Along The Road by Sharon Gilbert
The following was a presentation at the 2007 SWS (Sturge-Weber Syndrome) Foundation International Conference...
When Carol asked me to speak at this session she suggested the title: “Along
The Road.” She said “Talk about your experiences with the Foundation, your
strengths and resources. Basically, describe the journey of SWS”.
Just a few little things like that eh? I think I was asked because I have
white hair -
Actually it does mean that our family’s journey will give you a historical
view of how things were and how they’ve improved over the years. I would so
like to motivate, inspire, create hope, share laughter, and have you feel
empowered as you leave here.
The best way to do that is to just be, to be with you, to share stories. I
believe that in sharing, we realize our kinship, and find common experiences
in our journeys that connect us and help us feel less lonely.
Before I start these stories, I’d like you to know that each person in my
family has been behind this effort. They’ve searched their hearts, answered
my questions about their thoughts, feelings and experiences, and have had
the Grace to risk this kind of honesty and exposure.
And why would they and I do this? Well, maybe it’s one of the gifts of
living with Sturge-Weber. I think we really are more open and courageous
because we’ve learned we need to
be.
Forty-two years ago, when my husband Noel was 30 and I was 23, our first
child, Jeff, was born. It was a difficult birth, breech, and he was taken
immediately to the nursery.
Later, a nurse brought him to me to hold for the first time. There was a big
black X marked across each cheek. Shocked, I asked what those X’s were for.
The nurse answered, “There’s something wrong with your baby and they’re
trying to figure it out.” There’s no good way to find out your baby has
problems.
Two-and a half weeks later, a specialist was able to tell us he thought Jeff
had a syndrome called Sturge-Weber. He told us the little bit he knew about
the syndrome, gave us a referral to the Well Baby Clinic at UCLA, and
suggested we might consider institutionalization.
Our Baby!? We didn’t even know yet who he was. I think that moment is when
my internal “mother bear” came into being. On the exterior I remained fairly
calm and quiet. But inside, I was fiercely determined that our baby would
have every opportunity possible to develop and
thrive. When Jeff was a month old, Noel’s Pop said, “This baby isn’t
seeing.” We couldn’t believe it. “He’s only a month old; how can you tell?
He was our first child, remember.
Soon we were in a different clinic at UCLA: Ophthalmology. Jeff already had
pressure in the 60’s in both eyes. That was the beginning of ongoing clinic
visits and hospitalizations for sight
saving. A battle lost by increments.
In his first five years Jeff was hospitalized 39 times and had clinic visits
often; sometimes two or three a week. I can say that now and wonder how we
ever managed. At first no one knew what visual acuity Jeff had. As he grew
old enough to answer questions, we found out he couldn’t see how many
fingers a doctor held up and was considered to have no measurable vision.
But he loved colors and had some sense of shapes. He even learned how the
letters of the alphabet look. I asked at the meat counter for a roll of
butcher paper and made block letters on it about a foot high. I placed them
on the rug in the living room and Jeff and I would crawl around playing
games with them.
I asked Jeff last week if it was worth what he went through to keep what
vision he could. His answer: “absolutely - it was worth all of it to keep my
sight as long as I did.” And so these many years later I felt a burden
lifted. It had hurt so much to decide again and again to have procedures,
not knowing if they’d work, if he’d die with complications from anesthesia,
and if all the trauma on his little system would slow his development or
leave emotional scars. I’m so grateful, Jeff, for who you are.
I learned a lot at UCLA. I learned persistence and finally found a doctor
who was willing to let me read what was available at the medical library
concerning SWS.
I learned how rare SWS was, and how little was known about it - a column and
a half in a thick medical text. Do you know that when you do an internet
search now for SWS information, up comes a notation that says, “about 183000
references”? Thank heaven for our Foundation and for the Internet!
I learned patience at UCLA as we sat day after day, hour after hour, AND as
a constant stream of MDs, residents and interns came to observe, and ask
repeated questions. I was glad they were learning about this rare syndrome.
