From a boy's short life, lasting lessons for family

LAST JULY, my 4-month-old nephew, Markie, died of a severe neurological disorder. To this day, the cause of his condition is unknown. Although time does help the healing process, our family continues to miss Markie so much and struggles to understand why this had to happen to such a sweet, innocent baby.

For me, it is my sister-in-law, Janis, to whom I look for strength and meaning. I think Janis sensed early on that Markie was sent to teach us some of the most important lessons -- that life is precious and that it is the simple joys found in those around us that make existence worthwhile.

Markie was born on Feb. 21, 1999, and appeared to be a healthy baby. Janis, my brother Joe and their 2-year-old daughter, Maddie, were so excited to bring him home. But during his first month, Janis felt that something was not quite right. Markie rarely cried, slept often, and twitched so quickly at times that his bottle would fly out of his mouth. His pediatrician recommended that an EEG be conducted to test Markie's brain activity.

Changed lives

In the middle of the test, the technician rushed out of the room to find a neurologist. Janis said that at that moment, she knew something was terribly wrong and that their lives would never be the same. And she was right.

The neurologist, a very compassionate doctor, told Janis that Markie's brain activity was severely abnormal. The EEG showed that he was having constant seizure activity. He was immediately admitted to the hospital, where he spent the next nine weeks undergoing tests and treatment.

Nothing seemed to be helping, and Markie's condition began to deteriorate. In addition to the seizures, he would stop breathing at times for no apparent reason and eventually needed to be placed on a feeding tube.

Eventually, it was apparent that Markie was probably going to die soon. Although many people kept hoping for a miracle, I think Janis knew the truth. And more than anything, Janis and Joe did not want their son to be in a hospital when the moment came.

With the help of a wonderful hospice care nurse, they brought Markie home, where he could spend his last days with his big sister and the rest of his family. He needed lots of medical attention, and Janis and Joe learned how to care for him.

Janis spent many nights on the couch holding Markie; sometimes this was the only way he would go to sleep.

Because their son required constant attention, Janis and Joe were homebound for the most part. Fortunately, they had a huge network of family and friends to help them get through. During Markie's entire illness, meals were provided every night by Joe's co-workers and by their neighbors. Many times, Janis and Joe wondered how they would ever repay everyone for their generosity. They knew how blessed they were.

Janis will always say that everything she had to do for Markie was just what any mom would do. As true as that may be, her love for him will always touch me. Janis read and sang to him every day. She knew just how to comfort him by touching his head or holding his hand. And somehow, she had a smile on her face most of the time.

Markie died at home on July 2, 1999. He was 4 months old. To this day, I don't know where Janis got her strength to make it through this tragedy. She loved Markie so purely, and cared for him even as she knew she would have to let him go. She showed me what unconditional love really means.

Janis knew Markie was never going to be like other babies. He would never crawl or talk or laugh. Yet, there were so many things about him that made her so proud to be his mom. He gave us all the opportunity to share a love with him and each other that we would have never otherwise been able to. As Janis says, Markie gave everyone a chance to show the ``good stuff'' that they are made of.

Special blessings

Recently, some of our family went to the cemetery to visit Markie. This was the first time many had been there since his burial. Everyone was very somber afterward. As our family said the blessing before dinner, Janis again reminded us of the special ways that Markie touched our lives in the short time he was here.

She reminded us how lucky we were to have each other. Every day, I think about that and realize how right she is. And I know that there are other simple joys in life -- a smile, a hug, hearing the laughter of a child -- that mean more to me than anything ever has. For this, I am grateful that Markie was in our lives to show us how precious it is. And I am forever grateful for his mom for never letting us forget this.