"For the Love of Matthew" Growing up with Down Syndrome

By Janice Credit Houska

The story of Matthew begins in the labor room when he is born at just 4 pounds 10 ounces. Happiness abounds until the next day, a doctor tells the parents he suspects Matthew has Down syndrome.

What follows is an anguish that only a parent who has been through this would understand. The process of grieving for the loss of a normal child is followed day by day until the determination to make things right takes the place of guilt, sadness and anger. Matthew's mother's determination and belief that her son could learn anything (even though the doctors gave the parents little hope for Matthew abilities to learn or even being able to take care of himself) proved the "experts" wrong. Her methods are outlined in the story, which included mountains of word cards and a constant flow of stimulation. He was reading his first few words at three years old and by the time he was ten he was playing the piano. Matthew's story tells of the hills and valleys one encounters in daily life, in school and in the community. You will share with Matthew the anguish at the death of a cherished grandmother, a dear grandfather with alzhiemers and many other tragedies that dot his young life. The story tells of his experiences in school, from preschool to high school, which is a mixture of highs and lows. His talent in music is realized and by the time he is seventeen, he is playing the piano,harmonica, xylophone and guitar.

Heartwarming, sad, funny and a must for parents who are facing similar challenges.

• Language: English
• Publisher: Trafford Publishing
• Release date: Nov 16, 2002
• ISBN: 9781426968273

Janice Credit Houska

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Book preview

For the Love of Matthew

Growing Up with

Down Syndrome

By

Janice Credit Houska

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© Copyright 2011 Janice Credit Houska.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.

Printed in the United States of America.

ISBN: 978-1-5539-5171-1 (sc)

ISBN: 978-1-4269-6827-3 (e)

Trafford rev. 05/11/2011

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Contents

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Chapter Seven

Chapter Eight

Chapter Nine

Chapter Ten

Chapter Eleven

Chapter Twelve

Chapter Thirteen

Chapter Fourteen

Chapter Fifteen

Chapter Sixteen

Chapter Seventeen

Chapter Eighteen

Chapter Nineteen

Chapter Twenty

Chapter Twenty-One

Chapter Twenty-Two

Chapter Twenty-Three

Chapter Twenty-Four

Chapter Twenty-Five

Chapter Twenty-Six

Chapter Twenty-Seven

Chapter Twenty-Eight

Chapter Twenty-Nine

Chapter Thirty

Chapter Thirty-One

Chapter Thirty-Two

Chapter Thirty-Three

Chapter Thirty-Four

Chapter Thirty-Five

Chapter Thirty-Six

Chapter Thirty-Seven

Chapter Thirty-Eight

Chapter Thirty-Nine

Chapter Forty

Chapter Forty-One

Chapter Forty-Two

Chapter Forty-Three

Chapter Forty-Four

Chapter Forty-Five

Chapter Forty-Six

Chapter Forty-Seven

Chapter Forty-Eight

Chapter Forty-Nine

Chapter Fifty

Chapter Fifty-One

Chapter Fifty-Two

Epilogue

Chapter One

The stark white ceiling tiles in the labor room stared back at me as I tried to find a focal point to ease the intensity of the contraction that was beginning to take hold. I squeezed my eyes shut waiting for the pain to subside, and then wilted against the cool white sheets, knowing that within minutes another pain was steeling itself for another brutal attack. Sun filtered through the pleated drapes showing the hint of a clear August day, the kind one looks forward to all winter long. I had spent the summer with waterlogged ankles, heartburn, leg cramps, backaches and a short temper.

It can’t be much longer. I wept. I had already been in labor for nineteen hours, already longer than I was ever in labor with my other two children. Clint, my 16 year old was born after an eight-hour labor, and Todd, my 14 year old treated me to a difficult ten-month pregnancy, but a short five-hour labor.

I can’t take much more! I said through clenched teeth as I hung onto Ron’s hand, a little too hard.

Soon, it’ll be over… I kept repeating to myself. Ron looked at me with a furrowed brow, not sure what to say to reassure me. He had been jarred out of bed at three am by a hysterical woman. I had been having irregular contractions since noon the day before and I was getting a little cranky.

I think it’s time to go to the hospital. I whimpered to my sleepy husband.

Are you sure? he asked wearily.