And when I was exhausted I learned boundaries and assertiveness so that I
was able to say, “I’ve answered these same questions and given a case
history to seven other interns today. Jeff and I are too tired to do it
again; you’ll need to borrow some one else’s notes.”
I learned that love helped me do things I couldn’t imagine doing. Like hold
my baby still while doctors did things I didn’t want to witness. You know
when I grew up, if you were female you pretty much knew that your choices
were to be a teacher, secretary or nurse. I chose NOT to be
a nurse, and yet now I nursed day after day, after day. I learned to be my
son’s case manager
and advocate. To enlist doctors to the concept that we parents were part of
the team and needed information, and a voice. That was not taught in medical
schools back then like it is now.
There were doctors who expressed their humanity and caring. And these you
learned to trust and count on. I also learned how necessary it was to my
survival to trust in a spiritual being; to lean into the arms of something
bigger than any of us. I knew we’d never fully understand; never be certain
of outcomes; ache with sorrow. But I knew I could never make it though this
life without being able to release my expectations and trust that life was
worth living.
Reminds me of a fun story. The neighbors were putting on a new roof and
there’d been ripping and hammering for a couple of days. Noel went over to
talk with Gary our neighbor and three-year old Jeff went along. Gary and
Noel were discussing the job when Jeff shouted, “Daddy, Now I know what
they’re doin’ up here.”
Noel, startled, looked up and saw Jeff standing on the roof. He’d climbed up
and across the trellis that covered the patio. Aside from a good scare for
Noel, we’ve delighted in that incident and many others.
I’ll tell you why- because Jeff was LIVING. Way back when that doctor had
said we could institutionalize our baby a phrase came to me. “I’d rather
have him die living, than live dying.”
Dena was born when Jeff was 15 months old. By the time she was crawling, she
and Jeff were already buddies. Jeff loved having another kid around. I
remember hearing, “Mama?” - and if I didn’t answer immediately- “Deena”.
She’d giggle and crawl and he’d find her and be happy because he knew he
wasn’t alone. And as they grew.boy, could they think of things to do!
I remember one morning at 5:30 when the phone woke me and the neighbor
across the street asked, “Did you know that Jeff and Dena are sitting on the
curb?” There they were in their little
footed pajamas sitting side-by-side on the curb, each with a spoon and Jeff
holding the sugar bowl. We have happy pictures and memories of those two
little twerps. What one didn’t think of
the other did.
I recently asked Dena when she became aware Jeff was different in some ways.
Was there an “ah-ha” moment for her?
“Oh there were a 1000 ah-hamoments,” she said,” like people staring, saying
rude things, how a room would get quiet when we walked in.” But her early
memories were “knowing that Jeffy had to go to the doctor and hospital a
lot. Jeffy’s eyes hurt and didn’t work very well”. And she remembers “that
we loved playing together, and that somewhere inside of me I knew that we
needed each other.”
The Labor Day weekend a month and half before Jeff turned two, we were at a
family gathering and Jeff fell off the bed. We rushed him to our local ER
because he “wasn’t right” and we were fearful of a concussion. The doctor
there told us to get to UCLA as fast as you can safely and if a cop stops
you, ask him to escort you. The doctor called UCLA to make certain a
neurologist would be in emergency to meet us.
An EEG and later an MRI were done and showed no abnormalities. Yet Jeff
continued to twitch, fall over and drop into sleep. The neurologist admitted
him to ICU for observation because there were no other imaging tests
available at that time. So began one of the most difficult periods of our
life.
We were told it was probably a seizure that made Jeff fall and he needed to
be watched for episodes, with the observer recording the type of activity,
the date, time and duration. I sat there day after day from six in the
morning ‘til 10 at night and did just that. No telemetry monitoring back
then.
