“The ideals which have lighted my way, and time after time have given me new courage to face life cheerfully have been kindness, beauty, and truth” ~ Albert Einstein
So you might be asking yourself, what does Albert Enstein have to do with Dory from “Finding Nemo” or rather where the heck is she going with this post? I know it seems a bit obtuse, but hang in here with me and I will explain. Have you ever looked at the same thing everyday and suddenly one day when you wake up you look at that same thing completely different? That happened to me on Saturday when I looked over, saw this generally unassuming item and felt courage creep over me like a tiny ocean wave as the tide comes in on the sand. What was the thing I saw in such a different light than I have everyday for the past 16 months…guess….ok just kidding, (how annoying is that when people try to get you to guess something about which you can possibly have no idea but they actually make you guess!), but I digress and I won’t do this to you, it was a box of baby wipes. For those that have little kids or those that have had or been exposed to young children, you are more than familiar with these clear white boxes that often have licensed animated images on them and are filled with wet wipes for diaper changes and other necessary cleansing rituals. Whether it’s “Toy Story,” “A Princess” or, as in our case, “Finding Nemo,” you stare at these images day in and day out and occasionally wonder what they have to do with changing diapers (fast forward to 3 years old when children who have never watched television or movies ask for the Nemo or Cinderella Princess backpack, then you get it, genius!). For us, the box with Nemo stays in our bedroom where the 4 of us, plus Max the toddler cat, congregate every morning for morning bottles, baths and diaper changes ( Max usually darts early once he realizes for the 400th day in a row what is happening. This is why I call him the toddler cat, developmentally he never progresses beyond a Toddler and pushes the same boundaries everyday, like scratching the furniture, etc. but he does seem to remember he hates the bath and diaper changing part:)). Often, when we are trying distract Q we will ask him, where is Nemo? He now points to the adorable orange, black and white fish with an enthusiastic index finger, but outside of this quizz tactic I never paid too much attention to the box, until Saturday morning. This time however, it wasn’t Nemo that became the celebrity to me, it was Dory his endearingly forgetful fish partner-in-crime in the film, who is voiced by Ellen Degeneres. You see, on Thursday, my friend T had posted a comment on my FB page, based on my Holland post, which included Dory’s famous quote from “Finding Nemo”, “Keep Swimming, Keep Swimming” my friend. We had no idea, how Dory’s famous voice would come to life for mynewfavoriteday.com the very next day, Friday.
I call it a fated day for “mynewfavoriteday,” and since we all know I believe in fate and enjoy putting the pieces of the puzzle together, you will have to trust me on this one. I won’t spell out the entire story, but will only say that fate helped my little blog on Friday when Ellen Degeneres retweeted my “Finding Strength in Holland, when I wanted to go to Italy” post to her over 4 mm followers which combined with my newly found techniques in tweeting resulted in 8,000 views of my blog in one day (I mean seriously, for those of you not familiar with this space, this is unprecedented!). So while the numbers were exciting, I was actually more happy that over 8,000 people have read the Holland essay and now those 8,000 people will hopefully think a little bit differently about a child with special needs and equally as important about the family loving that child. As I have grown in my learning of what qualifies as a special needs child, there has been a specific area of interest for me that is often part of many other conditions called Sensory Processing Disorder or SPD. I acknowledge this not just because E has been diagnosed, and we live with all that it brings on a daily basis, but because so many other children have some version of SPD but have been written off or qualified by various systems (education, medical, psychiatric) as being difficult, uncooperative or not keeping up . SPD ranges from very acute to mild and so my point is that next time you see a child at your child’s school or in a store who seems to be having issues, please don’t judge them or their parents as you don’t know how their book is written and what you see on the cover may be very different from what’s on the inside, but they just may not have the resources or the person who has helped them know it yet, or perhaps they are working through this issue on a daily basis. If you suspect that your child might have SPD, I have provided a link to a blogger network in the blog roll that may be a good resource as well as advising recommended reading materials on raising a child with SPD. Of course, every child is perfectly different and you must trust your instincts on if you think there may be more to the story when something is happening in your family.
So, while that context of Holland, was my “aha moment,”what also struck me about the poem was that there are parallels not just from having a child with special needs, but with so many scenarios that happen in life. In our case, like so many, we have a double whammy of prematurity and special needs, but others of you have faced equally challenging situations, whether it be acknowledgement of severe depression or other similar mental conditions, death of a parent, sibling, close family member, close friend or someone that you never imagined walking through life without. Others have been themselves or had family and friends diagnosed with illnesses or conditions, terminal or otherwise, gone through a difficult divorce, abusive relationships, or have you yourself, or had family members that have been addicts to any number of things. Some people’s “Holland’s” you can never know unless you have been (and even then it’s important to remember that everyone’s situation is unique), but what we can all relate to is the courage it takes to walk off the plane, so to speak, once you realize you have arrived.
Many people start with denial of course and then anger, frustration, sadness, and ultimately fear. The next step in my opinion is what takes great courage. Courage is a term often reserved for situations of magnitude, like the great service men and women who protect our nation, or the police, fire and medical personnel who risk their lives to save others and keep us safe. But, courage also comes in very small and powerful packages, for it is courage that propels us to take a step that is scary because we are fearful of where it might lead, or of the path that we might find as we head to where we desire to go. Courage happens in moments. For me, Dory was my moment. As I have mentioned, we have been exceptionally cautionary with E as it relates to her medical condition and even more so this past 6 months as this season’s influenza and RSV were expected to be particularly bad. Any sickness for us could result in a setback that could keep her on the oxygen for an extended period of time, and so we have been very protective and also kept her, and them, quite isolated. For anyone that has kids, once one is sick so is everyone in the family and so in light of this, E & Q don’t go out much to any place other than Doctor’s offices (which is quite frequent) and walks in the neighborhood. They have never been to the park, inside a grocery store, and have been only out to eat at a restaurant 5 times in the 14 months they have both been home (to be fair we did take them to Laguna last summer for a “trip” (we have decided trips with kids are no longer called vacations) and all of us got sick including E. I am sure to some this self-imposed isolation sounds crazy and over the top, but again, you cannot understand unless you have been here with us day after day.
