It Is Fair

IMG_3144I’ll start by saying we had an unforgettable day together.

I’ll continue by remarking the show was nothing short of magical.

And as much as I wish it were not true, before I go on I have to admit that sometimes a person’s single comment does have the power to ruin a day or an hour or an experience for me.

It didn’t yesterday, but a single sentence by a parking lot attendant has been sitting with me for almost the last 24 hours.  And that is usually my first clue it’s time to write.

Cavalia-Odysseo is a feast for the senses; and for a young boy who has not only been riding horses since he was three but thrives on sensory stimulation, there really was no other place else Edgar could have (I might even argue should have) been yesterday afternoon.  On the recommendation of Edgar’s horseback-riding instructor, who knows Edgar just as well as she knows her four-legged companions, we were, at times this week, out of our minds with anticipation.   When I told Edgar we were going to add the VIP pass so he could go to the stables and see the horses after the show, he pretended to faint.  When you have a child with epilepsy, this, of course, does not generally go over well; but once the split-second of terror passed and I saw he was okay, I understood the depths of his excitement.

The show is, understandably, not cheap.  When you think about the artistry involved, not to mention the deserved care of the equine performers, the pricetag makes sense, perfect sense.  But when it was time to purchase the tickets, reason needed to prevail.  Paying for a family of five to go was prohibitively expensive.  And since Edgar is the horseback-rider in the family, he got the ticket.

Now lest you think Edgar’s brothers sat home and twiddled their thumbs and bemoaned their fate while their brother was having the time of his life, they weren’t.  They were at the nearby Boston Children Museum having the time of their lives.  My husband dropped Edgar and me off at the show and headed to lunch and an afternoon of kid utopia.

However, as we pulled into the parking lot and told the attendant we were getting dropped off, he assumed it was me with all the children.  I told him it wasn’t–just one of them.  He said, “Aww, that’s not fair.”  His comment did not come across as particularly judgmental, but I felt the need to let him know that Edgar’s brothers were in for a good day at the Boston Children’s Museum.  Realizing he probably shouldn’t have said a thing, he quickly joked, “I wish I were going to the Boston Children’s Museum today.”

And that was that.  Edgar and I went in to the VIP tent as the other three-fifths of my family drove off.  We had a great day; they had a great day.  And that should be the end of the story.

But of course it’s not.  Because the attendant’s use of the word “fair” has taken up uncomfortable residence in my mind.

The attendant didn’t have any way of knowing there have been plenty of times Edgar’s brothers have had privileges when he has not.  He couldn’t tell that Edgar has epilepsy and that the therapeutic benefits he has experienced being around horses are beyond comprehension.  Perhaps he did not think that even when you do shell out money for Cavalia-Odysseo, there are still only so many dollars in the bank account, and that sometimes families need to make choices.

But perhaps the most salient point in all of this is shrouded in nuance, residing in the attendant’s use of the word fair.

It was–at least for that moment–his contention that all children having the same experience would be fair and that when only one of them has a particular opportunity it’s not.  To him, it was black and white.  Gray need not apply.

For me, though, “fair” is not an either/or concept; and it actually strikes me as dangerous to term and stringently categorize everything in life as either fair or unfair. A continuum, especially since human beings are involved, must exist.  In my personal and professional worlds, fair is not everyone getting the same thing; fair is everyone getting what they need.  When fair is looked at in this manner, balance is achieved–which, in truth, is the ultimate goal if not manifestation of fair as a concept.

So, to the attendant yesterday, it actually was quite fair that only one of my sons saw yesterday’s show.  It is also fair that only the two sons who are willing to practice violin get the accompanying (not to mention expensive) music lessons, that the oldest of three boys tends to get all the new clothes, that the one who needs to gain substantial weight gets an extra scoop of ice cream, that the youngest’s consequences are not as lengthy as his brothers’ for the same infraction.

Moving to gray requires critical thought and substantial effort; but the dividends, I think, will be worth it.  And that strikes me as very fair.

Nothing Special

Is your son special needs?

This was a question posed to me this week about Edgar—who, just like your son or your neighbor’s son or your grandson, is most assuredly special.

IMG_2923However, Edgar has epilepsy and ADHD, so the question had more to do with whether or not our son was the recipient of special education services than his overall uniqueness or individuality.