Finally, almost a month later, we were sent home with our toddler totally
blind, unable to stand due to a flaccid right side, and taking two new
medicines: Phenobarbitol and Dilantin. During the next six months Jeff
regained his sight (the blindness was neurological, not eye or optic nerve
damage), and he regained his muscle tone on his right side. Kids often heal
miraculously. During this time, I learned the importance of receiving. Dena
was 9 months old, and though one of us spent time with her every day,
various friends and relatives babysat all those times I was at the hospital.
When I said to one friend, “I don’t know how I’ll ever be able to pay you
back,” she answered, “someday you’ll be able to do something for someone
else and that’s how
you’ll do it.” That’s helped me through many years.
I also learned the importance of taking care of myself so that I had
something to give. Life went on. Traditions were begun. We decided “making
memories” would help balance some of the trauma. We traveled each summer to
Whidbey Island, WA to see my folks. The stories the kids tell about those
trips: from all the car breakdowns to the time we went at Christmas and 13
of us piled into the van to go out in the woods and cut a Christmas tree.
Grandma’s eyes began to sparkle as she watched the kids’ excitement. She
decided a forest of trees would be grand. We cut seven small trees and
decorated them all! Jeff was five at the time but he still tells the story
with great glee.
Noel and I found we needed to work at keeping our friendships alive.
Activities like group picnics used to be routine, now we were often at the
hospital or just too exhausted. We decided we could not isolate and stay
healthy. So our house became a gathering place for our friends and their
children. That way all the kids grew up together and Jeff was just part of
the “gang.” In fact one of the baby boys from those days is now a university
volleyball coach near where Jeff and Kerri live and they’re able to go to
his games.
Noel and I also learned that we needed to keep our relationship alive, to be
just us and enjoy being alone together. We were able to trade babysitting
weekends with another family once a year. There was no respite care in those
days. And you know, the memories we made didn’t cost a lot. Noel was a
teacher and I a full-time Mom.
We filled the rear end of the ancient pick up truck with water for a pool
one hot day. Our yard was regularly strewn with major appliance boxes that
became gas stations, schools, and houses, some even two-story! We’d drive
the van around our half-circle street and gather the kids to go for an ice
cream cone. They cost a nickel at Thrifty’s and I can still hear the
excitement and see their grins on messy faces.
Time passed and education and socialization became important. Dena had
presented us with a model for early childhood development and we were aware
that Jeff had lost some progress through all the hospital times. The Blind
Children’s Center was the only preschool accepting blind children about 40
miles away in Hollywood, less than the distance to UCLA, yea. We
enrolled for two days a week the first year, three the next. Dena and I used
to play outside the school until Jeff was done for the day.
It was in 1975 that the first version of PL94-142 was passed: known as the
Free Appropriate Public Education for all Handicapped Children Act.
It took time, trial and error to implement. In the meantime, the school
districts in our county
contracted with each other to provide for kids with special needs.
Fullerton, where we lived,
educated the children who had developmental delays and kids entered this
public education at the age of three. The blind program was offered in
Garden Grove, two cities away, and they didn’t enroll children until they
were six.
However, after driving to Hollywood for two years, we were happy when the
principal of a local elementary school agreed to let Jeff attend
Kindergarten. I had offered to volunteer as an aide in the other
Kindergarten so the paid aide could be full time in Jeff ‘s room. Well, it
lasted a little while; until Jeff had trouble fastening his pants and came
out to ask the teacher to help him.
She sent him to the principal’s office because he was disruptive. Believe
me, Mother Bear came gallumphing!
Jeff ‘s educational career was challenging. He had good intelligence, but
lacked small muscle refinement that would allow him to learn Braille. The
technology available - such as slides and
mimeograph machines - were all visually oriented. As you know, every kid in
special ed. has his own unique set of challenges and they just weren’t sure
what a kid needed who was blind,
having difficulty with Braille, had a seizure now and then and looked
different enough that no one knew what had happened to him.
On the other hand he was enthusiastic, friendly, courageous, full of ideas
and just couldn’t be stopped! We educated teachers about our child. We
volunteered and brainstormed with anybody we thought could help Jeff. Then
came the days of IEPs, mainstreaming, resource rooms, mobility training to
help him find his classrooms, and the list goes on.