So, Saturday morning as I sat on the bed getting the babies ready (KSP was at his fabulous work retreat in Ojai, umm yes, I was jealous) and we were playing when our good friend Uncle B called and casually threw out that he knew KSP was away but they were having some friends come down to Manhattan Beach, and one of the couples who we had actually met in a multiples class before the babies were born, were bringing their twin boys. I could tell when he asked that he never in a million years thought I would say yes. But what he didn’t know is that I was staring at a box of baby wipes. I told him I would call him back.
It was a beautiful day outside and already you could tell it would be quite warm. Additionally, I had Sara Barellis playing on my iPhone (yes, Q was dancing) and we were happily singing and going through our routine. As I stared at Dory and thought about the kindness and good fortune I had experienced from the Ellen crew the day before, I decided to take the babies to the beach! Alone, yes. To the beach where there would be other kids and people, yes. To the beach where there was sand that could get all over and potentially into E’s oxygen tube, yes. The beach. They had never seen or touched the sand or seen the waves crash to shore, so I called Uncle B back and said “we are coming”. I was excited and a little scared all at the same time. In full disclosure, I had never even collapsed our double jogging stroller to put it in the car, I still use the Snap & Go (this is their touring vehicle), because the babies are by definition city mice. They only go off-roading from the house. But not anymore.
So after all the preparation it takes to prepare fair-skinned Irish twins to go to the beach for the day when one is on solid food and one is still drinking bottles that have to be thickened (or else she will aspirate), I figured out how to get the Double Stroller into the car and subsequently after much grunting and perspiring how to collapse it to fit (it was dicey there for a bit). We were on our way.
To say it was an amazing day would not describe the joy I felt when Q laughed hysterically as he dug his hands in the sand and tried to eat it. And his delight and giggles as the waves rolled in and over his feet and legs. Uncle B held Q and dipped him as the waves continued and he could not get enough. Baby E and I stood in the water (not her just me) and she smiled her giant smile as she knew this was special. No fear.
For me, this moment, this day took great courage. Many people have very thoughtfully emailed me and said they think I am courageous in my journey. I respectfully do not think I am brave or courageous as this is what I do because this is what I have to do and if my babies need something I am their mommy, and like so many, I do what I have to do. But the moments I am scared and I decide to take a step to get an answer I may not want to hear, or to make a decision regarding care that I am not sure how it will turn out or going to the beach or where there will be a lot of people, I feel the courage at those moments because I must, I need it. It is the kindness of our family and friends and those that have joined our journey that give me new courage. It is the beauty in the purity and faith of my children that give me new courage and it is the truth that we can handle anything that comes our way as long as we remember the first ideal which we are so fortunate to know which is the kindness of people like you, oh that, and a wipes box with a sweet, forgetful fish named Dory who gave her friend Nemo great courage and me too. And that my friends, is how Dory and Albert Einstein make sense.
I wish you all a moment of courage for any situations you may need it and let the kindness of others help you on your way. Don’t be afraid be share that you need the push, that, in and of itself, can be the first step off the plane.
4 thoughts on “Courage to take a fearful step can come from unlikely places, like a fish named Dory.”
That is the key, in my opinion, to this journey with special babes – look fear in the eye and step forward anyway. Loving your child enough, shouldering the full extent of the parents job, to do what is best for them. Not hiding in fear of what society will say if your child looks or acts “like a retard.” Not writing off their future just because they will never fit into society’s idea of normal.
Now that is one term/attitude I truly hate. “Normal” people who are so afraid that they aren’t really totally normal themselves pushing their fear of difference off on another person who can’t help their condition. “Retard” is one I’ve never heard with my son, though I have heard it used on others. “Afflicted” is the one an elderly friend used when my son was small. She didn’t mean anything by it but it caught me wrong so she never got to see him again.
I’m so glad you got to enjoy a wonderful day at the beach! It really is scary when you are first coming out of “isolation” mode. It was a long time ago for us, but I still remember looking really hard at anyone who dared come close to make sure they passed the health check. It’s a good thing that sanitizing gel wasn’t around yet then, I’d probably have made people shower in it!
Hoping more wonderful days in the sun are heading your way,
Thanks so much for sharing Faith. You are clearly so very strong and your son is so lucky to have you as his mom, advocate and most fierce protector. As you point out and I agree, now more that ever, “normal” is a very subjective state and noone really gets the right to judge what that is or means. I appreciate your thoughts and your sharing, I hope you will do so again as it seems many people could benefit from your insights and experience. mnfd:)
Thanks, I’ll more than likely be back. I seem to be developing a liking for expressing my opinion! In case you’re wondering, I’m the author of the Brain Balance blog you have a link to. I had to ask the friend who suggested it what a blog was! I’ve discovered I like doing it.
Have a great evening!
Excellent. Yes, I know it’s you and I am so delighted that you are here and I have seen that a few people have clicked through to your blog so hopefully others are finding what you are doing helpful as well, it seems your friend was right! You too.