Hi All,

For those of you on multiple lists, sorry for the repeated post. I was just
cleaning out my files and moving from 2000 to 2001 and came across this
speech that my husband gave last year at a legislative breakfast. The idea
was to help legislators understand what families of kids with special needs
deal with on a daily basis. I'm sure many of you can relate!

************************

My name is Rich Bissell and I am the father of six-year-old twin 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 in 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.

*******************

P.S. If you have cared for a child with a tracheostomy, please fill out the
questionnaire at:
http://www.twinenterprises.com/trach/questions/index.htm
Thanks!
Cynthia Bissell
cmbissell@...
www.bissells.com