Reconstructing Our Dreams: The Journey of Grief For Parents and Families Who Have Children With Special and Unique Needs


I have been following the updates of a few young couples that I know who are eagerly anticipating the arrival of their babies into this world.  It has been enjoyable to watch their excitement and enthusiasm as they prepare for this new chapter of life.   I will never forget that sense of anticipation that we experienced as a couple when we were preparing for the birth of our sons.   I particularly enjoyed watching and feeling both of our boys move in the womb during the course of the developmental cycle.   One of the most awe inspiring moments was the moment that they were born.  I struggle to find words to describe the birthing experience.   In the midst of all of the emotion that I experienced, I distinctly remember a flood of tears that rolled down my face with each tear representing all of the hopes, the dreams and the anticipation of what life would look like for us and for our sons

Dreams are a healthy part of the human experience, they have the power to keep the human spirit thriving.  They provide us with hope in times of challenge and struggle.  They are the foundation of inspiration.  They drive us to achieve and experience more than what we could have ever imagine.   At times our dreams are the only thing that keep us alive.   And yet, the very same dreams that have the power to take us to new heights can also be the same dreams that are shattered.  And such is the case in having a child who has special and unique needs.

Little did I know that many of those dreams that had been formulating in my mind the day that our son was brought into this world would be dramatically altered.  The likelihood of seeing my son walk down the aisle, of going on to get a college degree, of having his own children, of earning a living to support him and his future family would never come to pass.

So are the dreams that have been shattered the end of life as we know it?   I suppose it depends on how we look at it.  At one point in time, I believed that it was.   I just couldn’t see the hope of life holding the possibility of anything good.

But then……..

The lens that I viewed life through began to change.  I can’t explain how it came to be, but it just did.  I suppose it had something to do with time and a culmination of our experiences.  As much as I can’t clearly describe what happened, one thing is true, I began to look deep into the eyes of my child and started to see him as my son.  Yeah, he had always been my son in a genetic way, but I REALLY started to see him as my SON.  I saw beauty, I saw laughter, I saw happiness and joy.  I saw a world of love that I had never seen before.   I saw a child with dreams, dreams of who he wanted to be.  It was time for me to get on board with his plan for his life.

Through the work that Lisa and I do through Celebrate Hope we consistently communicate that if we are ever going to experience a place of hope in our journey with our children we MUST reconstruct our dreams.  This is to suggest that we work to gather up all the pieces of what was once shattered and then develop a new vision for the life of our child, our life as an individual and for the life of our family.   There is potential when we bring all of those shattered pieces together, there are new dreams that are formed and what comes out of the ashes is a thing of beauty.

Yes, life will look different than we hoped, but in so many ways it can become even more beautiful that what we could ever have imagined.  Lisa and I being parents of children with special and unique needs continue to reshape and reconstruct our dreams for ourselves, our children and our families.   We dream of looking into the eyes of our boys and seeing their joy and fascination for life.   We long to see boys that are happy and fulfilled in whatever they do as they pursue their own hopes and dreams and passions for life.  We are constantly being challenged to look past their individual challenges and their quirks as we gaze into the heart that they possess for life.  Yup, those dreams may not be the ones that we possessed as we held our children in our arms when they were infants.  It doesn’t mean that are new dreams are inferior in any fashion, it just means that they are different.

In 2010, 8 years after the birth of our youngest son and 6 years after he was diagnosed with autism and 2 years from the day that I had been sitting on the hearth of our fireplace when I felt as if life was filled with nothing but hopelessness and disappointment, I noticed that my perspective began to change.  I grew tired of living with feelings of despair.  I began to dream, dreaming of the limitless possibilities of what might become of our son’s life.   We had walked through so much and survived!   Commemorating this new chapter in our journey I got a tattoo that covers the upper portion of my right arm that took on the form of a phoenix.

The legendary phoenix is a large, grand bird, much like an eagle or peacock. It is brilliantly colored in reds, purples, and yellows, as it is associated with the rising sun and fire. Its eyes are blue and shine like sapphires. It builds its own funeral pyre or nest and ignites it with a single clap of its wings. After death, it rises gloriously from the ashes and flies away.  The phoenix symbolizes renewal and resurrection as it rises from the pile of ashes, and then a new Phoenix arises, young and powerful.

Lisa and I hope that in the ashes of what life came to be for you, for your child and for your family you might discover new hopes, new dreams and ultimately a new life which is filled with countless possibilities.   Yes, maybe different but definitely not less!

Next week, Lisa and I will continue our series as we talk about “Acceptance and Hope”.   We would be honored to walk with you if you are a parent of a child who has special and unique needs. In addition to working with families, we help provide systems of support in educational environments and in the workplace for not only parents but also educators and employers.  Be sure to check out our website at  http://www.celebratehopellc.com. You may also reach us (248) 330-8493.

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