Do I sound like I’m kidding? I cried while clutching my swollen belly. The pain had become unbearable and I was bent in two. Ron had every reason to doubt the validity of my outcries. I had been experiencing Braxton Hix contractions, or false labor for the past few weeks, and I was still five weeks from my due date. But this time the pains were intense and were coming regularly every ten minutes. Actually, I really wasn’t ready. My suitcase wasn’t packed, but it was more than that. When I met Ron, I was a 37-year-old widow with two boys ages twelve and fourteen. I was a teacher in Fordville and I loved my first and second grade class. My sons were growing up fast, and I was happy at the prospect of having more independence. But, I fell in love with Ron, and when we married a year later, I knew that if Ron wanted a child, then I wanted to give him one. He had been a bachelor for 40 years, and I knew a child was important to him. But, two months after we were married and I found out I was pregnant, I didn’t know how I felt. It was a frightening thought. I was 38 years old. I had been 23 and 25 when my boys were born, and I was aware of the risks of having a baby at my age.

After Doctor Eaton examined me, he ordered an ultrasound to check the baby’s size and position. Upon reading the results he announced, We are going to try to stop your labor, Mrs. Houska. Your baby is only about five pounds, and I’d like you to try to go full term if at all possible. A wave of nausea swept over me. Do you mean you want me to go home, and start all over another time? I was exhausted beyond reason, and the thought of starting this process all over again after all these hours of labor made me want to cry, but I knew what was important to my baby’s well being must take priority. A drug was administered through my IV and the contractions grew milder and milder until they literally stopped for almost an hour. Then, without warning, they started up again, this time with a fury. I was to endure another seventeen hours of back labor, the last few of which are just a blur. I was not given any pain medication to ease the pain, as the baby’s size was considered. In order to ease the pain of the labor, the nurses kept telling me to breathe properly, cleansing breaths, shallow breaths, and relaxation breaths. Well, Ron and I had attended only one Lamaze class and had planned on natural childbirth, but breathing techniques had not yet been covered, so we had on the job training. I had not been schooled in the fine art of breathing, and became a little testy when they kept insisting I was not breathing properly. When my older sons were born, no one told me to breathe any which way. They just shot me full of painkillers and blissfully, the babies were born without me having to go to school to learn how to do it!’

My friend Monica called me in the middle of it all, and when she heard the rhythmic sounds coming from the monitor, she got all excited and said, Is that the baby’s heartbeat? When I told her it was, she said, It’s the baby! I couldn’t talk long, as another contraction tore into me as I yelled into her ear. "I’ll call you when it’s all over, I promise!

Finally, after almost 36 hours of labor, I was happy to hear that I was fully dilated and ready for delivery. Once in the delivery room, it went very fast and Matthew Joseph Houska was born at 10:41 pm, and weighed only four pounds ten ounces. I will never forget the look in Ron’s eyes when he realized he had a son.

The delivery room was unusually quiet and busy immediately after the birth, which made me a little nervous. Matthew was put on a table away from me, and the nurses were busy with him, suctioning his mouth and nose, checking his heart rate, respiration, muscle tone and reflexes. I waited anxiously to hold him, but because of his size, he was put into an isolette for premature babies. I was anxious to meet this little one who was in such a hurry to come into this big world of ours. Very little was being said, and I was becoming increasingly nervous at the intensity of the staff. I was still on the table, and while the doctor was busy with the postpartum routine I was desperately trying to catch a glance at my youngest child.

"Is he all right? I questioned nervously.

Everything is fine. The doctor said, but he wasn’t smiling, and he didn’t look me in the eye. I tried to prop myself up to see my new baby and noticed that he had an unusually rosy complexion and he was so tiny. This time I questioned the doctor about the color of my baby’s complexion. Once again, he reassured me that nothing was out of the ordinary. I tried to relax, and believe that Matthew was all right. After all, if the doctor said he was fine, I was very happy to believe it. I felt relieved to know that he was a perfectly normal baby boy. Ron and I smiled at each other, feeling complete happiness at the birth of our son.

