denial

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Walking on Eggshells

My second child recently turned 20. It is quite a milestone, as we mark the occasion of parenting this very special, special needs young man. My husband and I marveled at two things:

  1. Our son’s awful genetic disease has spared his life thus far, and
  2. We haven’t killed each other and are still generally happily married.

It feels like another wedding anniversary for us. We were married almost three years when we had this son. Life changed drastically, in a much different way then when we had our first, typical child. It’s a wonder we got through those early years. The stress of a sick child, the unknown of what was wrong with him and then the grief of finding out about the life-threatening, chronic genetic disease that we had unknowingly given to him. Our different coping styles didn’t mesh at first – my husband was angry and I was in denial that this child’s illness would affect our lives as dramatically as it does. Our dream for a perfect family evaporated. There were many hospitalizations, doctor’s appointments, and a myriad of therapies.

In the midst of it all is a happy, sweet young man who loves us both unconditionally. He sees the good in everybody. He has no guile. On his birthday he proclaimed after opening his gifts at 7:30 am that “this is my best birthday ever.” While he does have a good memory, he lives in the moment and is content. He is not sullen or bored or unkind. He has a good sense of humor and is especially “pun-ny.” He loves his family and everyone in his world.

I walk through the days on eggshells however, never knowing when my son will feel unwell with one of the episodes which are the hallmark of his disease – Familial Dysautonomia. He feels nauseous and then starts to retch uncontrollably. Sometimes it is mild and sometimes it is severe. He needs medication to stop it, which makes him fall asleep for several hours so his body can reset. He can go months without an episode and I am lulled into a false sense of security that my life and our family’s days will unfold as I plan. And then it happens, usually with no warning. He will often fall into a cluster of episodes with no obvious pattern. From the moment I set eyes on him in the morning I am scanning for signs of a “crisis” as the events are called. If he is well, he is chipper and always asks, “How was your sleep?” My husband and I can sometimes tell he is “sick” before our son admits it, just by the look on his face. We must make him insane, constantly asking, “Are you okay?” He hates to disappoint us and ruin whatever the day’s plans are so he often denies it until we hear him retch or admits that his stomach hurts, which is the beginning of an episode.

If he emphatically says he feels “fine,” despite my doubts I drop him off at his volunteer job and keep my fingers crossed. I putter around, waiting for the call from him, lamenting silently that my life is put on hold. Sometimes he is right and sometimes I am. It doesn’t matter. There is no rhyme or reason. I rarely call his specialist for advice anymore as I am in the foxhole by myself. My husband is very supportive but when it comes to tweaking our son’s medications, it is a crap-shoot. I do my best to go with the flow but sometimes it is maddening.

I recently saw a friend who is about 20 years younger than me. Her eldest child was just diagnosed with autism at the age of 6 and naturally she was feeling distraught and overwhelmed. I explained that this is an especially difficult time as she has to grieve for the life she thought her child would have. “What about my life?” she asked.

What about her life, indeed. While I do my best not to let my disabled son consume my life and be my sole identity, my life rides the waves of his disease. It ebbs and flows with his health and happiness. Yes, this occurs with all children but it is more pronounced with a child who is so dependent on you for their daily functioning. It can be smothering and isolating, if you let it. I choose to be part of a large community that lifts me up when I feel down. When I step back and look at my life, I see mostly the good stuff. Savoring the positive things, no matter how small they might seem in the moment, is how I don’t let the bad times keep me down.

I am 55 years old. My mother died from cancer when she was 74. I am acutely aware of time and how the next 20 or 30 years could unfold. My goal is to get my son into a living situation that is not solely dependent on me and my husband and eventually on his siblings, depending on how long he lives. I experience gratitude and despair on a regular basis, but I strive to choose joy. I try to give my child and myself the best possible lives we can have.

If the eggs break, I prefer mine sunny side up.

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Cookies

 

cookies

My parents were married for fifty-four years until my mother’s death in 2013. It was a strong partnership and a loving marriage. I’m told that people who have good marriages are more likely to marry again as they’ve had such a positive experience with the institution.

So it’s not surprising that my father has a lady friend, and a very nice one at that. We recently had the pleasure of making her acquaintance. She too was married for a long time and was widowed around the same time as my father. I am pleased that my father has a companion, is not lonely, and continues to have an active, full life.

Intellectually, I am all in. Emotionally, however, it took me a little longer to get there.

A couple of months ago I was with friends who inquired after my father. They wondered if I had seen a picture of his lady friend and were surprised when I said I hadn’t, nor did I particularly want to. “Why not?” they wondered.

“If I see a picture, that means three things,” I answered.

a) this person actually exists

b) my mother is dead, and

c) my father has a girlfriend

“So, no, I don’t really need to see a picture. I’m good.”  My logic was sound and my denial fully intact. What was the harm in believing my parents were away on vacation?

