A Beautiful Path: Me, You: Unexpected Gifts and Lessons of Love from Our Special Needs Son

By Maria B. Russell

When our second child, Mark was born on September 29, 1990 with severe mental and physical challenges, we had no idea what lay ahead. We were young and nave parents ready to take the challenges that lay ahead do our best. As parents, we think of all the things we want to teach our children. Never did we realize that mark would be the one teaching us the lessons of wisdom, perseverance, courage, piety and true love.

From the moment Mark was born our love was tested and tried by all the challenges of feeding him, sicknesses, hospitalizations and surgeries. Not for one moment were we unhappy that he was and still is with us. Mark has always been a bundle of joy and a privilege to have with us.

• Language: English
• Publisher: WestBow Press
• Release date: Nov 8, 2010
• ISBN: 9781449706760

Maria B. Russell

Maria Russell was born in Santurce, Puerto Rico and moved to Holliston, Massachusetts with her parents and 8 siblings during her teenage years. She now lives with her husband and six children in Bellingham, Massachusetts.

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Contents

Foreword

Many Thanks

Mark

Introduction

Mark’s Birthday

The Move

Diagnosis

Home Coming

Surgery

Post Surgery

Move to Public School System

Shunt Surgery

Communicating

Shunt Revisions and Surgeries

Middle School Years

High School Years

Prom

Mark’s Gifts

I Am The Child

Foreword

Although we never expected our life would turn out the way it did, having a child with severe mental and physical challenges, we are glad it did. We have grown immensely both as individuals and as a family and would never be who we are today had we not had Mark in our lives.

Life sometimes brings difficulties, and as painful as they can be we can choose to use them as opportunities to learn and grow or we can complain and ignore the problems ahead of us and never learn anything. I for one find life, the world, and people fascinating. I view life as a school where we are to learn and grow and it has always been my desire to learn and grow as much as possible. I believe we are here to become better people and help each other.

Mark has taught my husband, our children, and me lessons we would have never learned had he not come into our lives. He has shown us what is truly important. How to treat and love people all the time, how to make the best out of life and how to live it to its fullest. We are better because of him and will always be thankful and blessed to have him in our family.

It is not my desire to idolize Mark or put him on a pedestal. That is not my mission or purpose. I love Mark as much as I love my other five children. They are all special in their own way and each one has their own talents, beautiful qualities, gifts, and mission in life. Mark is who he is and I am trying to write as objectively as I possibly can and give the world a view of someone born with so many challenges and the beautiful road he has chosen to take in life. Even though Mark is my son, I greatly admire the person he is, his great courage, and love for life.

Many Thanks

We want to thank all the doctors, nurses, therapists, teachers, aides, and special needs bus drivers who have worked with Mark and made our life both easier and fuller because of their great care, friendship, and support.

In dealing with doctors in many different fields of the medical profession we have come across some great doctors who helped both Mark and us immensely by taking the time to listen and truly care about both Mark and our concerns. It was your care and listening ear that made it easier at some of the most difficult times. You treated Mark like the important person he is and tried your best to find a solution to Mark’s medical problems.

We want to especially thank Dr. Mark Libenson, Mark’s neurologist, who spent numerous hours talking to us in his office until we were comfortable with our decision about Mark’s much-needed hemispherectomy surgery. It was your time and care that made it possible for us to trust you and go ahead with the surgery. Also Dr. Alan Cohen, Chief Neurosurgeon at New England Medical Center, for performing the surgery. He has since left and been offered the position as the Chief of Pediatric Neurological Surgery at Rainbow Babies and Children’s Hospital in Ohio. Dr. Carl Heilman, Chief Neurosurgeon at Tufts Medical Center for your great care and expertise during all of Mark’s shunt surgeries and revisions. Dr. Harry Webster, also at Tufts Medical Center, for his rehabilitative care. For all nineteen years of Mark’s life you have helped him walk and have use of his right arm thanks to your expertise, wisdom, and great care for him. We will always be truly thankful.

Special thanks to my sister, Maria Amparo, for encouraging me to write this book and for her help. My friend, Mary Brennan, for editing the book. Without your love and support this book would not have been written. My husband, David, who has been there all along with me and has helped me deal with the difficulties we encountered along the way with his endless love and support. And to all my children for their coming together as a team to make our family work as beautifully as it does — thank you.

Mark

To a little guy whose heart is filled with pure

love and whose beauty shines

brighter than the sun, I send thee all my love.

In this little guy, I see through his eyes an angel

sent from heaven above,

especially picked by the Lord.

