A Certain Kind of Love, by Deborah Wright and Jean Joy Crowley. Versa Press
This compilation of stories allows us to visit some special families in their own homes and in their hearts. Some of these experiences are a celebration of life and love; others are a tearful reminder of how precious life is and how fragile it can be. But whether tragic or triumphant, each heartfelt story resounds with honesty and emotional integrity. Each story provides the reader with a different perspective and allows us a glimpse into the life of “special needs.”
The death of a child is one of the most horrifying experiences any parent could face. When we read about Jennifer and read her father’s moving and inspiring eulogy we cannot help but be moved.
Cameron’s mother tells us how the love of her son transformed her from a “nervous, naïve, and self- righteous mother to a confident, informed, compassionate, and strong person.” Her honesty and openness are a lesson to each of us. Do you want to know what it is like to be “different” and what an individual who has a disability might feel as he travels through the “able-bodied” world? Read the story of Charles that he has titled simply “My Journey.”
Each of these readings offers encouragement and hope as portrayed in the grief, joy, fear, courage, heartache and unconditional love shown by these families and individuals.
Cynthia Bissell lives in Grafton, MA, with her husband Richard and 6-year-old twin sons Eric and Aaron. The twins both have disabilities related to their premature births.
Legislative Breakfast, 2000
Richard Bissell’s speech to the Massachusetts Legislature at the State House in Boston MA. The goal was to help legislators understand what families deal with on a daily basis.
My name is Rich Bissell and I am the father of twin six-year old boys who have disabilities.
In July of 1993, my wife Cindy gave birth to identical twin sons who were born 3-1/2 months too soon. Both boys had many of the problems common among premature infants. Eric’s most significant problem is spastic quadriplegic cerebral palsy. Aaron’s problems are mostly respiratory, he has bronchopulmonary dysplasia and subglottic stenosis. Aaron’s airway was damaged from the ventilator tube when he was in the Neonatal Intensive Care Unit (NICU). The ventilator certainly saved his life, but no medical procedure is done without the possibility of complications. Aaron had his tracheotomy surgery at one month of age. His condition was complicated by bronchopulmunary dysplasia and he was oxygen dependent for several years. After three months in the Neonatal ICU, the boys finally came home.
When I was thinking about what I was going to say today I looked back at my journal to see what life was like during those first few hectic years. I would like to share with you a small part of that journal. This is pretty much word for word the original journal entry made back in 1994.
February 10th 1994
1:00 AM – The perching alarm has been sounding for about a full minute before I am able to pull myself out of a dreamless sleep. I know it has been ringing because my wife has already managed to make her way to Aaron’s bedside and is in the process of checking his lead wires before I am even out of the bed. It is my turn to do the night shift and I have failed miserably in allowing her to get some much-needed sleep. “Sorry Hon,” is all I can manage as she is already making her way back to bed. The alarm is no longer ringing and Aaron is sleeping comfortably. One of his monitor lead wires had come loose and the apnea monitor was no longer getting a signal telling it that Aaron was breathing.
2:15 AM – I wake up to the incessant alarm of Aaron’s saturation monitor. I wipe the sleep groggily from my eyes and check the time. All of Grafton is in restful sleep and I am envious. It was only a few months ago that we brought our twin boys home from the hospital and neither Cindy nor I have gotten a full-nights sleep since. I quickly suction Aaron turn him on his side and go back to sleep.
3:25 AM – It feels like I have just gotten back to sleep when I hear Aaron’s “Darth Vader” like respirations. Whenever his secretions build up in his airway, his breathing gets noisier and noisier until he is suctioned, making him sound like a miniature replication of the Dark Knight from the popular Star Wars movies. I check his oxygen saturation; it’s 92 and falling. If I do not suction him soon the low saturation alarm will inevitably sound. I turn on the small night light next to his crib and look at this tiny miracle. He has put on a lot of weight over the last few months and is now up to a whopping 8 pounds. The heavy drone of the suction machine is a familiar sound and he does not stir. I clear the tube with normal saline and then suction just deep enough to clear his trach tube. He barely even stirs, having learned from birth that he would have lots of interruptions during the night. His sats crawl back up to 97; his color is good, his heart rate and respirations, normal. All is well.
I take a moment to check on his brother Eric. Eric is sleeping restlessly and looks like he will soon be up. It’s been four hours since we last fed him, or was it Aaron who ate last. They look identical in every way when they sleep. I take a moment to write down the time and saturation level in Aaron’s log and then crawl back into bed.
4:30 AM – Eric is fussing and hungry. I hurry to him, before Aaron is woken by his cries. I quickly make my way to the kitchen and pop a previously prepared bottle into the microwave. As Eric eats, the constant beat of Aaron’s heart rate monitor reassures me that he is fine.
Tomorrow will soon begin the continuing routine of medical equipment, therapies, medical bills, and a constant parade of therapists, nurses, and case managers, as well as the administration of medications, treatments, and feedings that fill our days from dawn till dusk. That, coupled with the many nights of broken and nonexistent sleep, and working full-time jobs, make for cranky coffee filled mornings at the Bissell house.
But for now, Eric’s belly is full and he asleep. The constant hums and beeps of Aaron’s machines lull me back to sleep. My last thoughts are not of medical equipment, sleepless nights, or surgeries. The thoughts that send me to dream land are of two beautiful miracles that are sleeping in those cribs next to our bed. In the morning, when Eric and Aaron are looking up at me, my heart will fill with joy and pride. On the scale of life this joy easily tips the weight of all the sleepless nights and all the worry that I could ever imagine.
Even after six years of sleepless nights I still feel that way.
