Tag Archives: cerebral palsy

Just believe

Tonight I donned a haute-couture lead apron at our local emergency x-ray department.  I’m not usually togged out in such glamour, but have been known to grace this establishment on more than a few occasions with Julie.  It’s an odd dance, the one taken by a parent when a child becomes desperately ill.  The child is really the patient … but the parent is definitely part of the equation.  It’s so interesting to see first-time parents and remember  what we used to be like and how we used to react.

The emergency room parent encounters the most difficulty when their baby or non-verbal child is screeching and screaming.  It is often harder for this parent to allay their own fear than that of their child.  I’m sure you’ve seen the parent (actually we’ve all been there) who gasps to the triage nurse, “I’m not sure what is wrong.”  As the nurse starts to write in the chart they then blurt out something that sounds like, “his tongue’s gone green” …  or “I am sure her hands weren’t that pink and purple colour yesterday”  …. or even a tearful “I lost the paring knife while I was making the soup … and I’m sure she swallowed it without me noticing!”

When we first started on this road, AJ and I were no different.  Our baby may have had multiple medical problems but we were not ready to be her parents and continually flubbed it.  We found it difficult to decide what was important and what wasn’t.  We missed ear infections, and then took Julie into emergency with nothing more harmful than a stomach ache.  We tried our best, but we couldn’t sift important information from the ordinary.  We were both horrified and hopeful.  We “listened” to the advice, but didn’t really understand many of the medical terms.  I suppose it’s no different when you’re learning a new computer program.  At first it’s almost impossible to learn, and then you “get it.”  The first piece of software is the worst, and then you learn to navigate around almost any program you’re given.  After a while you find that you’re becoming more “savvy” and you catch on comparatively quickly.  It is the same with being a parent of a kid who has complicated medical issues.  And sometimes … to be honest … it’s better to not know what the future holds.

I still remember our fear when we were told that our baby was going to be delivered at 28 weeks.  I can’t imagine how scared we would have been if we had been told that Julie would have congenital heart disease … acquire brain damage from the surgery … develop a blood clot … end up with liver disease … develop immune deficiency … and so on and so forth.  If that had all been dumped on us right from the start then I can tell you without a doubt that we would have lost our hope.  It may sound odd, coming from a parent of a child who has developed such complications, but you really do need to keep a picture in front of you at all times of what you hope for your child.  If you can’t do this, then try and surround yourself with people who are there to support you and your child and just keep your heart open.

Twelve years ago someone reached out to support me during a time when I was at risk of losing hope.  I was walking forlornly down the hospital corridor one evening, pushing Julie in her baby stroller after having visited emergency yet again.  Our little baby who had survived being born at 28 weeks, had then developed further brain damage following open heart surgery.  Our trip to the neurologist the week before had been like a nail in our coffin, so to speak.  “She’ll never be normal,” he had said.  “Just take her home and enjoy her.”  Instead, I had cried my eyes out.  What parent would enjoy being told that their beautiful, happy baby would never be normal.  It was one of the saddest moments of my life.  As I wandered despondently down the corridor I saw a nurse who had known me from the antenatal unit.  She asked how things were going and I told her.  She didn’t know all the “facts” but she sensed my turmoil.  Twelve years later I still remember her next words as they burned into my soul.  “Just believe,” she said.  Simply … “Just believe.”  I have never forgotten that moment.

When I was able to finally “hope” again, I changed the world for Julie.  Instead of just accepting medical diagnoses I started to reflect on this information.  With the support of her wonderful pediatrician I initiated decisions as to when she should have her blood tests, and even had the results faxed to our house so I could get a “feel” for what was happening.  As the numbers of physicians involved in her care started to increase (at one point I think she had 14 or 15 physicians and specialists at a time) I found that I became an important part of her care.  I was the person who provided the stability and the continuity as I was the only person who was attending all the appointments with her.  When I started reading medical journals on the internet to make sure I understood the jargon … interesting thoughts and theories began to materialize.

“Hmmm,” I thought, and prompted an ultrasound technician to check Julie’s liver during a routine kidney ultrasound.

“She seems to be missing some hepatic veins,” she said.  “I think I’ll call a doctor!”

