Life Doesn't have to be Perfect to be Wonderful
Updated: Oct 14, 2020
As it appeared on Aish.com
Having a child with special needs invariably prompts people to say the most irritating things to you in an ironic attempt to bring comfort.
“God chooses special parents for special children.” “You must be so strong.” “She doesn't look like she has Down syndrome.” “Down’s kids are always so happy!” “God only gives you what you can cope with.” “Why didn't you find out before she was born so you could do something about it?”
Some statements are outright disgusting, but I do realize that most people are well meaning. I usually bite my tongue, but sometimes I respond (because I can’t help it): “How do you feel that God apparently does not consider you strong – or special – because He did not give you a child with special needs?”
I once commented to someone that I could not understand why people abort babies with Down syndrome. The person, who totally missed the point, responded, “Well, at least Caila’s high functioning.”
After all the inappropriate comments we encountered after Caila’s birth and the ongoing battles we had for Caila’s acceptance in several different settings, we were a bit… frustrated to say the least. So much so that my husband, Gavin, wanted to print a T-shirt that would make a statement: “I have an extra copy of chromosome 21 as a reason for my cognitive challenges. What’s your excuse?”
We would all wear these shirts with pride as a family hopefully bringing truth and clarity to the world and a heavy dose of sarcasm for people that just don’t get it. I stumbled upon a quote that aptly sums up how I feel about us parents of children with disabilities: “You never know how strong you are until strong is your only option.”
That’s more like it. Many days we are tired, and we don’t want to put in the extra hours and resources – but that is simply not an option. This doesn't make us particularly “strong” or “special,” but it certainly does take more out of us on every level.
What people could say is, “Wow, this is going to be a tough journey.” “Is this hard for you guys?” “It is probably going to take more work as a parent.” And most importantly, “Mazal tov!” Only one couple said that to us at the hospital. A child is a blessing no matter what the diagnosis.
When you first give birth to a baby with special needs you are inevitably forwarded the famous essay by Emily Perl Kingsley, “Welcome to Holland.”
Kingsley, who herself has a child with Down syndrome, wrote the piece in 1987. The premise is that you were planning a vacation to Italy, but the plane landed in Holland instead. The metaphor being that you give birth as expected only to find out the child comes with a surprising diagnosis. Not going to Italy, your dream vacation, is disappointing if not devastating. Holland isn't what you planned for, but you come to find it is beautiful in its own way.
Meanwhile, all your friends do end up going to Italy and they tell you how great it is. “And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss,” Kingsley writes. “But…if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
Parents of children with special needs have a love-hate reaction to this poem. On one hand, when I first read it, I agreed with the overall analogy. A lot of it is true – Kingsley would know. On the other hand, Kingsley should have noted that going to Italy would have been like staying at five-star hotels. The trip to Holland is like a budget backpacking trek where you have to plan each step, lug your own bags, cook your own meals, take public transit and face traveling challenges every step of the way. Being a parent of a child with special needs is hard work. Holland may be a wonderful place to visit, but in this analogy, it is no vacation.
I would quickly learn that my work was never done. The productivity and efficiency that I was used to in business and home life was extremely challenged after Caila’s birth. For example, doctor visits which were routine for my other children – the usual colds, flus and odd broken bone – were intricate and numerous for Caila. We were swept up by a myriad of appointments after her birth to check for all possible medical complications related to or caused by the extra chromosome – from eyesight and hearing to possible thyroid issues and leukemia of all things! Many of these checkups would morph into annual appointments to make sure she was still okay.
"When we are no longer able to change a situation, we are challenged to change ourselves." Viktor Frankl
Then we set out to discover what our rights were and what therapies Caila was eligible for by law. Procuring all the therapies and interventions – and ultimately cramming those into our busy lives – was the next challenge. Speech, occupational, physical therapy sessions are just a sampling of the new additions that crept into our schedules.
As parents, our goal has always been to make sure Caila gets what she needs and deserves by law. Under the Individual with Disabilities Education Act, a child is entitled to a Free and Appropriate Education (FAPE). Many times, what the Education Department deems as “free and appropriate” is at odds with what the parents believe. I heard one scary example where an administrator determined “FAPE” for a wheelchair-bound child was at a school with no elevators!
To be frank, it was all overwhelming – and still is. When Caila was born we briefly dwelled on, “Why us?” Then with a surge of hope and inspiration we said, “Of course us!” But as the years progressed, many days we plead, “Oh my God, please help!”