To this little guy, I thank thee for the lessons

you have taught me

which have been from the heart.

This little guy, whose strength is far greater than

most, I can’t help but call little puma.

Well, little guy, you’ve touched my heart in a

very special way and I must say I’m proud of

you and glad to know you.

Written by my sister, Maria, when Mark was one year old.

Introduction

The summer of 1990 had been the most beautiful and peaceful summer I had yet experienced. Life was perfect, as we knew it. My husband David and one and a half year old daughter Caeli brought so much joy into my life. Dave and I were both twenty-five years old and had been married for just two years. At the time we lived in a nice new condo, were doing well financially, and had no worries. I was now pregnant, expecting our second child, and I was thrilled. Becoming a mother was the most beautiful and fulfilling thing I had experienced up to that moment. Nothing gave me the same happiness or feeling of accomplishment as becoming a mother. I was in awe and my heart was completely full of gratitude and happiness. I did not sleep the night my daughter was born. I stared at her in my arms all night with amazement. Motherhood gave me a purpose in life I had not felt before. I loved everything about it from feeding her, to snuggling together and taking naps, to later playing with her and baking together.

Before getting married Dave had asked me if we could wait a year and spend time together as newlyweds before having children and I had agreed. After three months I was so ready and eager to have children I asked him if we could forget about waiting the rest of the year and begged to have me get pregnant right away. Seeing my love and enthusiasm towards getting pregnant and having a baby, Dave agreed. The following month I was overjoyed when I found out I was pregnant and expecting our first child. Becoming a mother has always been what I most wanted out of life. It was my dream. My love for babies and children has always been in my heart since childhood and I looked forward to the day I would have children of my own.

Caeli was born a very happy and easygoing baby. She rarely cried except for feedings and diaper changing and even then it was more of a quiet complaint letting me know she needed something rather than a regular’s baby cry. Most of that summer we had beautiful weather, cool and breezy with sunny days. Caeli and I spent most of the time outdoors enjoying the weather and each other. We filled the days swimming, biking, or walking outdoors together.

My younger sister Laura’s upcoming wedding added to my excitement and the joy of the summer. Her wedding date was set for September 22nd, just four weeks before my due date, which was October 12th. I enjoyed spending time with Laura as she planned for her wedding, especially since she had asked me to be her maid of honor. We became even closer as we spent lots of time together as she planned for her wedding. I accompanied her for her dress fitting, helped pick her cake and flowers, and was able to join her for other errands. During this time, Dave and I asked her and her future husband to be our new baby’s godparents. I was thrilled that they happily accepted and were looking forward to being godparents for the first time.

When Caeli was eight months old I became pregnant with our second child. Besides experiencing the usual fatigue of pregnancy the first three months and acid reflux problems throughout this pregnancy, I felt great all summer. Daily walks after dinner with my husband and daughter kept my weight down along with my cravings of salads and fruits. I felt energized and very peaceful inside especially by this pregnancy.

When I was three months pregnant we lost our health insurance plan we’d had through Dave’s construction job. Dave’s boss could not afford the increase in insurance rates and could no longer provide health insurance for his employees. We were not worried since Dave was working three different jobs and we had enough in savings to pay for the pregnancy and delivery. I kept the doctor’s visits and tests to a minimum. I wanted to undergo only the normal tests for a healthy pregnancy and avoid any extra tests we felt unnecessary. We both agreed that any tests that would indicate a child with genetic disorders or Down syndrome were not necessary. We were ready to accept whatever came our way.

One night when I was eight months pregnant, Dave and I were laying in bed talking about a conversation we had recently had with my brother and his pregnant wife who was due a couple of weeks before me. My brother, Luis Miguel, who worked for the Department of Mental Retardation as a caseworker, was telling us how he would gladly accept into his life a baby with mental retardation. He saw it as a blessing. My husband was commenting on what my brother had just told us and was surprised about the comment my brother had made and could not understand his feelings. He told me he did not comprehend why anyone would wish to father a child with special needs and that he felt incapable of dealing with all the challenges a child with mental retardation brings into one’s life.

On the day of my sister’s wedding I woke up exhausted because of not having been able to sleep most of the night. I was suffering from a condition called cholestasis of pregnancy, which causes severe itching in the last trimester of pregnancy, and which at the time went undiagnosed. I called my sister that morning upset because I wasn’t going to be able to spend the day with her as I had promised. The wedding was scheduled for 5:00 p.m., and I told her that I needed to lie down and rest since I had not