That was the start of many more appointments, and also the beginning of new hope for Julie as light was shed on her condition.  It was heartbreaking to learn that Julie had tested positive for high amounts of ammonia in her blood, and it was also a big shock to realize that her brain damage had been ongoing and that some of it could have been prevented by better controlling these chemicals.  As we explored her conditions, it led to much more knowledge, culminating in a better approach to her care.

Tonight, Julie left emergency with no clear diagnosis.  She had many tests and will go back tomorrow for more.  In the meantime, she was fussed over by all the important people in her life who love her and who help her to cope.  One of these important people is her sister Claire.  By combining her endless energy, goofy behavior, and penchant for inventing “on-the-spot” rap music (today she invented a song about a butterfly who forgot to fly and fell out of a tree) she managed to get Julie to calm down.  Once Julie was in the examination room and slightly more cheerful, Claire started inventing rude noises with her mouth in honour of “Oglington Fartworthy,” one of Julie’s favorite characters in Nanny McPhee.  When she then followed this with “Je m’apelle Stinky” and phrases unlikely to have been picked up in French immersion, Julie actually grinned and chuckled.

Many years have passed since Julie made her first trip to emergency and she is now starting to become her “own person.”  As we hold her hands and walk her journey with her, we can only hope that she is able to develop her own sense of hope.  Until then, we show her how much she means to our family, help her to be courageous, and encourage her to … “Just believe!”


Anne’s dream

Just a note:  Thank you everyone for responding so heartily to my latest post.  I had to change the kids names once again (in order to be more obscure) as this site is starting to be more well-read than I had realized.  It’s better to do this at the “beginning” but rest assured I won’t do it again.  Sorry for the confusion.  Back to my blog ….

This evening I heard very sad news from a friend.  Her dear father passed away today after battling cancer for many years.  He went in peace, but leaves a legacy of people who love him very much.  His daughter, who came to be known in our family as “Anne of Green Gables,” lived with us for over a year as a foreign adult student from Taiwan.   Anne’s dream was to finish her graduate degree in an English-speaking program, and she eventually “toughed it out” and now has her doctorate.  This feat is amazing, no less because she had all the cards stacked against her.  Having done a graduate program myself, I fully understand the pressure and sheer amount of determination to complete the workload.  Not only did Anne surpass many of her classmates who speak English as their first language, but these were the years during which her father was dreadfully ill.  Supporting him from afar, she was alone with her fears and grief.

We are surrounded in our lives by an invisible mesh of friends and acquaintances who touch us in ways we can’t comprehend.  We will never know how hard it was for Anne to pursue her dreams, and we can only hope that we were there to support her at the moments when she needed it most.  We have a happy home – perhaps this helped Anne to “stay the course.”  To be honest, though, the happiest parts of our lives are those spent with family members and those who have shared in the lives of our dear ones.  Anne was a valuable part of Julie and Claire’s life experience, and was actually living with us when Claire came home from hospital for the first time as a baby.  I would like to think that I altruistically helped Anne, but to be honest I think that she helped me as much as I helped her.  My previous experience of pregnancy, with Julie, had been fairly grim and she was three months premature.  Eight years later we were finally brave enough to consider have another little one, discovering almost simultaneously that our older daughter Julie had life-threatening issues that involved her liver.  As if this weren’t bad enough, we were told halfway through the pregnancy that I was going to have a really rough time … and that we should consider termination.  Apparently my life was at risk, the baby’s life was at risk, and/or I would end up with another child who had disabilities.  Deciding to continue with the pregnancy was a terrifying decision, but one I have never regretted despite the outcome.  Claire was delivered at 31 weeks, did remarkably well, and now runs circles around us.  The effect on my body, however, was severe.  Due to post-surgical complications I didn’t clot, needed five units of blood, and had to have the incision reopened to drain over several weeks as the swelling from the internal bleeding started to cause nerve damage.  A short time later I developed auto-immune disease and it took many years before I was free of pain and before my iron levels (with the help of multiple transfusions) returned to normal.

It was while I was in hospital following Claire’s delivery that I met Anne for the first time.  I was surprised at how well she spoke English, but also quite surprised that she managed to walk right into a terrible situation like this and not be bothered by it.  When I returned home she was kind and non-demanding, and I found that I really enjoyed her perspective on life.  Perhaps it was due to the fact that Anne was struggling with the illness of her father and was willing to talk about “issues” … or perhaps it was due to the fact that Anne had a soft-spot for Julie and the discussion seemed to often focus on the topic of disabilities.  Either way, we found many things to discuss, including the treatment of individuals with disabilities in Canada and in Taiwan.

