Zen and the Art of Raising a Child with Cerebral Palsy
- 1. Parent Advocacy
Zen and the Art of Raising a Child
with Cerebral Palsy
by Cindy McCombe Spindler
March 7, 2013
INTRODUCTION THE STORIES
In thinking back on what I have learned in raising my daughter Jillian, now at 1. A Surprising Strawberry ā Jillian inching her way up the milestone chart.
age nine with a cerebral palsy diagnosis, my mind goes back to a Zen 2. A Strawberry for Mom ā Overcoming my fears on assistive devices.
Buddhist koan about a strawberry, which I had explored years ago as part of 3. A Magic Strawberry ā Whatās my role in raising Jillian, again?
a college philosophy class. 4. Strawberry Love ā Jillianās first encounter with her stepdad.
A man traveling across a field encountered a tiger. He fled, the tiger 5. A Strawberry Like No Other ā Jillian morphs from patient into athlete.
after him. Coming to a precipice, he caught hold of the root of a wild vine 6. The Other Strawberry Patch ā Jillianās āotherā activities are often more
and swung himself down over the edge. The tiger sniffed at him from fun anyway.
above. Trembling, the man looked down to where, far below, another tiger 7. Double Strawberries ā Jillianās first best friend and their dĆ©but.
was waiting to eat him. Only the vine sustained him.
Two mice, one white and one black, little by little started to gnaw away
the vine. The man saw a luscious strawberry near him. Grasping the vine
with one hand, he plucked the strawberry with the other. How sweet it
tasted!
After a group discussion, my philosophy class concluded that the straw-
berry represents the present moment, the tiger above represents birth,
and the tiger below represents death. The vine means different things to
different people. The situation, although it seems rather precarious at the
moment, represents the middle point oneās in life. It also represents the
present in any situation.
I can conclusively say that it has taken me nine years to get to the point
where I feel like I am seeing and eating those strawberries while rais-
ing Jillian. We have had our share of challenges. But as I look back over
Jillianās life and our evolving relationship, I see that we have had more
than our fair share of strawberries. Iād like to share a few of them with you.
Read one or two ā whichever seem to pertain most to your life.
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 2. 2
A Surprising Strawberry
Jillian inching her way up the milestone chart.
I
put Jillian down in her crib, just as I had done many nights before. Although
she was certainly big enough to sleep in a toddler bed, I kept her in the crib,
as there was no risk of her climbing out of it due to her gross motor delay.
Our routines ran deep. One morning, I heard Jillian babbling in her room. I
got up and went to go see her. As I rounded the corner, I saw something un-
believable. Jillian, for the first time, had figured out how to stand up in her crib.
She had her hands wrapped around the railings and she had stood up! She was
so eager to show me what she had accomplished. It was a moment I will never
forget. My heart exploded with happiness. Not only was I delighted with the
move up and to the right of the Denver II, a chart I used to monitor Jillianās early
social, language, fine and gross motor language skills, I was so thrilled with the
inner glow that radiated from her. She was so proud of herself.
Now that I have the benefit of life experiences with Westley, Jillianās younger
brother, I know that it is rare for us parents to rejoice in every one of our chil-
drenās accomplishments. These special celebrations are reserved for those
parents and kids who had to work harder to navigate these transitions. And that
day, Jillian had done just that.
She inched her way up the milestone chart.
Jillianās Age: 1 year, 6 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 3. 3
A Strawberry for Mom
Overcoming my fears on assistive devices.
I
t was time for Jillian to get a walker. The day Jillian got her red wheels, I
almost had a sense that she was thinking, āItās about time!ā Previously, I had
her enrolled in a preschool class for a few hours at a time. What she found
interesting was ambulatingāpushing chairs around to get from one station to
the other. When we got home from physical therapy, I decided we would go up
and down our block to practice. The grade was even, and it would be fun to go
outside to get some exercise and maybe socialize with the neighbors a bit.