A few months ago my wife and I received a call from a family living in Springfield who had just brought home their three-month old daughter with a tracheostomy. Since their child has come home, they have had many sleepless nights, medical equipment problems, insurance difficulties, and cranky coffee filled mornings.
I would like to be able to tell them that things are much better than they were six years ago and that there is a lot more support out there. But it is really not so. Many nursing agencies are short staffed and they are forced to either cut back or go out of business. A family who needs 8 – 16 hours a day of skilled nursing are lucky to get any.
For families who need a PCA or personal care attendant the situation is even worse. Nursing agencies are forced to compete with McDonalds for staff that have the responsibility of caring for our children.
Most of us would agree that children belong at home with their parents. A parent of a medically involved or disabled child has the same love for that child as the parent of a typical child does.
In order to live at home many of these children require a certain level of specialized care. It is my hope that we can work toward a goal of allowing all children to have the best possible support in their own homes.
I want to thank all of you for coming out today and hearing our stories.
Content Copyright of Richard C. Bissell
By Cynthia Bissell
Periventricular leukomalacia . . . even in my nursing career, I had never heard of this diagnosis. I only knew it didn’t sound good. When I asked Eric’s neonatologist what this meant, he answered simply, “Cerebral palsy.”
Eric and his identical twin brother, Aaron, were born on July 28, 1993, at 26 weeks gestation. Both had many of the common complications of prematurity. Eric’s most serious complication was and is periventricular leukomalacia, or PVL.
When I first learned of Eric’s condition, I attempted to find out everything there was to know about the subject. I wanted an exact portrait of how this diagnosis would affect my son. I quickly learned a lesson that all families raising a child with a disability learn—there are no clearly defined borders in relation to outcome. We only knew that Eric was at high risk for cerebral palsy.
But what did that mean? Would he walk with a limp? Would he be severely disabled? My spirit grieved for Eric and my mind created negative caricatures of Eric’s future. Not knowing exactly what I was grieving for made it all the worse. Seeing a person in a wheelchair affirmed my worst fears. Seeing a typical child running and playing outside gave me a glimpse of what Eric had lost. As I looked upon this beautiful, tiny baby it seemed impossible that his brain was not perfect. I cried for what Eric had lost at such a young age. I also wept for the loss of Eric as I had imagined he would be. In many ways, the unknown was the hardest part of Eric’s diagnosis of PVL.
Children come into this world innocent, carefree, and full of life. At least that is how it’s supposed to be. What possibly could have gone so wrong that my child would never have the same advantages as typical children? Questions such as this constantly went through my mind. I struggled with feelings of guilt, sadness, anger, and jealousy. Guilt for maybe having done something that caused the twins to be born too soon. Sadness at the loss of the usual joys of pregnancy, childbirth, and twins. Anger because this happened to our family and jealousy toward people with “normal” children.
Now that Eric has actually been diagnosed with cerebral palsy, I am slowly gaining insights into his full potential. At least I can begin to cope. I try not to mourn what was lost, but accept and acknowledge what has been found. I realize that although things could have turned out better, they could also be much worse.
I am thankful for Eric and his brother. Eric has an infectious smile and a belly laugh that is contagious. He has brought tremendous joy into our lives and into the lives around him. He has taught me patience and to take nothing for granted. He has taught me what is truly important in life. When I first learned of his diagnosis, all I could think about was his disability. Now I see that he is “Eric,” a child similar in most ways to any other child. His disability is only a small part of who he is.
CINDY, MOTHER OF 26-WEEKER ERIC, TWIN TO AARON
by Richard and Cynthia Bissell
We will never forget the day we went into the hospital and found Aaron in respiratory distress. His little eyes were open wide with fear. As he gasped for breath he seemed to plead with us for help. We felt so helpless as we watched him struggle to breathe. We could hear a tiny squeak coming from him with every breath he took. He was immediately intubated.
It was difficult to remain calm as we listened to the rhythmic sounds of the ventilator breathing for Aaron at the same time the neonatologist talked. Aaron had subglottic stenosis (a narrowing of his airway). The doctor recommended a tracheostomy. The implications of this were enormous. We could not believe they were going to cut our baby’s throat. He was so tiny—only four pounds—and so fragile. We felt like we had been punched in the stomach.
Making a decision like this would be difficult under normal circumstances, but we were making it after weeks of little sleep and constant worry. We were forced to depend on the competence and integrity of the medical team. We were putting the life of our tiny precious son in the hands of strangers.
The most difficult part was kissing Aaron good-bye before sending him into the operating room. Part of us wanted to stop the whole thing and just hold him and tell him everything would be all right. Our more rational side handed him to the surgeon and watched tearfully as he was escorted down the hall.
Seeing Aaron for the first time after his surgery brought both relief and trepidation. He looked so much more comfortable: He was not struggling to breathe and he was peaceful. Yet, he had this foreign tube sticking from his throat and many tubes attached to his small body. We wondered, What would be the final outcome? Would he be able to talk? What would our lives be like as we cared for this child? Many of these questions could not be readily answered.
The day before Aaron came home from the hospital, the medical supply company delivered all the equipment we would need to care for him at home. Before we knew it, our living room was full of medical stuff—a suction machine, monitors, oxygen tanks, tubes, and wires. It was all a bit overwhelming.
Once Aaron was home, one of the scariest jobs was our first trach tube change without the backup of the hospital personnel. We were also afraid that his trach tube would become blocked or that a curious child (even Aaron himself) would pull out the tube.
Over time, trach care has become so routine that we often don’t think twice about it. To Aaron, the tracheostomy is just another part of him, like his eyes, ears, nose, and belly button. We try to treat Aaron as a typical kid, but with a few added precautions.
RICHARD AND CYNTHIA, MOTHER OF 26-WEEKER ERIC, TWIN TO ERIC