Lo and behold, what happened a few days later? My father sent my siblings and I a picture of his friend. Funny how the universe works. God must have been gently nudging my emotions to catch up with my intellect, which of course they did. I’m fifty-one years old, not ten. While it’s weird to see my father with someone other than my mother, it’s good-weird. My sister called me after receiving the picture via email too.

“Did you see the picture?” she asked.

“Yeah, I saw it,” I said.

We agreed that this woman looked like a normal, nice person. My sister told me she got up from the computer, walked into her kitchen, and made a beeline to the counter where a plate of cookies sat that she had specifically not been eating all day. You know where this is going…she proceeded to eat the whole plate.

Emotional Eating 101 – your mom dies and your dad moves on with his life. How could cookies not make you feel a little better?

I have been hearing many stories from other people who have lost a parent and had similar experiences with a parent in a new relationship. One woman told me, “I’ll make you feel better – my father married my mother-in-law.” Wow, she wins the gold medal in the unusual second marriage category. Most everyone tells me how glad they are that their surviving parent has someone to share their life with. Those whose parents were never in another relationship lament that fact. I am thankful for my dad’s run of the mill widow-meets-widower story.

I am no longer in denial. I realize my father isn’t trying to find me another mom; he has simply found a companion for himself. Hard to believe, but it’s actually not about me. It’s a good life lesson – one that goes down easier with a big plate of cookies.

 

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“It’s Appropriate”

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Has this ever happened to you? One of your children is watching something on a screen that seems questionable to you. You ask if it is appropriate for them. They assure you that, yes, it is appropriate.

“Oh. Okay,” you say.

You know they say this because they want you to go away and leave them in peace. You want the same thing, so you choose to believe them because sometimes you don’t feel like taking the time to investigate if it’s truly appropriate. Sure – I can count on my child to know what’s appropriate and what’s not, can’t I? The kids and I would agree on certain things that are clearly not appropriate, such as highly sexual content or gory violence – they wouldn’t want to watch these things anyway (not yet, at least.) It’s all the other things (like bad language, mature themes, silly reality shows) where the line is not always so clear.

Sometimes things are inappropriate but in the opposite direction – not mature enough. Take for instance my 16-year-old son with special needs. He has a penchant for watching shows that some might say are too young for him. I used to tell him he is too old to watch these shows.

“But I like them,” he told me.

Sigh. He likes them. Who am I to force him to watch shows that he doesn’t really get or enjoy, just because they are more age appropriate? For me, there’s a fine line between expecting him to act his age and allowing him to be how God made him. Where is the perfect balance? I’m always looking for it.

My daughter recently reported that this brother was watching “Family Guy.” Oh good, my husband and I thought – that’s semi-appropriate for a teenage boy. Then she told us that it was really a cover for him to watch a children’s show on the computer – he too clearly understands the whole “It’s Appropriate” game. Too bad this cognitive ability doesn’t actually transfer to age-appropriate television for him, but oh well. He did participate in a recent “Simpsons”-fest with his cousins, keeping him somewhat in the adolescent TV loop.

My daughter chastised me for allowing her brother to watch “baby” shows.

“Really? Do I need a critique of my parenting from you?” I asked.

Let me just say that she loves “Dance Moms” and God-knows what other shows that some may say are inappropriate for an 11-year-old girl. It’s amusing to me that my youngest thinks she is the maven of appropriate material. When she was nine she picked the song “Mean” by Taylor Swift to sing in a recital. It’s a great song. We both thought the tune was catchy but neither of us paid much attention to the words. I just thought she was so adorable. As I sat there watching her, I realized the song is about an abusive relationship and my stomach dropped to my toes.

Maybe not my best call in this grey area we call parenting, but the world didn’t come to an end. The video of her singing still makes me smile to this day. Is that really so inappropriate?

 

 

 

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Bittersweet Sixteen

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My son with special needs turned sixteen last week. My father reminded me to say a prayer, expressing gratitude for having raised him to this point in time. I am thankful that he is happy, loved, that he walks and talks.

It is, however, bittersweet. Oddly enough, I am most sad that he is not on his way to driving a car – the highlight of turning sixteen for most teenagers in the United States. The ability to leave the house and your family and find your own way is liberating.  I still love to hop in my car and drive away sometimes. Except this time I’m running away from my children. Sweet separation. My eldest son is seventeen and he drives. His little sister once asked where her brother, the new driver, was.

“Out,” I answered.

“Why?” she asked.

“Because he can,” I told her.

I vividly recall my elation at getting my license and the incredible freedom I felt. I remember going “out” as often as I could, to that elusive place where parents can’t find you. Nowadays children can’t be as unavailable as they’d probably like, poor things, because of the homing devices that are their cell phones.