AND there were also Christmas programs, choral concerts, birthday parties,
field trips and Jeff speaking at special events. The really fun stuff.
Another thing about PL94-142, its amendments, and other laws passed since.
These are Federal laws pertaining to education, equality,
access, parent services, transitional and post-secondary resources,
assistive technology, Medicare amendments and rehabilitation programs to
help with job preparation and placement.
You don’t need to know the numbers or names of these laws right now. Just
know that they are easy to find on the Internet. Did you realize that most
of the current law was written in the late
eighties and early nineties? It wasn’t until 1996 that the Internet began to
take off as something to be accessed from home. Talk about how things have
changed!
On to a couple of other events along our road.
In 1972, Lynn, our other daughter, was born. So began another kind of
education and fun for Jeff and Dena. And of course the juggling to meet
medical demands continued. Jeff lost his right eye to hemorrhaging (a
playground accident) at the age of five.
Shortly after, he had to have the first stripping of his gums. (Remember
that Dilantin?) In those
days the tissue was removed surgically and explained to us as, “just like
cutting fat off a steak.”
Now he has it done by laser. We traveled to Stanford University to confer
with one of the first doctors using laser on Port Wine Stains. He said “no
go,” the stain was too large. In the last few years Jeff has had his whole
face done several times while under anesthesia. This has helped the
sponginess, blebs and spontaneous bleeding. So with a new breed of laser -
more improvements.
Then there was the maxillary osteotomy (lateral jaw reduction). The teeth he
lost to hypertrophy of the gums. The nose surgery to clear blockages and the
ongoing shifts in seizure activity with different combinations of meds. The
remaining eye developed a cataract, detached retina, corneal scarring and
finally total blindness. Did you know that you lose colors one by one, and
the
last thing you see is yellow?
I encourage you to share your stories too, because as we share and we really
hear each other, we honor and validate our lives. We learn to value and
respect each other and ourselves.
The challenges our family has faced have become an integral part of us, yet
in many ways they have become mostly background and inconveniences, not the
way we define ourselves.
These you can learn from the stories, thoughts, and reflections that touch
on the things that added balance and happiness to our lives.
First: a disclaimer. We all know there is NO ONE right way to do things.
These stories are about my family, and more than that they reflect my point
of view. As individuals, as a couple, as a family, you will have your own
way of doing things and when it’s honest, respectful of self and others; it
will be right for you and serve you well.
So, what do you envision, those of you just beginning your journey with SWS,
PWS, and KT?
Have you expectations, goals, definitions of success? Great! That means you
have hope and purpose. Does it mean that you will redefine success and
expectations as you go along? Definitely. Because they will shift as you
watch your child define her self.
Your goals may become more overriding and less specific: “Our kids will have
fun memories;” “We will learn to forgive and move on.” Your expectations
will be tempered by acceptance, because none of us wants to damage another
by imposing the impossible. You will celebrate and respect the learned and
innate abilities of your child and your partner.
And that relationship with your partner? It will be tested. I hope that by
this time, all couples who are raising children with unique challenges have
promised each other that they’ll stay for the long haul. There will be times
when you are too tired, have no reserves, don’t like each other very much,
would do it differently than your spouse.
These too shall pass and you will be really glad that the one person who
truly understands is still there. Of course that’s assuming they’re not
abusive! By now you know that your life is going to be full of questions.
Live into the questions. Avoiding them creates fear and tension which robs
you of your energy. Use that energy for movement, finding answers and
advocating for your family. Now how about this? Picture viewing your life as
a mystery unwinding.
Oh, I have another story. When we attended our first SWF Conference, Jeff
was 25 and Dena 24. Dena couldn’t get there until after the meeting had
started. I saw her come in, stand a bit in the back and then leave. I went
to find her. She was sitting in the lobby crying. She looked up at me and
said, “It’s the first time I’ve ever seen anybody else.” After all those
years, we weren’t alone anymore.
