Laughing Until I Cry

In the last few years my ability to keep up with “stuff” has diminished. I lose keys, reading glasses, my purse, my shoes, my phone, my train of thought…etc.  If you’re in the same season you know what I’m talking about.  This misplacing of things and thoughts has increased over the last decade, but there is something else I have lost over and over for years now. My perspective.

I like to think that I’ve improved, but even a little loss of perspective goes a long way. I’m pretty good with the overarching perspective of what’s important. Except for all the times I’m not.

Hindsight being what it is, humbling and excruciating, I can see that most of the time my loss of clear thinking with its resulting stupid actions comes from some event triggering a fear of some kind. Afterwards I’m left thinking, “WHAT was I thinking?!! Would somebody please hit the do over button?!”

One of my biggest fears in parenting Nani has been the arrival of the day when I can’t care for her. When she was a baby and we received the first of several diagnosis with very poor prognosis, that some day loomed in my mind like a black hole. She would forever be a child, but I could not forever be her parent.

At first you are just considering the fact that you will most likely not outlive your child. But when your child has behaviors that threaten your ability to take care of her and put her at risk of institutionalization then those behaviors become your very worst enemy, your very worst fear.

Behaviors related to the diagnosis of autism vary greatly, some quirky and endearing, some disgusting, some that break your heart and others that scare you. Parents and families in the autism club love sharing the quirky, endearing ones. (Honestly, we also love sharing the reactions of the uninitiated to those quirky behaviors.)

There are a few things about Nani’s behaviors that you can count on.

• They seem to come out of the blue.
•  They stay a long time.
• They make sense to Nani
•  The last one makes them hard to modify or extinct.
• New behaviors will have you chasing your tail in no time.

I spoke to a group of teachers last month at an in-service focused on building a cooperative parent and teacher relationship. The teachers were all teachers of students with autism. The facilitator wanted me to share from a parent’s point of view what it’s like to be the parent, what you’re feeling, what you’re dealing with, and what you might be thinking.

I wanted to tell them what parents are thinking is, “what liquor store delivers??”.

But I didn’t. Instead I told them about a day when I lost perspective and why.

One July afternoon Nani’s teacher called to say that she was refusing to wear her shorts, and that she could not be put on the bus without them. I tell him I will be there to pick her up. Driving to her school, I am wondering where this behavior came from. I am determined to have her respond to me and co-operate. I need her to co-operate. I am confident (or delusional!) she will, and terrified she won’t.

Walking into the classroom, I see her standing in the corner by the back door, her back to the wall, her eyes wide and wild. Her expression and posture tells me she believes this to be a life and death struggle. She looks tall and gangly wearing her T-shirt, diaper and high-top tennis shoes. After 18 years the disbelief resurfaces one more time. I stare at her for a moment somehow shocked that this is my child standing there. I just can’t reconcile the young woman I’m seeing with the little girl I used to hold on my lap. I can’t understand how we got here. Panic and anger drive a conversation in my head.

(FYI-Anger insisted on being in capital letters, panic grudgingly settled for italics.)

Please don’t let this be the new obsession.

I WILL NOT LET THIS BE THE NEW OBSESSION.

I don’t want her to be a wild woman refusing to wear clothes. 

I WILL MAKE HER WEAR HER SHORTS.

Loneliness washes over me.

There is only me to deal with this right now, to get her home, to calm her.

NONE OF MY FRIENDS HAVE TO DEAL WITH THIS CRAP!

How can this be my daughter? How did she get so far away from me? Come back Nani!

I WANT HER  TO STRAIGHTEN UP RIGHT NOW!

She is so out of control, so frightened.

FRANK’S OUT OF TOWN AGAIN!

Can I do this alone? Can I keep her and me safe?

I DO EVERYTHING ALONE!

Nani, what happened today? I wish you could tell me.

LORD, SHE SHOULD BE ABLE TO TELL ME!

She looks so scared.

JUST STOP THIS NANI!

I want you to feel safe.

I AM SO MAD AT YOU NANI!

Nani, you are breaking my heart.

I HAVE TO MAKE YOU STOP THIS!

I don’t know what to do.

Then foolishly, my fear drives my behavior. I am determined to keep her safe. She needs to wear her clothes so she can live in my world. So, I begin fighting with her about the shorts. On her good days Nani can be irrational by our standards. Today she is absolutely crazed with fear. We wrestle for some time. I won’t give in. I am not listening to my heart, only my fear. I get the shorts on her. She is crying. I have been rough, a bully. Walking with her down the hall towards the car, I  pass a staff member and say, “I won!” But that is not what I am feeling, its just a cover for the trauma I feel.

I turn and look at Nani. Her shorts are off! I give up.

