Tag Archive | special needs child

A Miracle in My Living Room

A Miracle in Our Living Room

A miracle is defined in the Miriam-Webster dictionary as being an “extraordinary event manifesting divine intervention in human affairs”.  This definition resonates with me as I look on the last half decade of my life.

It was not a miracle that I met my husband, though I prayed for a wonderful man to come into my life. Our meeting was brought together by a website called Christian Café.com. My husband proposed to me two and a half years to the day from our first meeting. Six weeks later we were married in our church before friends and family. It was a glorious day.

Six months later we were delighted by the news that we were expecting. We bought little booties and gave them to both sets of parents as a way of announcing our bundle of joy. We lived in expectation of the birth of our first child.

The day of our first sonogram had arrived. We were excited to learn if the baby was a “he” or a “she”.  We received wonderful news revealing our child to be a “he”. However, the doctor also shared an area of concern. Our son’s arms and legs were substantially shorter than that of a pregnant woman in her 20th week of gestation.  I wanted to rejoice in the news of our child’s gender but instead I was grappling with this concerning news. At first, I thought, the doctor is wrong. Our child would “catch up” and grow to be within normal range.

We sought another opinion and to our surprise the news was dire.  We were told our son’s diagnosis was potentially “not compatible with life”. Further testing was recommended to include an amniocentesis.  Despite facing such a negative prognosis, we both felt a “peace that passes all understanding”.  That peace carried us through to the day of our son’s birth in August of 2005.

We did not hear a loud cry from our son as he made his entrance into the world. He was whisked away to the Neo-Natal Intensive Care Unit where he was intubated and placed on a highly specialized ventilator. We were told he would not survive birth. The first miracle; he lived.  Indeed, the patient kept living. In those first six weeks of his young life, our son, Samuel, had a tracheostomy and a gastrointestinal tube placed. We were told to count our son’s days in terms of months, not years. Each month of life was celebrated like a birthday. He was transferred to the Pediatric Intensive Care Unit where he celebrated his first Christmas surrounded by family, friends, doctors and nurses.  He was a miracle at four and a half months old.

As the New Year approached we were encouraged by Samuel’s lungs getting stronger. Through a series of ventilator trials he was slowly being weaned off the hospital grade ventilator to a ventilator made for home use. It was an arduous process. Two steps forward, one step back. Then it happened, he was breathing on the home ventilator.  By February, he was being transported by an ambulance to our home and 24 hour nursing care. August arrived and we celebrated the day we were told not to expect, Samuel’s first birthday.  We asked guests to bring balloons to this momentous event.  And so they did.  The house was full of bright and beautiful balloons of all shapes and colors. The house was also full of hope.

Today our son is eight years old. He is full of exuberance and joy with a hint of mischief. We believe God divinely intervened in our son’s life. Just in the last year, we were amazed to have Samuel weaned off the ventilator.

I’m blessed to have a real life miracle in my living room.

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Hope Lives Here

To Families Facing A Diagnosis of Thanatophoric Dwarfism:

My heart’s desire is to come along side families who are given no hope. My son was not expected to live past birth; however, he lived. Six months in the hospital and five and a half years later he still lives.

It breaks my heart to see other families going through this…are they given all the options? Are they told ALL these children die…no exceptions? Are they told the diagnosis these children have is not compatible with life. Are they given no hope? I certainly was when I was pregnant with our son. I heard of a few survivors but none living past seven years of age.

Was I told that there is a child with TD that is now 25 years old! No. Was I told about another child with TD who lived to be 20 years old? No. This is what I was told:

“Do you want to take your child home?” the doctor asked.

“Yes”, we answered.

“O.K., he will need tracheostomy surgery and a g-tube put in his stomach. Then you can take him home.” the doctor replied.

We said, “O.K., let’s do it!”

We knew that they had no hope for our son. We knew they thought he was going to die.

Are parents facing the same situation (a diagnosis of TD) told about our son? There are two other families I am in contact with whose children are survivors of TD. These children can survive but how will the parents know unless someone tells them. We are willing to share our son’s story so that they will know.

You can go to Samuel’s website at www.caringbridge.org/visit/samuelmann to read my journal these last several years but what is most inspiring is to see our son’s smile in the pictures posted there.

With hope,

Evelyn Mann (Samuel’s Mommy)

God’s Alternate Construction

“Did you see my son hit that baseball out of the park!” the excited father yelled to everyone in the stands. Everyone stood at the same time watching the boy run from base to base and then slide to home plate.

“Safe”, the umpire declared.

Everyone erupted into a wave of cheering and triumph as the play won the game for the team.

The father was understandably proud of his son. We parents cheer whenever we see our children triumph. Some parents though are experiencing a different journey where victories for their children are not so clearly seen. There is a whole world of special needs parents raising their children and also cheering each victory. In our family we are living the words, “I can do all things through Christ who strengthens me.” The victories we experience are quite different from an able bodied child. Though different, each victory is celebrated as if the child hit a home run.

Ask any therapist of special needs children and they will tell you that the smallest victory is cause to celebrate. Therapists are schooled to be patient as they wait for these wee ones to display even the most inconsequential accomplishment. For one child it may be eating their first bite of solid food. For another it may be grasping a toy for the first time. Able bodied children also experience these first’s but for many special needs children these victories are years in the making.

Each journey for a special needs family is different.  Some disabilities are mild while others are profoundly debilitating.  What is the same of all these children is that most parents are fiercely proud of their children no matter what the diagnosis.  My husband calls our son’s diagnosis an example of God’s alternate construction. He looks different but he is still fully made by God.

What would special needs parents want other parents to know about their children? That we face struggles, although not the same, as other parents. What is the biggest compliment you can give a special needs parent? Pay attention to their special needs child. Talk lovingly to the child even though they may not be able to respond. How can you support special needs parents? If you are curious, ask about the child’s diagnosis instead of wondering and never knowing. Ask the parent what their biggest blessing is in raising a special needs child. Ask what their biggest need is and how you can help.  It may be to pray for an upcoming doctor’s visit.  Listening can be the best gift you can offer. Many parents have no support group with which to share their joys and struggles. Simply knowing that you care can mean so much to a special needs family.  In our church, we have some very special people who thoughtfully buy our son diapers every year. The next time you see a child who is a little different be bold and reach out to the parent.  You will be glad you did.