As an English teacher, though, and a mother who is “the parent of a child with special needs,” the word “special” has been on my mind since this person’s well-meaning question.

Type “special” into your thesaurus or thumb through the “s’s” of your old paper edition and you will see synonyms such as “singular,” “unusual,” “different,” and “separate.”

Think about it in other arenas, such as a special photograph or memento or a special set of dishes you inherited from your grandparents, and you are left with connotations that hover around notions of fragility or breakability—that a person with “special needs” needs “special care,” needs to be handled with kid gloves lest they crumble.

And fragility and breakability are not concepts I want associated with my son.

Yes, my son has epilepsy and he has ADHD.  Accommodations in his educational program need to be in place not to mention on the home front—accommodations that help to even the playing field for him, that will allow him to be successful and to achieve the same standards as his peers, as those who get to traipse through life without the burden of labels.

But Edgar is strong; he is resilient.  He is wise and has been through more in his short eight years than I have in my four-plus decades.   And despite his particular set of necessary accommodations it is important that the world not see him as “unusual” or “separate.”  His is among us and one of us.

The intentions of the phrase “special needs,” I believe, are pure; but in reality, and at least for my son, they ring as demeaning, endeavoring to keep him separate, to have him viewed as different and delicate.

So, no, my son is not “special needs” any more than anyone else.  The needs he has as he navigates the planet are special and unique to him just as the needs you have as you navigate the planet are special and unique to you.  Expect the same from him as you would from yourself while remembering the burden he carries that you do not.  Offer accommodations that are empowering and appropriate.

Then drop all the labels and just call him Edgar.

To Alice

IMG_2860By August Farias, age 4

She makes my heart beep;

She makes my soul beep.

She looks like my twin–same as me.

Brown hair.  Brown eyes.

I will make her a pink castle

And a pink volcano.

She talks to me.

She sounds different and has a sweet voice.

She has a beautiful coat.

We have beeping hearts together.

Necessity Is the Mother of Reinvention

“The best way to find yourself, is to lose yourself in the service of others.”  ~Mohandas Gandhi

I’ve known this for some time, could always articulate if you had asked–perhaps not as elegantly as Gandhi but an iteration of it to be sure.

But when you’re in the throes of difficulties, especially difficulties related to a loved one’s health, it is oh-so-easy to forget.

When our now-eight-year-old son Edgar was diagnosed with epilepsy nearly two years ago, my life’s focus pivoted and rested squarely on him and getting him to a point where he could, if it were possible, live seizure-free.  My focus on serving others was, embarrassingly, not even on the back burner.  It was farther away than that, much farther.

I wish I had remembered Gandhi’s words if not for the good they would have inspired me to do for others but for the ultimate good they would have done for me.  But I didn’t.  I could think only of my son.

Enter The Matty Fund, Rhode Island’s only epilepsy resource center.  Led by Richard and Debra Siravo, who lost their beautiful son Matty to epilepsy ten years ago, I stood in awe of what these two heroes among us were able to accomplish in the wake of such profound tragedy, not realizing that I, too, had the potential to make a difference.

Never ones to rest on their laurels, they sought last spring to expand their Discovering My Epilepsy Support Groups throughout Rhode Island and wanted to include Newport County, my particular stomping ground to be exact.

Photo Credit: Newport Daily News and Dave Hansen

Photo Credit: Newport Daily News and Dave Hansen

This Friday our first support group for families affected by epilepsy will be held.  It will be facilitated by Bethany Gilpin, mother to, coincidentally, an eight-year-old boy with epilepsy, and me.

Me.

Me, the mother of a child who still fears for her son’s safety, who still, whenever an ambulance goes by wonders if it’s for her son, who is still negotiating medications and trips to the neurologist, a mother who didn’t realize she had something to offer to others because she is still exhaustedly and exhaustively climbing this hill.

I think if you had asked me two years ago if I would have been interested in facilitating a support group for families living with epilepsy, I would have thought about it, understood the benefit of it, but would have concluded it would be best to wait until Edgar’s epilepsy was no longer the visceral daily factor it still is–once he was medication-free, no longer under the regular care of a pediatric neurologist, once he had “outgrown it,” once, to paraphrase Gandhi, I had “found myself.”