I walk her out the door in her diaper. The staff looks at us sympathetically. I am mad that I have lost. I am scared that I have lost. I feel like I failed her so badly. Why didn’t I just comfort her? I knew she was terrified.

We go home. She is willing to put on another pair of shorts, identical but for the color. She goes outside and sits on her playscape for an hour. Calming herself, hand flapping and rocking, soft cries now and then. I wonder if she feels betrayed. She comes inside for a drink and I ache to hold her. She would never allow that. The most she would allow on a good day is a kiss on the cheek and quick squeeze of her shoulders. And it was not a good day. Exhausted, sad for both of us, I wonder where I go to turn in my mother’s license.

There was something my Dad would say when we did something dumb as kids. He’d say, “What were you thinking? I’ll tell you what you were thinking! You weren’t.”

He would have had it right that day.

Last year at this time I experienced some of the longest seconds of my life as I watched Nani slip and fall down our deck stairs. It was one of those horrifying slow motion moments. I can still hear the sound of her head hitting the exposed aggregate concrete pad below.

Nani has made an almost 100% recovery. The long-term damage is minimal all things considered. (Minimal if you don’t care if you get any sleep…her post concussive syndrome has resulted in even more frequent “nocturnal awakenings”). But seriously, she is mostly back to her old self and I am delighted and so very grateful to God.

Emergency situations are surreal for everyone, but autism can make the experience take on the feeling of a Saturday Night Live skit. It’s not just an emergency, it’s an emergency involving a person with some very unusual behaviors and quirks, with the need for some very unusual accommodations for those quirks.

The whole event started with Nani swinging outside and it beginning to rain. (Remember rain?)  I went out to walk her inside. Holding her hand and leading her up the stairs, she drops one of the many small items she carries at all times. This odd assortment of things are as precious as fingers to Nani, dropping one elicits an immediate search and recovery response from her. She pulls her hand away and turns quickly, the stairs are wet and slippery, before I can react she is slipping and tumbling down the stairs. Horrified by the sight, I am also very aware that autism is about to make this a very unorthodox  and more difficult emergency.

It’s quickly clear that she needs transport. EMS want to know whether I think she’ll get on a gurney and go into the ambulance. (I refrain from looking around and saying, “Oh, I didn’t realize you brought the national guard with you!) Instead, I explain that due to Nani’s  high anxiety level regarding medical care, all her exams take place under general anesthesia, and an anesthesia team sedates her in the parking lot her just to get her into the hospital. So no… she is not going to get on a gurney and ride in the ambulance without major sedation, altered state or not.

Once I’m inside I realize it was a REALLY good idea. I had been wearing a light weight WHITE linen shirt and pants, nude bra and panties. But thanks to the rain, NOW I am wearing a very sexy number which, except for all the blood camouflage pattern that Nani provided me, looks like I might have just come from a wet t-shirt contest. This I feared could lead them to question my understanding of reality.

It’s funny the things you can learn during times of crisis.

I’m a sleep-walker and talker. Always have been, and my guess would be that I always will be. I’m sure my family hopes that it continues as it has provided SO much entertainment. I’ll share some of the highlights.

As a child my parents would find me perched on the side of the tub like a bird. Sound asleep. Or I would get out of bed and go into the den and talk nonsense to my parents.

As a teenager, I worked retail in the mall, at night I “worked stock” in my closet. I would awake the next morning and find all my clothing hung up, facing the same direction and grouped according to type. I know… sounds like the fantasy of every teenager’s mother, but it’s true. My own daughters did not inherit this propensity for hanging up clothes nocturnally, or during the day for that matter. (Before their protests begin, I will say in their defense they are better as adults.) During that same period I awoke several times some nights to find myself standing up “working the floor”, waiting to help non-existent customers.

In college, I would bathe and wash my hair while asleep and wake up while I was blow drying or rolling my hair with hot curlers. It was a weird feeling. I knew that I had washed my hair but couldn’t remember doing so. I’d check the time and find that it was 2 or 3 am. After a while if my father heard the water running during the night he would come knock on the bathroom door to make sure I really intended to be in the bathtub. You know…awake, the way conscious people do it. And yes, it happened way more than once.

As a new mother I dreamed one night that I was running a zoo for exotic animals. Trouble was I thought my 6 week old baby was a turtle, albeit an exotic one. My husband found me rocking, but not feeding a screaming baby. In my dream, I had agreed to let someone else run my zoo for a day and had promised not to interfere. Thus my dilemma with that hungry, screaming turtle baby, how could I feed her when I had promised I would not? As I was explaining this to Frank, I woke up. For some reason he insisted on me handing him the baby and decided that perhaps he should get up one night a week so that I could get more rest. (Who was I to argue?)