Since Matthew only weighed four pounds ten ounces, he was put into as isolette and then taken directly to the nursery. It was after 11 pm when I was taken to my room, and we still had not been able to see Matthew or hold him. Ron and I were both exhausted, after the long arduous labor of the past thirty-six hours, but we felt excited and exhilarated. A new life had entered the world this August 21st and our lives would never be the same. We thought of the wonder of this small child, and all the possibilities his life would hold. Our dreams were without limit that night, as we thanked God for a beautiful son. The nurse came in and gave me something for pain and Ron left to go home for some well-deserved sleep and to tell Clint and Todd about their new baby brother.

At three o’clock in the morning, I woke up and just had to see my baby. So, I eased myself painfully out of bed, put on my robe and slippers and shuffled down the hall to the nursery. There he was, so tiny, so sweet sleeping peacefully looking like a little angel from Heaven. I reached inside the isolette and touched his tiny fingers and said, Hello my little Matthew. I’m your mother, and I’m going to love you forever.

Soon, my legs became weak and started to buckle. Pat Wangler was there, and after scolding me for getting up by myself, she eased me into a wheelchair and strolled me back to my room, and tucked me back into bed. I relaxed, and was able to get some sleep feeling an immense love in my heart for the child I had just met.

The next day I awoke excited and happy. I put on my prettiest nightgown, brushed my hair and put on a little makeup. The day was filled with flowers, telephone calls and visits from family and friends. We were able to hold Matthew for a little while, but he needed to be in the isolette for most of the time. I tried to breast feed him but he was more sleepy than hungry. He was like holding a little doll. Clint had weighed six pounds, nine ounces, and Todd weighed eight pounds, eleven ounces, and with so many years in between, one forgets how tiny newborns are, especially when they are preemies. Matthew was wearing a knit cap, and was wrapped tightly in a powder blue blanket. He had a mass of dark hair, just like his father’s and it turned about his ears and neck. He cooed and slept and looked back at his Mom and Dad as we admired his every feature feeling an exhilaration that only comes when you look at your child for the first time.

I talked to my Mom and Dad in Florida to let them know about their new little grandson. I had called while I was in the labor room, and they were anxiously waiting to hear from us. I was hoping they would not be disappointed that we did not have a girl, but my Dad put that fear to rest.

How could we ever be disappointed? He told me. We are very happy, and glad that you and the baby are all right.

I called my brother in California and several other friends and relatives with the happy news. I didn’t realize at the time how much I should be cherishing those moments.

Nobody has ever measured, even poets, how much a heart can hold.

Zelda Fitzgerald

Chapter Two

The day after Matthew was born, Ron’s mother, Valerie, his sister, Elaine, her husband, Forrest and Matthew’s two cousins, Ben and Joellen came to see the new baby and me. Monica was there bearing gifts for little Matthew. Ron was the typical proud new father handing out cigars and as everyone went to the nursery window to look in on little Matthew, there was fun, laughter and congratulations. Suddenly, a nurse whisked into the room and said, The doctor needs to talk to the both of you right away. I was startled by the urgency in her voice. She then asked everyone to wait outside while the doctor talked to us. Dr. Kotnik walked in and sat down. We were surprised that it wasn’t Dr. Eaton and wondered why

He first explained that Matthew’s skin color was due to the presence of too many red blood cells, and that he would have to be transferred to the Grand Forks Hospital to be treated for the condition. He went on to say that Matthew would be leaving within the hour by ambulance. While I was trying to absorb this, he took a breath, and uttered a sentence that will resonate in my brain forever.

I also suspect that your baby has Down syndrome.

The words were a piercing blow. If I had been struck, it would have felt the same.

Are you sure? I stammered weakly.

Not completely, he answered, A chromosome study will tell us for sure.

But, what makes you think he has Down syndrome? demanded.

Your baby has certain characteristics that are commonly found in babies with Down syndrome, such as a laxity in his joints, hypotonia (poor muscle tone), the crease in the palm of his hand and the separation between his toes.

"How bad? I wanted to know.

We have no idea at this time. He could be profoundly retarded and have physical defects as well. We will spend the next few weeks running him through tests that will give us some of those answers. Other questions will have to wait until he is older and we see how he progresses. While he is in Grand Forks, the chromosome test will be given to determine if he in fact has the extra chromosome that would indicate the condition known as Down syndrome. It would take six weeks before we would have the answer. Although there is a chance that it will come back negative, I feel almost certain my suspicions are correct.

The doctor left the room,