Having always been straight fastball hitters, we missed it. The doctor sat us down and told us Garrett may have Down Syndrome. We tried to listen but could not believe it. No, you are wrong, it can’t be, why, what are the signs, he has to be fine! We were confused, sad, afraid, and angry. But as my daughter, Kyra told my Dad that day, “There is nothing to worry about. God will take care of us.” Still, we could not help thinking that this was not supposed to happen to us. Or was it?

I cannot tell you how many people have told us that if any couple could handle this, it is Joe and Paulette. I guess we take that as a compliment. But you see our strength comes from God, our families, our friends, our community. The support, love, and understanding that were shown to us are what gave us the ability to handle it.

 “Will Garrett be able to talk?” These were the simple words asked to Paulette by our then six-year-old nephew, Peter, about, Garrett. Thanksgiving would forever hold a new meaning. Paulette told him we hoped he would talk and fought back the tears. Peter continued, “I can teach him. I have already counted 16 people here that can teach him something.”

Out of nowhere people began telling us of there friends and relatives with Down Syndrome. No one knew what to say or do. They still don’t. It was then our eyes were forced open to a whole different community. A community that had always been there but I had never seen. We were now thrown into a world of doctors, therapists, and teachers. People who wanted to make a difference in the world and help others. People paying it forward. 

Since we’ve had Garrett, we like to sit in the “sign language side” of church and I can recall sitting over there a few months after he was born. I was feeling very overwhelmed with life and our newest adventure when Garrett pitched his first smile at me. It made me melt. I knew he was saying.

We can do this!  Garrett’s journey has not been easy.

In the summer of 2003 Garrett began having seizure type activity known as infantile spasms. It seemed as if we were at a different doctor every day. MRI, EEG, CAT SCAN, PET SCAN, CSPAN, ESPN ( just want to make sure I am not losing you guys).   It just was not fair.

23 – October 23, 2003 The Yankees were in the World Series against the Florida Marlins. Of course I stayed up to watch Jeff Weaver blow the game and went to bed pissed off. The next thing I remember is there is a guy from work in my bedroom and I am trying to crawl to the bathroom to puke. I can recall the township’s amazing volunteer first aid squad taking me down the stairs to the ambulance and to St. Joseph’s in Paterson. Apparently Paulette had found me having a seizure in bed. There was a rumor at the hospital that I had a torn up Jeff Weaver baseball card in my hand but that’s all hearsay.

God does work in mysterious ways. In my frantic search for a neurologist, we found a practice that would treat both Garrett and I. In total, over a span of two years Garrett, required approximately 12 nights in the hospital for video monitoring of his seizures. Fortunately, but unfortunately, there was no known cause for our seizures. We could only treat them with medication. I now have a connection with the community that many of my co-workers do not have. It’s a perspective I wish I did not have but I know someday I will know why I do. But truth be told according to the textbook definition I am an epileptic. 

What does that mean? In simple terms it means someone who has more than one seizure. In reality it is just a label. What is more important, by now being a person with epilepsy and a parent of a child with epilepsy, I could now relate first hand to the citizens of Wayne when I get called to their homes on these types of emergencies. On more than one occasion, I have given out my doctors’ information to these families.  Although I am still taking medication for this disorder, I am happy to say that Garrett has been off medication for three years. He is now 8 years old and still learning to talk. We may never know if the seizures, the medication, or just the Down Syndrome impeded his ability to speak. Still, without the care we got from day one who knows where he would be. Everyday we thank God for giving us Garrett.

16 - May 16 2007. Paulette and I were expecting our fourth child and were going to the doctor for some testing. She was sixteen weeks pregnant and carrying a little bigger than normal. Our daughter, Kyra, kept saying Mommy is going to have twins. The tech began doing her thing and stopped suddenly and said your daughter is right. I almost crapped in my pants. In two seconds it got worse when the tech ran out of the room for the doctor. “What is it are they attached at the head?” “No,” he said, “they have something called Twin to Twin Transfusion Syndrome.” Excellent, another Syndrome. We all were in shock, even the Doctor. I called my parents to let them know about our latest challenge. I felt myself losing control as I pulled away from the doctor’s office. I dialed Fr. Kevin’s cell phone knowing I had a better chance of getting struck by lightning then him picking up. You know what? He answered and I lost it. He met us at our house, we cried, prayed, and we got to work. Again we were thrown into a different community. But now we were forced with a life changing decision.

         In the simplest explanation, Twin to Twin Transfusion Syndrome causes one twin to take fluid from the other twin causing one to grow too fast and the other not to grow. This problem was out of the realm of our Doctor so he pointed us to some local specialists and eventually we landed at what I’ll call the Disney World of Hospitals, the Children’s Hospital of Philadelphia.   This team of experts has been dealing with our problem sat us down. You could have heard a pin drop when the Doctor began with the straightest face you can imagine, “Mr. Rude” “Yes,” I replied. Do you drink? It really broke the ice and they gave us our three options.

