As I sit here to try and put into words the story of Andrew and our family and the past 30 years, I understand that few, if any, of he wonderful experiences we have had would have been ours if not for him.  Andrew is the reason for our journey in the world of disability, our source of inspiration as we face the joys and challenges of living each day to the fullest.  I know that my husband and I and our children are who we are in large part because of the privilege of having Andrew in our lives.

Andrew is our second child and son, younger brother to Christopher.  As I look back on my pregnancy and the months leading up to his birth, I realize that I knew in my heart, as only a mother can, that our lives would be different when Andrew was born.  Yet, after he was born (I carried him for 10 months), even though he only weighed about 4 ½ pounds, I thought that because he had all of his fingers, toes, arms, legs, and eyes, all would be well.  I put aside the concerns and fears that had been my constant companions during the time I was pregnant with him, but never really put them away.

Andrew stayed in the hospital for about 3 weeks.  I went home after the 3^rd or 4^th day, never having touched him until the last day, and then only through the small openings in the isolate.  How odd and uncomfortable it felt to be going home and leaving my so very vulnerable baby in the hospital.  I couldn’t nurse him, I couldn’t hold him at feeding times and I almost felt disconnected with him.  The bonding that came so easily with Christopher was absent with Andrew and instead of the happy feelings of new birth, I felt confused and fearful, not so much about his future, but about my relationship with my newborn son.

When Andrew came home I was very nervous.  He was still quite small, and my interactions with him had been so limited that I doubted my ability to care for him.  The doctors had told us to expect some delays in his development because of his small birth weight but those were milestones in his future, not for this moment.  What about tonight?  Can I feed him without a nurse being present?  Will I know what his cries mean?  I stayed awake all that first night, waiting for him to wake up and take a bottle.  I slept with the light on so I could be prepared. 

But he slept the whole night through and didn’t make a peep.  So of course, after the first hour, I had to tiptoe into this room, make sure he was breathing and then go back to bed and get up a few minutes later to check his breathing again.  This is how his first night at home was spent.  Little did I know that the months to come, I would long for a repeat of that first night.

Andrew gained weight, seemed to be doing fine and I kept all of my earlier fears and concerns pushed to the side, thinking of them only in moments of uncertainty.  The first time we faced the uncertainty head was seeing and following as well as he should.  To the doctor we went, only to be told that, while more tests needed to be run, it was doubtful that Andrew could see.  If I said I panicked that would be an understatement.  How could I care for a child who couldn’t see?  What did I know?  I was only 22 years old and had no experience in any sort of disability (at least that was what I believed).

Our family began the journey of coming to an understanding of what this would mean.  Christopher, because of his young age, had no concerns whatsoever about Andrew being blind.  I remember so clearly him bring his little friends over, standing in front of Andrew and waving his hand in front of Andrew’s face. He would turn to his friends and say, “There, I told you he couldn’t see you. Now you try it!” Andrew was the hit of the neighbourhood. Perhaps I should have stopped Christopher from doing this but I didn’t and I am glad I let him adjust to Andrew’s disability in his own way.

When Andrew was about six months old, I was thrilled because it looked to me like he was trying to sit up.  He would be in his little seat, curl up as though he was trying to get upright and then relax.  My Avon lady came to visit one day and when Andrew did this, I proudly told her, “Look, Andrew is trying to sit up already!” She looked at me and said, “Barbara, I’m afraid he isn’t trying to sit up at all. He is having a seizure.”

Well, that was something I didn’t expect to hear.  We went back to the doctor and sure enough, Andrew was having seizures.  By that time it was apparent that something serious was going on with Andrew and we needed to do some more testing.  We were sent to Calgary to meet Dr. Robert Haslam, the doctor who literally changed our perspective and thus the course of our lives.

Andrew spent two weeks in the Foothills Hospital.  The first was spent doing all kinds of tests on him, everything from a spinal tap to a brain scan.  Dr. Haslam had assigned an intern or a resident to go with me to every test to tell me what they were going to do, why they were doing it and what they might find.  Each night, I would call Robert at home and tell him what we did that day.

Every day during that first week, I heard over and over again that I must be prepared for the fact that Andrew would have a mental disability.  I am not sure I shared that with Robert or not, I just know that at the beginning of each test, I would pray for them to find some other answer, some other reason for the things Andrew was going through.

At the end of the first week, Robert came to Calgary and we both met with Dr. Haslam.  He explained to us that Andrew did indeed have a mental disability.  Through CAT scan, it was discovered that about 2/3 of his brain cells were dead, not through a birth injury but that the damage had occurred while I was carrying him.  The picture was pretty bleak – vision impairment, seizures, mental retardation, not at all what we expected.

We asked Dr. Haslam what we should and I will never forget his council to us – it truly set us on the path we have followed since then.  He told us to take Andrew home, love him, care for him and treat him the same way we would treat any of our children.  He didn’t expect Andrew to live beyond 10 years but those 10 years should be with a loving and caring family.  So after another week in the hospital to get his seizures under control, that is what we did.  We took Andrew home and began the rest of our lives.

I write about this first part of our store because it is the part that helped out family to be who we are and where we are today.  Andrew is 30 years old, tripling his original life expectancy.  I know for a fact it is because we kept him with us, in our family and in our home, where he could feel our love for him and desire to be for him what he needed us to be.  It was also in that first year of his life that we became connected with the Lethbridge Association for Community Living, another source of support for our family.

Meeting other parents and families who had already gone through many similar experiences, and seeing that they were doing just fine, was something we needed and still need today.  Being involved with others who are traveling this journey with us has been and will continue to be one of the unexpected gifts Andrew has brought us.  We have been privileged to know and learn from people we have great respect for and whom, if not for Andrew, we would not have met.

Andrews impact on the lives of the others has been and continues to be far reaching and all of us are better for knowing him and witnessing first hand his strength in adversity, his will to live and to love, his laughter and his tears, his enjoyment of life’s simple moments and his ability to draw other to him.  He is treasured gift, one that although our family didn’t expect, in none the less a most precious one.  His brothers and sisters, his nieces, his grandparents and extended family have all played a significant part in his life and have been blessed for it.

My father gave us some advice when we were just beginning our life with Andrew.  He told us that we would have many different experiences with Andrew but if we could come away with something positive from each one, we would be able to grow and learn from those experiences.  I have come to rely on that counsel and have taken it to heart.

As his parents, Robert and I know that we are special, we are not deserving of any praise or honour, we do not want to be put on pedestal, and are not in any way different from the hundreds of other parents in our community.  We simply want good things for Andrew, for him to have a purpose I his life, a rainbow life as I once described it.  We want for him to love and be loved, to be all that he can be and that is the same desire we have for all of our children.  We want him to be respected for who he is and not what others think he should be.  Andrew in his own way will make that happen.