Tag Archive | special needs parent

Reality Check

Back Camera

The soothing aroma of cinnamon rises from my glass tea cup as I look outside. It’s mid-morning on a sunny Florida day. A few wispy clouds linger on the bright blue horizon as a soft breeze touches the tree limbs in a sweet caress.  The coffee shop offers a cold taupe granite countertop which holds my laptop.

As I string words together for my memoir, I enjoy soft piano music playing in my ear. Over the soft melody, I hear a baby babbling in a stroller behind me. I smile. I attempt to focus on the computer screen. The baby continues to coo. Then I realize, Samuel makes these same sounds.

I turn around see two ladies sitting at the table with a stroller to the side. A woman with blonde hair holds the baby in her arms.

“How old is your baby?”

The other woman answers, “She’s eighteen months.”

“She making sounds like my son.”

“Oh, how old is your son?”

I hesitate to answer. In the many times I have been asked this question, I face the same dilemma. My son doesn’t look like his age. In this case, how do I explain an eight year old who is still in the cooing stage. Sometimes, I’m tempted to say he is 8. Perhaps they’ll think he’s 8 months, not 8 years old.

“My son is eight years old. He has a rare form of dwarfism called Thanatophoric Dysplasia.”

The woman holding the baby chimes in. “Oh, how interesting.”

I smile. “He’s eighteen pounds and twenty-four inches long.”

The mother looks at her daughter. “That’s how much Brianna weighs.”

I look at her daughter who’s legs and arms are much longer than Samuel. Mental note: my son is smaller than an eighteen month old. I don’t dwell on Samuel’s size in comparison to other children but it’s in moments like these I can’t escape the fact.

We chat for a few more moments and then say our goodbye’s. The café is quiet now with only a few people left enjoying a solitary cup of brew. I pack my laptop, sling my purse strap over my shoulder and walk to my car. It’s not until later when I reflect on the encounter noting my journey is a unique one. Though different, I understand my son is just another version of normal. What my husband calls “God’s Alternate Construction.”

 

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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.

Answered Prayers

“To what do you attribute your son’s survival?”
“The only way I can explain it is God.” I answered.
Any parent facing a similar situation would do anything for their child to survive. If there was a button I could have pressed that would make everything better, I would have pressed it. Doctors could not heal our son. There was no drug to cure his diagnosis. A ventilator was used to help him breath but there was no quick fix to wean him off the machine.
One day his oxygen level dropped fourteen times. We were being told his lungs just weren’t able to keep up. The situation seemed dire. I excused myself from the Neo-Natal Intensive Care unit and went into the hallway. I made one call to activate the prayer chain at church. Shortly after my call, a new respiratory therapist came to Samuel’s crib. She suctioned him. Nothing. She tried again when “something” broke loose. There was a mucus plug blocking the tube in Samuel’s throat which helped him to breathe. Soon after, his oxygen level rose to an acceptable level. The crisis was over. I thanked God.
I pray over Samuel every morning and every night to this day. It doesn’t mean each day is going to go perfectly but I am comforted in knowing that God hears our prayers. A dear friend gave me a verse when Samuel was in the hospital. “He gently leads those who have young.” Isaiah 40:11. I treasure that passage.
Two years ago, Samuel passed out when he was receiving therapy. An ambulance was called while my husband and I worked to clear his airway. I quickly prayed, “Dear Lord, help us”. I was holding my breath while I was waiting to see my son breathe. On our second attempt, Samuel started to cry. At least he was breathing, Praise God. The ambulance transported us to the hospital. The doctor determined that Samuel wasn’t breathing correctly. She decided to put Albuterol directly down his tracheostomy tube. It was a risk, but it worked. Thankfully, we were able to take our son home that night. He had no ill effects from the episode.
I love our son dearly. I know his times are in God’s hands. I cherish every moment. With each smile, my world stands still and explodes with joy. And so, I continue to pray.

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.