āThis is the first time she has been able to interact with them by herself
without me holding her up,ā I quickly realized. But what had initially been a
fearful forethought, quickly turned to something very different. Over the next 15
minutes or so, many neighbors came out to greet Jillianāin fact, we talked to
people we had never talked to before. She gave each one of them her biggest
smile. They offered so many words of encouragement. It was crystal clear to me
at that moment that assistive devices are great. My fear dissipated just like a
needle to a helium balloon.
Jillianās Age: 1 year, 10 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 4. 4
A Magic Strawberry
Whatās my role in raising Jillian, again?
I
was planning a trip to see my family in Colorado. In order to make the trip
easier, I wanted to get Jillian new shoes. The braces she wore at that time
were cumbersome. It took quite a while to put on socks, strap on the braces,
and then tuck the braces into oversized shoes. I also thought that a pair of
lightweight shoes might be a good break from the clunky, yet sturdy, system we
used to protect her feet and align her knees.
I found some sandals. I put them on Jillian, and guess what happened? She
started walking. Not just the one or two steps she took before, but many, many
steps. I followed her around in amazement. She walked behind counters, and
areas that are generally off-limits to people in the store. The best part of this
miracle was that it was not a medical-based miracle. It wasnāt a miracle derived
from scientific data. It was a momās intuition. The lightweight shoes are what
she needed at this time in her life. The braces werenāt put away by any means,
but the āmagic shoesā were definitely worn a lot that summer. I felt as though I
was reacquainted with my role in Jillianās life yet again.
Jillianās Age: 2 years, 10 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 5. 5
Strawberry Love
Jillianās first encounter with her stepdad.
T
ransitions are often hard, and my transition from being married to being
single again was definitely a challenge. After a few years of getting situ-
ated, I decided to brave the waters of dating again. Hereās the story of
introducing my second husband to my children.
I often took the kids to a special park. The plan was that we would all meet
there. As John parked his car, I pointed him out to the kids. To my amazement,
Jillian ran toward John, never having met him before, with her arms stretched
out wide and welcoming. She gave him a big hug and said, āI love you.ā In fact,
she told him this so many times that day, that little brother Westley pulled her
aside for a ābrotherly lectureā a couple of times: āYou donāt love people you donāt
know, Jillian, and you donāt know him!ā
In the next few hours, we flew kites, rolled down hills, played on swings and
slides, and ran through water. We had ice cream. Afterward, we said goodbye
standing next to our cars. Jillian stayed behind for a minute to talk to John. I
wouldnāt find out for several months what she had asked him at the time. When
John later told me, I was pretty shocked and surprised. āAre you going to marry
my mom?ā she had asked. Thank goodness that didnāt scare him away!
Jillianās Age: 6 years, 10 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 6. 6
A Strawberry Like No Other
Jillian morphs from patient into athlete.
M
y husband is an elite marathon runner. I asked him to try to get my son
interested in running, and he succeeded. But much to both of our sur-
prise, he also got Jillian interested in running. One of the most amazing
moments of my life was running alongside Jillian during her first race.
Imagine getting a delicious strawberry where you least expect it. That is pre-
cisely what happened on that day.
I woke up at 2 a.m. the morning of the race. It was raining outside, but I had
a feeling that wasnāt going to stop us. As the sun rose, the family began to stir.
We all got dressed, grabbed the signs that we made for Jillian and Westley. Jil-
lianās two requests were that people would be at the finish line cheering her on,
and also that they would have signs that had her name on them. We drove to
Legolandāthe location of Jillianās first race. I was running the race with her. Jil-
lian and I locked hands near the start of the race. It was time to go, and neither
one of us had any idea of what was in store for us.
The rain started coming down harder. It made for a supremely scenic runā
Legoland in the rain. We kept putting one step in front of another. I realized we
were passing several kids that were Jillianās age. A few times, Jillian said she
was tiredābut she kept going. She never walked a single step.
The finish line was closing in. We looked to the left of us and saw some very
loyal family members holding up their signs. We smiled. We crossed the finish
lineāand we both began new lives. Jillian proved to herself that she could be a
runner. For me, a moment of realization came. I saw my daughter morph from
a āpatientā to an āathlete.ā It was a moment I never expected to experience. A
strawberry like no other.