None of us are alone anymore. The Foundation has a wealth of information and
more answers being sought through research. There are brochures for schools,
doctors, siblings, etc. We are finding more and more ways to help our
children. Let’s focus a bit more on the children.
I’m a trainer for the National Critical Response Team. I train the people
who work with children in the midst of national disasters and mass traumas.
Much of what I teach there fits for us: e.g.: safety, how to BE, self-care,
and debriefing. In times of trauma our first priority is safety; physical
and emotional. That sounds easy when you’re at home or in the hospital, yet
safety requires intentional actions. Kids feel safe with consistency,
structure, routine and simple age-appropriate rules.
Also in times of trauma - for us often represented by medical procedures and
seizures - children need more quiet, less stimulation and fewer demands so
they feel safely contained. Your home
really is your haven. During demanding times we teach caregivers to BE with
children, JUST BE. Wait, watch, wonder, and LISTEN. Take your cues from the
child. If you find yourself imposing activities, talking or explaining too
much, you’re probably coping with your own fears. Children pick up on that
in a hurry.
Mirror your children’s feelings, then comfort them; when they don’t have to
make excuses or “chin up” one more time, they learn it’s O.K. to be
themselves. They feel more confident and begin to learn empathy and
understanding.
I’d like to pass on some things I’ve learned through the years. It’s common
sense stuff, so will sound familiar. But if someone hears a new idea or two,
or just feels a sense of kinship and renewal, I’d really like that.
Here’s the list..
1. When our children are born with KT, PW or SWS our hearts are broken. We
must attend to healing our own hearts, and soon. If we remain despondent,
this is what our children learn, and deeply. Later, they’ll have trouble
feeling joy. Heal your heart: you’ll be healthier, your baby will be happier
and then you’re happier - a great cycle.
2. Be kind to yourself when you slip. There’s always too much to do, so
forgive yourself if you don’t do it all. I’ve felt the shame of not “doing
enough” and now I know I’ve done more than I ever thought I could!
3. Be aware that each of your children have unique needs, gifts and
abilities. Find time as parents to be alone with each of them.
4. Be intentional enough that the demands don’t run away with you, yet
flexible enough to adjust.
5. Be thankful. An attitude of gratitude will fill you with peace to face
the hard times.
6. Give defensiveness a break or it will break you.
7. Maintaining balance means time alone to restore you. As family members,
guard against being so enmeshed that you sink each other.
8. Remember that your child is a child who happens to have some problems;
not a problem with a child attached.
9. Don’t get in your child’s way. That wasn’t easy.
10. Try this on: “The antidote to fear is love.” Let your love loose to be
all it wants to be.
11. Try to equalize the demands and the kindnesses you have between all your
children.
12. Stay open to possibilities. As Jeff went into his teen years, it became
more difficult for peers to be friends. However, he found some very special
elderly friends who had time and fewer inhibitions about who their friends
would be.
13. Your hard drive is wired for perseverance, tenderness, anger, patience,
joy, and the sobbing that expresses sadness and cleanses. Your children are
wired that way too.
14. Sometimes there are unexpected perks. We had a talking computer and
color television way before others had them (and way before we could afford
them).
15. Focus on the quality of life, not the quantity. Your family becomes
stronger as you celebrate
your victories big and little, as you enjoy games, family stories, reading
together, and laughter.
16. Embrace the moments that feed you. Create a storehouse of good feelings
and images to
revisit when you need respite. A two-minute break envisioning a beautiful
sunset, a favorite trip,
or a special moment with your spouse can do wonders as you sit beside a
hospital bed.
17. Simplify, simplify, simplify.Especially in times of stress. A clean
house sometimes just
doesn’t matter, but paper plates do!
18. Last thought: WORDS. Give your child words to help him. Give her
siblings something to say: “Oh, it doesn’t hurt. She was just born that way,
like you have brown hair.” Give yourself words: “He’s the most courageous
person I know.well-adjusted and happy too.
Oh golly, I just thought of another story. This is one where Jeff thought of
his own words:
He was quite little and someone, seeing his birthmark asked me (as if Jeff
was a rock or something) “What’swrong with him?”