It makes me sad that my second son cannot go “out,” although he doesn’t seem to want to. He is not focused at all on the fact that he is not on the driving trajectory. In fact, he would probably be happy to stay “in” for the rest of his life. He’s happy surrounded by his family and his beloved video games. It’s tempting to let him stay in forever, to keep him safe and sound.

“Maybe he could try taking the driver’s ed course, to see if he could even pass?” I mused to my husband and other children.

They all dismissed the idea as ludicrous. He would be a danger to himself and others, they argued. His lack of attention to the world around him could have disastrous consequences. Are we selling him short? Am I crazy and deluded? Maybe a little.

It’s part of the ongoing see-saw of raising a differently-abled child. I am grateful for the things he is able to do but the grief for what he can’t do lurks in the background. His brothers are tall, strapping young men like their father. I encourage this son to consume as many calories as he can, so that maybe he can be as tall as his five-foot-four-inch mother. I cling to things I may have a touch of control over, to maintain an illusion of normalcy.

There is a popular essay which is given to many parents when they have a disabled child. It is called “Welcome to Holland.” The gist of it is that you were planning a trip to Italy and were shocked to find you arrived in Holland. Once getting over your disappointment at landing at the wrong destination, you look around and discover the beautiful things in Holland. It’s a lovely metaphor to try to make you feel better about the immense sadness and disappointment you feel when you have a less-than-perfect child.

It works for a while, perhaps getting you through the early years of crushing hardship and disbelief. I have a group of women friends who I met in a support group ten years ago, all who have disabled children. My “Special Mom” friends, I call them.

“Holland sucks,” we wholeheartedly agree.

But here we are. We strive to savor the sweet and tolerate the bittersweet.

So Happy Birthday to my young man. Who cares that driving’s not in your future? I’ll teach you how to ride the bus.

 

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I Don’t Wanna

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Several years back there was a scene on one of my favorite television shows, Will & Grace, where Grace asks Will, her best friend, to walk her down the aisle for her wedding.

“I don’t wanna,” he replied.

“You don’t wanna?” she asked, incredulously.

I have adopted this as one of my favorite mantras.

Most everybody has experienced this feeling of wanting to avoid something hard or painful, or just plain inconvenient.  Like most people, I’ve got lots of balls in the air that I’m juggling, and most days I keep those balls in the air. Occasionally they come crashing down.  When that happens, what I want to do most is simply stick my head in the sand.  Because of the excellent writers of a hit sitcom, I now have the words to apply to these feelings.

Sometimes it’s less serious situations when the “I Don’t Wanna” comes into play.  For instance, a social obligation, a work function, or a school activity…ring any bells?

Usually it’s the big matzah balls of life that trigger my I don’t wannas.  For instance, last summer the sleep-away camp doctor called about my daughter.

“Have you noticed a goiter on your daughter’s neck?” she asked.

Anyone who’s watched Seinfeld knows that I imagined a goiter the size of a second head. I hadn’t seen my child for three weeks, but I had never noticed a goiter before she left.  Time for a maternal gut-check—Did I not notice a goiter? What kind of mother could have missed a goiter?  Fortunately, her goiter was in reality very subtle and unnoticeable to the untrained eye.  It turned out she has Hashimoto’s Disease, an autoimmune disease that attacks the thyroid, is easily treatable and for which you see an endocrinologist. Seriously? This is my fourth kid and I have to deal with new and exotic illnesses? I really don’t wanna.

On a bigger scale, it seems that I have to begin contemplating how the rest of my disabled son’s high school career will play out.  I met with a “transition” counselor at his school recently.  She gave me a notebook with a lot of information and advice on applying for services with various agencies and scenarios of the different options available to my son.

First of all, the notebook made me chuckle. Through various projects and committees over the years, I have categorized people into “notebook” people or “folder” people.  Notebook people are extremely organized, with papers neatly arranged by tabs.  Folder people are those who have all of their papers shoved into a folder.  I fall into the latter category.  I think of myself as a relatively organized person and can put my hands on the papers I need – I’m just not motivated to put them into notebook form.

But I digress.

I don’t wanna think about the next few years of my son’s life. I want a typical fifteen-year-old with typical fifteen-year-old problems. The thought of applications, forms, evaluations, assessments, meetings and decision-making makes my chest tighten. I have put the notebook away for a while but I know I will open it one of these days and do the things I need to do.

I realize that “I Don’t Wanna” is essentially a manifestation of denial. I suspect it is a universal feeling that people use to cope with stressful situations. Denial often gets a bad rap, but I find it can be healthy in small doses.  A petulant child lives within me and sometimes pays me a visit in trying times.  Instead of crossing my arms and stomping my feet, I just enjoy a few quiet days of  “I don’t wanna” and my semi-ignorant bliss before doing what needs to be done.

You could try it sometime, if you wanna.