67: Seizing Opportunities

67: Seizing Opportunities

From Chicken Soup for the Soul: Family Caregivers

Seizing Opportunities

Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow, it will split in two, and I know it was not the last blow that did it, but all that had gone before.

~Jacob A. Riis

“Please don’t take him from me. I just want to hold him a little longer. I don’t care if his heart has stopped beating.” These were the words I cried to the doctor as my less-than-one-day-old son lay wrapped in a blanket in my arms in a small waiting room off the neonatal intensive care unit. This was my first baby, and our family and many of our friends had gathered in the waiting room where they had just been informed our baby had died.

Spencer was born on December 29, 1999, and I knew the moment he was born something was wrong. We did not experience the birth of our baby as we imagined it would be, where my husband was allowed to cut the umbilical cord and the baby was placed upon my chest to hold. Our baby was not crying, and his Apgar scores were zero.

Doctors and nurses flew to the rescue to work with him, taking him immediately to the neonatal intensive care unit. He had suffered a stroke and asphyxia (lack of oxygen) during the birthing process. We were informed he had lung, heart, and brain damage. A little less than 24 hours later, he had a seizure for which he was medicated, and he went into respiratory arrest. The medical team exhausted every rescue measure available to them, and finally called my husband and me in to have an opportunity to hold him for the first and last time.

His heart rate was 18 beats per minute. My husband and I huddled together over this precious little boy, hoping for a miracle but praying for God’s will to be done. The doctor kept checking his heart rate in order to call an official time of death. The third time he checked, I knew something was different. Convinced my son had died, I begged the doctor not to take him from me. However, the doctor informed us he was not dead; he was alive. His heart rate was back over 100 beats per minute—a miracle.

He returned to the NICU where he continued to improve. For two weeks, we had every test imaginable run on him. Finally, we were released from the hospital, but were told the damage to his brain was in the area of speech and motor skills, and he would probably never walk or talk.

Every new mom comes home from the hospital with her baby knowing she will be the primary caregiver for her little bundle of joy. For some moms, though, especially those of special-needs children, the job is a bit bigger and more demanding. Such was the case with my son, Spencer. At a few months of age, we began therapy. We did speech, occupational and physical therapy several times a week. I was working a full-time job at a major university, but I had to quit to care for my son and make sure he received the therapy he needed. He eventually sat on his own, crawled and learned to walk, although it was later than most. He learned to sign more than 200 words. Then one day we experienced another miracle when he began talking. By age three, he was completely caught up to where he was supposed to be in both speech and motor skills.

Then, on a cool day in March 2003, he had a seizure. We weren’t sure what was happening at first. We went to the hospital where he was medicated to stop the seizure. Afterward, he could not move his right arm, and the right side of his face was drawn, causing his speech to be slurred. We thought he had experienced another stroke. After a few days in the hospital, he returned to normal and came home. A few months later, he had another seizure. It was then he was diagnosed with epilepsy.

Over the past eight years, we have lived a life of uncertainty, not knowing when a seizure might happen or how severe it might be. Spencer has been on more than 10 different medications and currently takes 19 pills per day to attempt to control his seizures. He has been evaluated for epilepsy brain surgery, but it was determined he was not a candidate. His seizures and the side effects of his medications have caused him to regress in his speech and motor skills. He has been in occupational, physical and speech therapy off and on for most of his life.

In order to advocate for my son, I have had to educate myself about epilepsy, medications, and treatment options. I have changed doctors, even traveling halfway across the country looking for the best one. I have met with teachers and school administrators to make sure he receives adequate accommodations. I have fought tirelessly to educate others and try to end the stigma surrounding epilepsy. I have even gone to our nation’s capital to lobby for changes in health care. Has it been a battle? Yes. Has it been worth it? Absolutely. In doing these things, I’ve changed my son’s life and hopefully helped change the lives of other people who suffer with epilepsy. And I have taught my child a valuable lesson: to advocate for himself and others.

He understands that seizing is not just what happens to him, but something he can do. He can seize every opportunity to make a difference in the lives of others through his experiences. He is active in a group of advocates for epilepsy to educate others and bring awareness. He has traveled the country with me, visiting more than 20 states to present educational programs. He has participated in the National Walk for Epilepsy in Washington, D.C., for three years and has put together teams for local awareness walks in the state of Georgia. He has been to Capitol Hill with me. Because I didn’t give up, he won’t either.

There are times when I am weary and worn down from being the caregiver of a child with an invisible chronic illness. During those times, something always seems to happen to give me one more day’s strength and the will to push forward. A few years ago, I was at a breaking point. Spencer had been in and out of the hospital for 17 straight months. One day, the phone rang, and I received the most wonderful news. We had been selected to receive a seizure response service dog from an organization called Canine Assistants. Lucia, our dog, is a constant companion for Spencer. She is trained to alert us if he has a seizure and has even developed the ability to detect some of his seizures in advance. It’s like having an extra set of eyes and hands—or in this case, paws—to take care of Spencer. She has given him confidence and a sense of security, and has given me assistance and assurance.

A few things I’ve learned as a caregiver through our experience is to seize opportunities to help others, to never give up, and to take help where you can get it, even if it comes from a dog.

~Amy Wyatt

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