And before I could say anything, Jeff piped up, “Oh, don’t worry, I’m only
blind.” Talk about perspective!
When I began, I told you how much my family were a part of this
presentation.
I asked Noel, Jeff, Dena and Lynn: If you were giving this speech what would
you want to highlight?
I felt their answers were eloquent in their honesty and would like to share
some of what they wrote.
Lynn is 6 1/2 years younger than Jeff:
“When your heart and your mind are able to wrap themselves around the
differences, and truly understand them, then the impact is made. Then your
world is changed. Then you have empathy for people who are different, no
matter how “normal” you are. That’s the greatest gift Jeff has given
me.insight.the ability to accept people for exactly who they are. No
judgements. no biases. just openness to understanding.
Dena, is 15 months younger than Jeff:
“That we’re all beautiful; that we’re all challenged; that doing your best
for yourself and for others is essential; that working together brings us so
much further than we’d be otherwise; that love cannot be learned or
understood unless it is experienced and practiced; that our Creator doesn’t
make any mistakes - we are unique and precious and loved unconditionally.
Traveling together makes all the difference in the journey and blesses us
with someone to share the joy of arrival. We’re gonna get there together, or
we may not get there at all.
Life is good; it’s a gift; aren’t we blessed to be a part of living the
story!
Jeff wanted you parents to know:
“Let your kids take risks, make choices, and reap the consequences.”
.also..
“Probably the biggest favor you can do for someone with Sturge-Weber is to
be yourself, be honest. Who cares what society thinks? They’re the ones that
lose out, not you.”
Noel, the Dad:
“There hasn’t been a time in my adult life when I walked into a room with my
family that I wasn’t aware of our differences. You have to let yourself be
open, vulnerable, to let people be friendly and let them know you’re
friendly, and still toughen yourself to let the feelings roll off
your back and not guide your actions or reactions. The protectiveness a man
feels for his family is really strong.”
Then I asked Noel to consider what he might want to share particularly with
Dads. He sat for a long time and then he wrote:
It took two of you to make this child. It will take two of you to raise this
child.
We men often carry a traditional Dad’s role - leaving much, sometimes most
of the child-rearing to the women, the mother. You are not in a traditional
situation, so you can’t afford to ignore the sometimes emotional, sometimes
physical needs of your family members - particularly
your wife.
. Help her to talk to you. She likes to talk. She needs to talk. You need to
help her do it. She may not want solutions, just a willing and able
listener.
. Help her with the kids - playing, babysitting, changing, putting to bed,
getting up at night, working out solutions. Making money and mowing the lawn
isn’t enough.
. Help her get away now and then - a weekend out of town with a friend or
two or three — maybe other mothers in need of a break.
. Learn to cry with her if you don’t already.
. Help her so well that others will describe you as “an amazing Dad”, an
amazing man. I love that!
I thank you for being here for wanting so much for your children, for
listening. I encourage you to tell your stories, starting here, then with a
dear friend, a trusted neighbor.
Share your families, talk about life and death, about healing, about your
spiritual beliefs. Share your hopes and dreams, your fears and sorrows. When
you do, you will get and give more than you can imagine. My wish for you and
your families is that you rage and weep when you need to, recognize the Holy
moments, find joy and live fully. Then we can all say, “WOW! What a journey,
a marvelous, unbelievable journey we’re having along this road.”
Sharon is a licensed Marriage and Family Therapist in CA. She is the mother
of Jeff who is 42 and has SWS/PW/ glaucoma and is blind. He is an advocate
in his own right for adults with disabilities .The Gilberts have been with
the SWF since 1990.
The Sturge-Weber Foundation
Mailing Address: PO Box 418, Mt. Freedom, NJ 07970
Physical Address: 1240 Sussex Turnpike, Randolph, NJ07869
Phone: 800-627-5482/973-895-4445 Fax: 973-895-4846
Web: www.sturge-weber.org