My husband travelled often when our children were young. One night when he was gone I awoke thinking that someone from my household was missing. But who? I decided “Mom” was missing. That would be Mom, as in myself. I got up and opened my daughters’ bedroom door and began quizzing the girls about “Mom’s” whereabouts. Sitting up in bed they began asking each other, “What? What is she talking about? What does she mean?” That’s when I woke up, realized I wasn’t missing after all, said, “Never mind” and closed their bedroom door. I could hear them still talking to each other about what had just happened. They sounded confused and disoriented (go figure!), so I re-opened the door and reassured them by saying, “It’s OK! I forgot I’m the Mom. Go back to sleep.”

I have a way with children.

Several years ago I began taking Ambien for insomnia, perhaps my body fears sleeping, heaven knows I’ve given it enough reason. As you might guess, I now have my own natural bizarre behavior as well as some induced by my sleep aid. My family feels this just adds to the fun.

One night in my altered state I serenaded my husband with Glen Campbell’s hit, “I am a Lineman for the County”. He might have found that disconcerting, if he hadn’t found it so funny. My daughters know to ask if I’ve had my med if I start to not make sense in a late night phone call. But so far I’ve still remembered I’m the Mom.

I’d call that progress.

Of all the diagnoses Nani received the first few years of her life, her profound hearing loss was the hardest for me to accept.  Every moment I was not consciously focused on something else, I was pleading with God not to leave her in a silent world. Every moment. I am a tenacious woman.

The other diagnoses had not produced this desperation. The brain damage and seizure disorder had pierced me but the hearing loss crushed me. Everything I heard reminded me that she could not hear.  The wind in the trees, rain hitting the window, her sisters’ laughter were all filtered through that grief. Months passed, the pain did not.

I pleaded and pleaded with God. I purposed to pray differently, to pray thy will be done, to find more eloquent words to state my case, as though God was waiting for me to convince Him to see my request in a new light. I purposed to pray so that I could hear what He might want to tell me. I purposed to pray to lay my grief down. If awards were given for “most purposes” I would have definitely been a finalist. But I could not pray beyond my inner refrain of  “please don’t leave her in a silent world”, over and over and over.

One day while in the car with the girls, I was at it again, driving and pleading with God in my head. Quite out of the blue, Ashley, age 5 then, asks me, “Mama do you believe Jesus talks to Nani in her heart?” Suddenly it was such a holy moment. I had the sense I needed to answer more than yes, the sense that a confession of faith was required of me.

“Yes Ashley, I believe that Jesus speaks to Nani in her heart.”

Her reply-“that’s good, because Nani needs someone to talk to her that she can hear.”

My pleading stopped. My grief drained away, gone in an instant. Her world was not silent, she could hear the person she needed to hear. It was not what I had asked for, but it was enough. More than enough.

Years later I read a quote by Francis De Sales and it reminded me of that day,

“Never look ahead to the changes and challenges of this life in fear.  Instead, as they arise look at them with full assurance that God, whose you are, will deliver you out of them… So hold tightly to His loving hands and He will lead you safely through all things.  And when you cannot stand He will carry you in His arms…. Either He will shield you from suffering or He will give you unwavering strength that you may bear it. Be at peace, then, and set aside all anxious thoughts and worries”.

I’m not confident that I will get to a place of faith that allows me no fear, especially when it comes to my daughters. I do know that deliverance does not always come in the form of answered prayers. But it comes.

My birthday was this week, so I’ve been a bit introspective. I use the word “bit” because in this post menopausal ADD season, a bit is obviously all I can handle. My mental life inventory is going like this, “Hey, I was thinking about something important a second ago! What was that?”

As Meghan (at age 3) would say , “Oh no, I forgot to be member!”

For the young women who might read this, don’t laugh. You WILL be here some day!

Sometimes I don’t know why I bother reflecting on my past year. My conclusions and resolutions are always about the same 2 things.

Losing weight and being more patient.

As for the weight issue, I can relate to Erma Bombeck when she wrote, “Over the past 2 decades I’ve lost 789 pounds, I should be hanging from a charm bracelet.”

I have a few theories about my weight gain.

1. EVERY thing in my life causes it. Sleep deprivation, eating, stress, eating, my husband, eating, my children, eating, rocky road ice cream …you get the picture. (Just so you know-3 of these have been medical proven to cause weight gain)

2. No matter why you go to the doctor the answer is the same-“We see more of ____________  in people who are overweight.” I swear I could have an infected hang nail and that would be the answer.

3. It’s not my fault. Wait, that’s one of my delusions not theories.

My second resolution always involves my lack of patience. My huge lack of patience. I have some theories about that also, but like the ones about my weight gain, they are just excuses.