We were drowning. In wanting to give Caila the best, we stretched our resources to the maximum.
I believe that I adjusted well to Caila’s diagnosis because we only found out on her third day of life. By that point I had cuddled her and had gotten to know her for the baby she was and not through a label. The social worker assigned to Gavin and I shortly after Caila’s birth insisted that our lack of sorrow was abnormal and there must be something wrong with us. I did confess to her as we prepared to take a trip to South Africa to bring Caila to meet her grandparents that I was petrified… about the crime there. She threw her hands up in disbelief: “The crime in a distant country nags at you more than your daughter’s diagnosis?”
My first concerns were focused mainly on how Caila’s diagnosis would impact our other children and our fast-paced lifestyle. As time moved on, I began to see the world differently. Caila had challenges, but she was an adorable and interactive baby and toddler. And life was still “normal.” Caila became the light of our lives and that of our extended community. Rather than typifying the generic “retarded” person with a series of physical conditions that I read about in those books, she was just another one of my children.
I developed a new philosophy: Life does not have to be perfect to be wonderful. Another hurdle for me was the high stock society puts on physical and mental acuity. Our Facebook and Instagram accounts are lined with snapshots of perfect families, dazzling success stories and enviable travel adventures. Contrary to that, the books I read about Down syndrome listed all of the potential problems. I presumed my own social media accounts would forever remain bereft of happy tales.
All people with Down syndrome will have different symptoms manifest due to the extra chromosome, but much of the information given to parents at the outset can leave them with the impression that their child will have every symptom! And that life would not be worth living. This mindset is patently wrong.
Caila came with physical and cognitive challenges, but she arrived with an already developed empathetic soul, something that is under-appreciated in our world. When she was just two, she noticed another young girl her age at the playground who was not yet walking. It turns out that girl had cerebral palsy and was apprehensive to play with the other kids. Caila walked over to her, held her hand and – with a hug – coaxed her to join in with the other kids.
Caila taught me it is okay to take it slower, appreciate life, to love unconditionally.
In fact, Caila’s gift to me is the different lens I now have to view the world. She became my own tikkun, my correction. Before I had Caila, I lived a fast-paced, high-stress life. I didn't stop to take a look at who or what was around me. Caila taught me it is okay to take it slower, appreciate life, to love unconditionally.
Having Caila has also changed my perspective of what I actually consider a challenge. I realized that while chatting with my grandmother in South Africa. She asked me about Caila and I shared some cute stories, the usual grandparent fodder. She enjoyed it, yet at the end she commented that even though Caila is cute now, I will need to look after her for the rest of my life. “What can you do when God gives you challenges,” she sighed.
Her voice had the resigned tone of: “The poor Samuels, their lives are full of tragedy.” My grandmother had two grandchildren and a great-granddaughter with disabilities. I understand her worldview is rather pessimistic, but I do not consider raising Caila a burden. Many people resign themselves to the fact that they have a child with disabilities. We decided to reframe our world with a proactive approach.
One inspiring and thought-provoking movie that I saw confirmed our approach and our instincts of inclusion and treating your child as “normal.” Yo, Tambien (Me, Too), is about a young man with Down syndrome who graduated from university and landed a regular job. He fell in love with a coworker and the movie was about their relationship and its challenges.
The heart-wrenching theme, for me, however, was the question, “What is normal?” In the movie the son asks the mother “Why did you want me to be normal?” She tells him – in my words – “I had no choice but to allow you to reach your potential.”
That is exactly how I feel about Caila. It is why we invest so much in her, at a cost to our own time, money and, sometimes, sanity.
But I still struggle with all these questions. We strive to help our children be “normal,” but is this fair to the child? And what is normal anyway? Is it fair to put Caila through so many hours of therapy? Should I also be investing this much in my typical children?
It is an exhausting mental and emotional process to revisit these questions on a regular basis. Going to Holland has been much harder than going to Italy would have been. But since that’s where we landed, we are committed to make the most of it.
Excerpted from Jodi Samuel's just-published book "Chutzpah, Wisdom and Wine: The Journey of an Unstoppable Woman,” Jodi’s mission is to change the world, one small, unique step at a time. As an entrepreneur, international speaker, special needs advocate and super mom, on any given day you may find Jodi starting a new business, organizing a community event or conducting an interview with the Wall Street Journal while riding a camel in Morocco. This moving story of personal transformation makes her memoir an inspiring and valuable read for anyone who feels they are still reaching for their best self.