Embracing the Journey: A special-needs child's remarkable story

By Rick Schirmer

Matthew was born in September of 1997 with a rare genetic disorder called trisomy 22. His parents were told by the genetic director that he would be severely mentally retarded and never walk, never talk, or have much of a life, that they should not waste their time caring for him and put him in an institution for care. He has endured fifteen surgeries, thousands of therapy sessions and requires 24-7 care. Although he is now twenty-one years old and cognitively he has developed only to the level of an infant, Matthew has proved the genetic director wrong in many areas. He is one of the happiest boys you will ever meet, has positively impacted the lives of so many, and continues to live a very rewarding life. His life journey has provided so many tremendous lessons that can apply to everyone, and certainly to parents of a handicapped or disabled child. Matthew's journey showed his parents and all those fortunate to interact with him that laughter is much better than crying, that any simple gesture of kindness can move mountains, and that there are many special individuals that will make a significant impact on a special-needs child's life and their family's life if given the opportunity.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Aug 21, 2019
• ISBN: 9781684566587

Book preview

Never Do What?

He will never walk, never talk, and not have much of a life.

—Genetic Director, Children’s Hospital

He will never walk, never talk, and not have much of a life.

This is what the genetic director at Children’s Hospital told us a few days after Matthew was born.

Matthew was born in September of 1997, and all seemed to be going well with his delivery and birth until we noticed a shocked look from the OBGY delivering Matthew. My wife, Helen, barely had a chance to hold him when they instructed us that Matthew had to be immediately transferred to Children’s Hospital for care. With all the excitement and movement in the room of the staff getting Matthew prepped for the transfer, no real explanation was given to us except Matthew had some issues that only Children’s could address.

Within thirty minutes, I was leaving the bedside of my wife who had just gone through twenty hours of labor to follow our newly born son to another hospital for medical care. When I arrived and finally was able to corner someone on what was going on, they instructed me that Matthew was born with an imperforated anus and he had to have surgery for a colostomy immediately for him to survive.

Somehow my wife, Helen, was able to get released from the hospital just a few hours later and joined me bedside at Matthew’s crib in the intensive care unit. Our journey to Holland had begun.

For the next three weeks, one of us was basically at Matthew’s bedside in the ICU trying to sort out what just had happened and what this all meant for Matthew and our family.

Matthew was quickly tested for genetic issues, and we found ourselves being pulled into a very dark, sterile room with the genetic director to discuss the findings just a few days after his birth.

The director told us that Matthew had a rare genetic disorder called trisomy 22 and that he would be severely mentally retarded. When we asked what that meant, he issued the words that soon became our rallying cry for Matthew: He will never walk, never talk, and not have much of a life, and you should just send him to an institution for his care and not waste your time on trying to help him.

Wait, what? Really, did he just say that…

He will never walk, never talk, and not have much of a life, and you should just send him to an institution for his care and not waste your time on trying to help him.

He said it about as matter of fact and as cold as you could say it… I guess there was no compassion training while he was getting his degree. I asked what do you know about trisomy 22? He did not know anything other than it would cause mental retardation. He quickly left the room and my wife, and I looked at each other in shock.

Within hours, we had searched the internet on trisomy 22. We found only about 150 documented cases in the world, and in almost every case, the child died shortly after birth or within the first two years of life. Well, what the genetic director failed to tell us on the first encounter was that Matthew had a partial trisomy 22 translocation.

We soon found out that Matthew was going to write his own book on his genetic disorder.

Believe it or not, we have never searched for this disorder again on the internet. We were going to live this journey in real time with Matthew.

As cold as that genetic director was, we were extremely fortunate to encounter someone who was just the opposite at Children’s—compassionate, caring, and supportive. I am not sure exactly what her title was but believe she was a counselor, probably in place to clean up the director’s interactions with parents.

She provided us a lot of information on various resources to get things going with Matthew once we left the hospital, and she shared with us one piece of information that quite frankly would ultimately shape our lives in a very positive way.

She provided us this eloquently written poem, Welcome to Holland, written by Emily Kingsley.

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I have probably read this poem over one hundred times, and each time my eyes still tear up. Wow, how could she write this poem that absolutely described our feelings and set the stage for our journey to Holland.

We shared this story with all our family and friends to shed some light on how we were feeling and help describe how our life would be spent in Holland, and yes, most, if not all, of them would still be living their lives coming and going to Italy.

To this day, I am not sure how many of our family and friends understand the meaning of this poem and how our lives are spent in Holland. I guess, for the most part, it is not really a surprise. Most of them only see Matthew and our family in various settings and are not exposed or in tune with all the behind the scenes things that take place.

We have shared this poem with many other families that we have encountered with special-needs children, and it always seems to strike a chord with them, and they can relate to the meaning of the poem.

As you will find out in the upcoming pages, Holland is a good place and can be filled with happiness if you approach it the right way. Also, with a little creativity and perseverance, we have been able to experience a little of the fast-paced life of Italy although we know most of our life will be spent in Holland.

Surgeries – Piece of Cake

We wanted to give Matthew every chance possible that he could walk one day.

—Decision on major surgery

Istood next to Matthew while he was lying on his changing table, trying to gain the courage and strength to help his recovery for nearly an hour. I finally was able to muster the courage to insert a cold steel rod in Matthew’s newly constructed anus. Knowing the pain that this would create for