Jillianās Age: 8 years, 5 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 7. 7
The Other Strawberry Patch
Jillianās āotherā activities are often more fun anyway.
D
uring the course of any day, there are times when Jillian needs to do an
alternative activity. We were at the Natural History Museum in San Diego
one Sunday when that happened. The family went in to see a 3-D movie
about sharks. Jillian made it until she saw her first shark, and then she told me
she had to leave. As she has occasional seizures, I donāt question her when
she feels as if something will be too stimulating. What would we do for the next
hour?
I talked to someone working in the museum, and they told me there was a
kidās science show starting in a few minutes. Jillian and I made our way into the
room. We were able to secure front-row seats. After a brief introduction about
bees, it was clear that the science teacher was going to have the kids act out
various roles in the bee colony.
The first role assigned was the queen bee. āWho wants to be the queen
bee?ā the teacher asked.
Jillian was the first to raise her hand. She was the first picked. She went
before all the kids. I tagged along, but only to provide minimal assistance. Jillian
got to wear a tiara.
After all the bees were assigned and in costume, Jillian got to throw small
marshmallows into a beehive. They fed her, they protected her, and they
cheered her on as she was in charge of making the colony a larger one. The
kids had a wonderful time putting on this ābeehive showāāall of them, includ-
ing Jillian. Just as the demonstration was over, my cell phone rang. The movie
was over, and it was time to meet up with the rest of the family. I knew Jillian
and I had a story that would make the other children wish they were being ābusy
beesā instead of watching sharks for the last hour. And I sure was right!
Jillianās Age: 8 years, 7 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 8. 8
Double Strawberries
Jillianās first best friend and their dĆ©but.
I
started my career in disability advocacy in August of 2012. I made a
concerted effort to network with advocates, and I seemed to have aligned
much of the work I do with a non-profit in San Diego called Kids Included
Together. KIT provides best practices training for community-based organiza-
tions committed to including children with and without disabilities into their
recreational, child development, and youth development programs.
I saw on the KIT Facebook wall that they were going to film a commer-
cial on inclusion and were looking for a few pairs of children with disabilities
along with their best friends. I let KIT know that I would be happy to have Jil-
lian in the commercial, but she didnāt really have a best friend. No sooner did
I say that then her first best friendāa wonderful girl name Chloe ā entered the
scene. Organically, Chloe started hanging out with Jillian at school. Jillianās
teacher urged me to contact Chloeās mother, and her mother was happy that
I did! We all agreed to drive up to Mission Viejo to film the commercial.
Both Chloe and Jillian had a blast! I was simply amazed to watch Jillian in
front of the group. She was funny, alert, and did whatever was asked of her.
She kept looking above her head at the boom microphone. Sheād ask, āIs this
thing on?ā Halfway through her filming, I could see that the producers had
fallen for her. They saw beyond her disability. They could see the wonderful
person I get to be with every day.
Chloe had an awesome time, too. In the end, several commercials were
made. The goal is to air them to a national audience. When the day ended,
both girls had a hard time leaving the buildingāand each other. (I still think
they would be quite happy if they could live at the studio!) Today, their friend-
ship continues to grow. I think their example of friendship is a powerful oneā
perhaps two strawberries will form outshoots and many more strawberries
will blossom and bear fruit, too.
Jillianās Age: 9 years, 3 months
Ā© 2013 AbilityCatcher | www.abilitycatcher.com
- 9. 9
SUMMARY:
Parenting a child with cerebral palsy is a fantastic experience. In a way, it is
completely freeing. I have been able to let go of expectations and see what the
day delivers.
Try to think of the strawberry moments in your life. I think if you look hard
enough, you could probably come up with one or more per day. Enjoy your
timeāyour strawberry moments. Donāt waste your moments, wishing to trade
away any situation that is yours. Plant yourself firmly in the ground, and become
one with this experience.
Most importantly, happy strawberry picking!
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Contact Cindy McCombe Spindler, the President of AbilityCatcher, at cindy@abilitycatcher.com.
Ā© 2013 AbilityCatcher | www.abilitycatcher.com