But when your child has epilepsy, you can’t sit around waiting to “find yourself.”  After your child’s first seizure, you realize how quickly and unexpectedly life can change; so, rather than waiting to find yourself, I have learned these last few weeks, the best course of action is to keep reinventing yourself and pushing yourself to depths you didn’t know you possessed.

The Siravos do–and in word and deed (and sometimes with a gentle nudge) inspire others to do so as well.  Thank you, Bethany, for joining me on this phase of my journey; and thank you, Richard and Deb, for knowing so, so much . . .

An Idea Man

Today was scheduled to be a visit with August’s birthmother.

These happen four times a year; and to say August is at an age where he not only understands the purpose of the visits but looks very much forward to them is an understatement.  Tell him we’re going to see his birthmother and he beams.  His growing four-year-old feet do a little tap, and his upper body wiggles in a way that is nothing short of infectious.

His comfort with all of this, his doubtless affection for her . . . all of this makes me so happy because it so obviously makes him happy.

So when she can’t make it due to work or other family obligations, he is disappointed; I am disappointed.  And, I suspect, he is also sad.  And it’s not just his parents who know this but also his brothers, who do not share the same opportunity for contact with their birth families.

IMG_2872When nine-year-old Oscar overheard my telling August that his birthmother would not be able to meet today, he pulled me aside.

“Why can’t she make it, Mom?”

I explained she had to work, that this was a new job and she wasn’t in a position to ask for time off or to say what days she could and could not work.

In my mind I was already looking ahead to the next scheduled visit, figuring I would focus on what we have to look forward to rather than what we had lost.

Then Oscar said, “Why don’t you see if you can bring August in to her work so he can at least see her for a few minutes?”

I looked at him, flabbergasted and amazed at the depths of his magnanimity not to mention problem-solving skills.

I explained that I didn’t know where she was working, whether it would be appropriate or not to bring him in, that employers often frown on employees having visitors.  But I quickly added it would be worth finding out . . .

And though it appears it probably won’t work out, I learned something about my oldest son–something I think I already knew but now can see unequivocally:  Though the chances of Oscar having the same connection with his birth family as August are incredibly slim and, more accurately, probably nonexistent, he does not harbor any resentment.  At nine years old he is not jealous, doesn’t want anything but to encourage his brother’s relationship, to see his brother happy.

With loyalty and love like that by his side, I suspect August will be able to weather any disappointment.  And, quite frankly, so will I.

[Dear Readers:  If you are on Facebook and wouldn’t mind LIKING My Three Sons on Facebook, I would be most appreciative.  Here is the link to the page:  https://www.facebook.com/pages/My-Three-Sons/156083127814187  Thank you so much for reading!]

The Most Important Ingredient

IMG_3055His night is Tuesday, his brother Edgar’s is Wednesday, and August has Thursdays.

Now that school is back and session and routine is de rigueur, the boys each have their own night to cook–which means meal-planning on Saturdays, shopping on Sundays, setting the table, preparing the meal, and cleaning up–all with supervision, of course, commensurate to their respective ages and abilities.

There are so many good reasons to do this, so many benefits–certainly enhancing their collective understanding of what goes into meal-preparation, creating more opportunities to talk (about food, yes, but about everything else, too), and sneaking in a few chemistry and math lessons along the way.

Oscar sat back tonight and watched us all eat what he had made, the dishcloth draped jauntily over his right shoulder, his eyes moving from one ingesting family member to the next, pride written all over his face.  He waxed poetically about drizzling olive oil on the crusts, about putting just enough and not too much cheese on each pizza, about making sure everyone had everything they needed.  Listening to him lecture his four-year-old brother about how hard he worked on the meal and how much he wanted him to eat it all up was nothing short of perfection.

But perhaps the best reason to cook with children, the best reason I want to cook with my children was summed up by Edgar tonight at the table as he ate his brother’s homemade (and, I might add, incredibly delicious) pizza.

Edgar ate his dinner tonight with unadulterated gusto, and in between enthusiastic bites turned to his brother, whom he called “Chef,” and said, “You cooked good food for me.  I just love you.”  He then got up, kissed Oscar on the head, and sat back down.

The most important ingredient in any dish is love . . . isn’t that what they say?