Stories From the Heart: Two Special Babies

The day I had waited nine months for finally arrived. My beautiful, perfect baby boy was here. Three years later my beautiful daughter arrived. Like every new parent, I had concerns. They were quickly put to rest by our pediatrician. By the time Emily was born, I was more relaxed. Many of my friends were jealous. I had gotten perfect children. My children slept while my friends’ children stayed awake.

I wasn’t experiencing the “terrible twos” and “horrible threes” my friends were experiencing. I gleamed with pride at the two gifts I had been given. The seemingly perfect reality I was experiencing was simply a facade of which even I wasn’t aware.

My son, Jacob had been receiving early intervention services at our home because of what we believed was a simple speech delay due to many ear infections. When he turned three, we were given the opportunity to send him to a full day speech and language school. Within months, Jacob was beginning to talk.

At the same time, our Emily was growing more beautiful with each passing day. She had a glowing personality. People everywhere were drawn to her smile and she warmed the hearts of all who met her. She wasn’t however, meeting some necessary milestones as quickly as other children her age. The pediatrician reassured us that Emily was merely “low tone” and that she would catch up eventually.

Months passed and Emily became more frustrated. When she was eleven months old I called early intervention services. She was evaluated and it was determined that physical and occupational therapies were required. Therapists were assigned and Emily quickly began meeting milestones. We cheered her on as the frustration lessened.

Our perfect world had been restored. Once again, however, perfection would be shattered by reality. We began to notice certain behaviors in our son had persisted despite his new found ability to communicate his needs. My husband and I realized that this needed further investigation.

Jacob would be entering kindergarten and we would have decisions to make. I took Jacob to a neurologist expecting him to laugh and say, “He’s a kid. This is what they do.” I sat in the office on that April afternoon, my stomach churning. I finally met the doctor, who instead of confirming my hopes, said, “Jacob is Autistic,” I was speechless. Questions loomed.

Autism was one of my worst fears. To me, Autism meant a child who could not connect with others, a child who did not want to be touched, and a child who would spend his adult life in a group home or institutionalized. Through tears, I tried to listen to the prognosis.

“Jacob could not be Autistic”, I thought. He loved to be held and hugged. Jacob was too smart for that-he already recognized all the letters of the alphabet! I didn’t understand. There were behaviors, the doctor said, which clearly pointed to Autism: the repetitive movements, the echolalia, the inability to make eye contact. Yes, this child was Autistic and would need a lot of work if he was to have any semblance of normalcy.

After Jacob’s diagnosis, I began to worry about Emily. I worried that some day we would get bad news about her too. She continued to improve and unlike her brother, she was very social. Fear subsided and we breathed a sigh of relief that life was once again returning to normal.

When Emily began to talk, however, we noticed that her speech patterns sounded muddled and she was difficult to understand. Once again, the wheels of fear turned in my head. Why was she having so much trouble? I felt an urging to find out, but chose to push the fear and doubts to the back of my mind.

I had been speaking with a family friend whose daughter has Down Syndrome. We discussed Emily’s therapies and she urged me to rule out bigger problems and not just treat the symptoms. I had felt this way too, but it’s unnerving to have someone else say it and not know your thoughts. Emily needed to see a specialist. We went back to the neurologist.

After looking at Emily, he said he felt it wasn’t anything terrible, just something that a simple blood test would reveal and could be “cured.” Much relieved, I took Emily home, thankful we had been spared. It took three weeks for the blood tests to come back. I went back to the neurologist’s office confident that all was well, while my son went to school and my husband went to work. I promised to call as soon as I was finished.

Finally it was our turn to see the doctor. He looked over Emily’s charts and said, “Ok, today we are here to discuss how to handle Emily’s Down Syndrome.”

“Emily has Down Syndrome?!” I asked in horror and disbelief.

Confused, the doctor looked back at the charts and quickly realized he hadn’t given me the bad news before because I’d had to cancel the previous appointment. Apologizing, he retraced his steps and explained to me that Emily had a rare form of Down Syndrome. This is why it had not been detected in my prenatal tests. Here I was, sitting in the neurologist’s office listening as he told me I didn’t have a normal child…..for the second time!

Hysterical and shaking, I left the neurologist’s office and called my husband. Now it seemed hopeless. Both of our “perfect” children would face insurmountable challenges that we could not take away. Over the next few days I cried. I begged God to inflict this upon me and spare my children. I begged Him to help me to understand why this tragedy had befallen our family.

Then, from out of deep depression and confusion came a soft voice in my heart urging me to do something. I realized that sulking and feeling depressed wasn’t going to help Jacob and Emily. I got to work. Using my knowledge as a teacher, I made endless phone calls to anyone I could think of.

Appointments with schools were made. Additional evaluations were scheduled. It took less than three weeks to place Emily in a half day preschool program. A process that should have taken months took a few weeks. Everyone wondered, how did we get it done so quickly? I had been through it before.

Emily’s diagnosis did more than help her. It helped my husband and me. We had been financially struggling and had been wondering all summer how we were going to pay the costly daycare Emily was enrolled in. With the diagnosis, Emily became eligible to attend a preschool program five mornings a week free of charge and a family friend became available to watch her in the afternoon.

The blessings have been endless. We are watching them learn and grow at their own pace. We realize that it won’t be easy, but we are prepared. We were especially excited to discover that Jacob’s prognosis has improved and with the right help he should be able to grow up and be like everyone else.

Happiness shines through Emily and it is impossible to feel anything but joy in her presence. Her ability to light up the world outshines her disability and all who meet her are amazed by her warmth and compassion.

Truly, a lesson has been learned. God gives us not what we think is best, but what He believes we need. He knew I needed them to teach me about love and acceptance. He knew that I had strength I thought was impossible. He knew that I was exactly the mother these two special babies needed. I am honored to know that I have been chosen to do His work.

By Susan Friedenburg

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

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