Anne confided in me that life is not always good for kids with disabilities in her country.  I had heard of this before but I was, nevertheless, shocked at what she had to relate … As Taiwan has no nationally supported education system, families have to pay for their child to attend school and have to pay for the extra supports that are needed by that individual.  If you are born with a disability in Taiwan, as in many other countries, you may be relegated to a life of incredible misery and deprivation.  If you come from a well-to-do family who can afford to send you to school then there is no problem.  However, you may fall through the cracks and experience abject misery if you are born into a low-income family.  In some cases, Anne related, the child is left on the floor next to a pile of food, and the parent will depart for work.  She told me that this happened very often … this was almost inconceivable to me.  I can’t comprehend the decision tree that would lead a parent to make such a bad choice for another human being  – their own child.  I would rather not try to imagine being that child.  Being alone and crying … but with no-one to hear or respond.  No-one to care for you or comfort you.    As we have “lived the life” with our Julie, this really bothers me.  Julie can’t talk or walk, struggles to use her hands, and is considered deaf-blind.  However, she is so sensitive and emotionally fragile.  So … alive!  It just breaks my heart when she becomes sad and her big grin is replaced by tears.  In the case of these poor children in Taiwan, they are not considered “human” in the same way we are.  The community and government have forgotten about them.  They have become “non-entities.”

I hadn’t meant to write a blog that was SO sad today, but I wanted to prompt my readers to think very carefully about their own lives.  Sometimes there are things we can do without, and sometimes there are excesses we don’t need.  For as little as $35 a month you can actually change someone’s destiny by sending a child with a disability to school.  We have had many heartaches in our family in recent months, and have struggled in many areas.  All around us, the effects of the recession rage.  Our reaction to those events have the potential to destroy our very soul within us and render us sub-human.  Within this darkness we have a chance to redeem ourselves – as we reach out to others we are, in fact, healing ourselves.   The potential of what we can do may be far-reaching and change the destiny of one child – or perhaps entire families or villages.

Five years ago we found a young boy in India to sponsor so that he could attend school, and have watched his progress with baited breath.  His daily educational struggles haven’t been easy for him, and we appreciated the charity for charting his progress in an honest yet respectful way.  Now that he is older and becoming fluent in sign-language for the first time, we are feeling very proud of his progress.  When we first “found” him I was a bit disappointed as I had wanted to sponsor a child in Africa.  However, it took many phone calls before we found a charity that actually had enough information on each child that they could tell us within a day or two who the child was, their level of disability and support needed, and other needs of the family.  Most charities said they would “research” the question but never actually found us a child with a disability.  The Christian Children’s Fund of Canada guaranteed that they would assign a child with a disability to us.  They had special sponsorship requests for kids with disabilities, had partnerships with local schools in developing nations such as India,  and – despite their Christian mandate – would accept any child of any religion for sponsorship within the support of their own family and culture.  In addition, local groups within certain countries have formed partnerships with CCFC so that they can take a greater initiative in improving their own community.  Our “child” attends one of these schools in just such a village.  The community surrounding this boy decided not to let their kids with disabilities suffer.  They took it into their own hands to improve his life, and the lives of children like him.  We are happy to say that due to our sponsorship this boy is able to attend his local school, is now receiving transport to a school for the deaf several days a week, has had orthopedic support with braces and surgery for his cerebral palsy, and has even had enough money to take a small “holiday” with his parents.  Throughout the year we are also given the option of gifting his family with chickens, cows, goats, or other items that can be used in a micro-enterprise to improve their economic status.

There are many days when we go about our lives in much the same way we did the day before.  We “act” upon the world around us, but our actions merely affect how much cream goes into our coffee, how much detergent goes into the laundry, how much plaque we brush off our teeth, etc.  It is Anne’s dream that children with a disability will be given a chance for an education.  Please join our family and act in a way that really counts – help to change the life of a vulnerable child with disabilities.  For those of you who know Anne, please consider sponsoring a child today as we remember Anne’s father.  For others who have joined this blog, please consider helping in honor of those we love who have cancer, and also for all the brave children in our lives who have disabilities.

Christian Children\’s Fund of Canada