1. Do nothing and in all probability we would lose both babies
2. We could attempt surgery to separate the placenta but we were not a great candidate for this based on the positioning of the baby.
3. Selective Reduction - The safest choice for having one full term baby.

         Our resolution was made together in our little community: Paulette, Kyra, Garrett, Jake, and I. Our learning curve with Garrett was changing daily, and we knew that if one or both of these children were born with disabilities, life’s challenges would increase. Had this been our first pregnancy we might have taken our chances with the surgery to try to save both babies but we listened to our heads. We did not want to lose both babies.

           On June 1, 2007, Paulette had a surgery where one brother made the ultimate sacrifice for the other. We elected to have the reduction and lost a baby. The decision was not gut wrenching. We knew what we had to do. Maybe something in my past prepared me for this. I don’t know for sure. All I know is that on October 26, 2007, I helped in delivering a healthy baby boy, Brayden Luke Rude to the world.  He is the happiest kid you will ever meet. 

He is so happy he could be twins.

21 - September 21, 2008 I had decided to go to Chilton’s ER because I had some numbness on my left side and did not want to take any chances in the middle of the night. My parents met me there. In between getting poked and prodded, my Dad and I watched what we could of the last game at the old Yankee Stadium and they gave me a CAT scan finding nothing. They said it was nothing seizure or heart related but rather probably just muscle strain. I told them that made sense as I had been staining my porch the day before. A nurse,  I knew got me out quicker than usual; I called Paulette to tell her I was on my way and headed straight home. It was approximately 10:55 p.m. I pulled down the street and saw a strange orange glow in the driveway. Did the kids leave a light on in the basement? Oh my God there is a fire in my driveway!

         I have been a police officer four over 15 years and to countless house fires and that night I had to make the hardest decision of my life. From what I can recall, the fire had not spread yet. Can I put this out? My entire family is asleep inside. I was not 100% as my seizure medication had been changed and I just spent the last five hours in the ER, its dark out and time is ticking away.  I can do it. I run to side of the house where the hose has been for the last ten years, bring it to the gate and out towards the fire and “Shit!” I forgot to turn the water on.  

         Screw it. I got to get them out. I sprint up the newly stained porch and try to get inside. Where are my keys?  In the damn truck, still running. I begin banging on the door, ringing the doorbell. “Wake up! Get the kids out!” She is down stairs in seconds. We get the kids across the street to the neighbors who I apparently woke up screaming.  I back my car out of the driveway and contemplate running in for the home videos. A neighbor was taking her own home video while I watched in horror as the house that I helped build for over 10 years went up in flames.

         Looking back at the fire it was almost as if I was destined to give this talk about growth in community. It was surreal. Family, friends, neighbors all came running to see that we were ok. And we were. Still, we lost nearly everything in the fire—our home, our furniture, our clothes, cherished family possessions, photographs, and even one of our cars. But we immediately recognized our blessings because our entire family was physically unharmed. It’s truly a miracle that we all made it out of our burning home safely. God was watching over our family that night.

         The next morning after a sleepless night I returned to the house with my Dad. As we pulled up to the driveway it seemed as if my entire police department was there waiting for me to help do something. Who else was waiting in the driveway? Fr. Kevin.  It was a welcome sight. I don’t know how he got there but I was glad he was there with my Dad and me. As we stood there looking at the still smoldering remains of our home, a colleague from work offered me his car and I was completely amazed by this gesture of kindness, overwhelmed with grief and began crying in my father’s arms.

         The outpouring of support we received immediately following the fire was especially remarkable. We were humbled by the generosity and innumerable acts of kindness, both big and small, from people we know well and people we’ve never even met. Some sent clothes and toys so our children could return to school immediately and settle back into their everyday routine. Some brought us food so we didn’t have to think about what we would eat after spending the day sorting through the charred remains of our belongings.. Some sent gift cards and checks so we had the resources to quickly get back on our feet. Some spent many hours and days helping us get organized into our “new life.” As Matthew said in Book 6:34 : Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Our community helped us in so many ways and enabled us not to worry about tomorrow.

         This experience has reaffirmed our faith on so many levels—our faith in God, our faith in family and friends, our faith in community, and our faith in the kindness of strangers to lend a helping hand when the unthinkable happens. We hope that one day we can pay forward this remarkable generosity. 

  Without the community we would not have made it.   Since our fire I have been to three house fires in Wayne and knew a co-worker who lost her house in a fire. I now became the community and was able to give back to those people a little more than they will ever know. In the end, life does not stop. It is truly a climb. Keep the faith and God Bless.