I want to be like Henri Nouwen, and not just because he was a thin person. Henri Nouwen lived the last decade of his life in a community called Daybreak which served severely disabled people. It would be more accurate to say that Daybreak was a place where people lived in community and some of those people had disabilities. Nouwen cared for a young man named Adam who had severe physical and cognitive disabilities. Phillip Yancey writes of a visit with Nouwen about his care of Adam.

“The time he spent caring for Adam had become an indispensable time of meditation.”

That what I want. I want my care for Nani to be an indispensable time of meditation. Sometimes it is, maybe I should say rarely, and I am refreshed, peaceful, quieted, overwhelmed by the privilege.

Nouwen talks about his time at Daybreak as the event of true love God placed before him. Nani is my event of true love. Her daily care acts as mirror that allows me to see into my heart. More often than not, I don’t like what I see there. Ugly impatience, resentment, selfishness, and entitlement to name a few.

But when I intentionally choose to serve her and serve her well, willing to be present in each moment of each mundane task, then I am aware that this life God has given me is full of a thousand daily graces. And it is well with my soul.

My Daddy died 3 years ago this month.

I miss him. So much. He was handsome to the day he died, and when he was younger he looked like Ricky Ricardo-tall, dark and handsome.  At age four, I thought I was going to marry him and was upset to learn that evidently my mother was not going to bow out gracefully after all. Rude!

Daddy was smart, self-taught and sharp as a tack. Nothing got by him. A man of few words, he would rather shoot his own foot before he tooted his own horn. If he said he was going to do something, you could count on it. He was the king of frugality, but quietly generous. He had a dry wit that kept us laughing, a black belt in mischievous aggravation, and as for his chili-it was a masterpiece.

My daddy could beat up your daddy.

My husband has put up with a lot of “my Daddy would have…” or “my Dad said…”. He puts up with it gracefully. One of the things I love most about Frank is that he never spoke a negative word about my father.

Frank’s a smart man, too.

Daddy wasn’t a teddy bear kind of dad, although his granddaughters did have him wrapped around their little fingers. But he was always there when you needed him.

I had a bad car accident while in college. Even in my dazed state, seeing him running across the intersection towards me, I remember wondering how he got there so fast.

On my wedding day, after the doors to the sanctuary were closed, it was just me and Daddy in the narthex of the church, waiting to go down the aisle. Standing there, my arm in his, he says, “Donna Gayle, if you’re not sure, just say the word and you and I will walk right out this door and not have to explain anything to anybody”. Those words a huge gift to me because I was terrified. He was giving me permission to forget about all the wedding preparations, money spent, and expectations of others. Permission to make my decision for the right reasons and pledging his unwavering support.

Almost a decade later, I found Nani in the middle of the night near death after an extended seizure. My mother came to watch our other girls. I rode in the ambulance, Frank followed in the car. Hearing the driver radio the hospital that we were coming in lights and sirens was surreal. I knew things could go either way and very quickly. The first time I left Nani’s ER bay and went to the waiting room, I saw my Dad and my brother. It was such a comfort. Taking breaks while the docs worked on her, I’d sit with him, his arm around my shoulder. We didn’t talk much. But sitting there next to him made me feel like I was going to be able to do whatever I needed to do that night, say good-bye to Nani or fight on for her.

I loved my Dad’s hands, even now when I think of him it’s the first thing I visualize. He had big, strong hands. God used those hands to teach me something I was going to need as an adult on days I refer to as “white water” days.

My family would visit a camp on the Comal River called Camp Warnecke. The main attraction there was riding a short stretch of rapids on inner tubes. Until we were old enough to manuever our own tubes my parents would take us down the rapids, usually one on one. But this particular day my father put my younger brother, Dwight, and me on separate tubes and was going to body surf behind us holding onto both tubes. I remember him telling me before we started down the rapids, “If you fall off,  just hold your breath, I’ll get Dwight, then I’ll get you.”

(Hey Dwight-he only got you first because you were such a baby…)

Guess what? Next thing I remember is flying off that tube, the current tumbling me along under water, delivering me to a slow eddy near the water’s edge. I was upright, still underwater, and slowly turning around and around. Looking up I could see the sun and sky through the water. I don’t remember fear,  just my Dad’s words in my head over and over, “Hold your breath, I’ll get Dwight, then I’ll get you.” Suddenly there it was- that huge hand plunging through the water. He had me.

I know this all must have happened in less than 30 seconds, but it was all in slow motion for me. It’s a very vivid memory- that hand coming through the water. A memory God brings to mind on white water days when my fears and emotions are tumbling me along and I’m overwhelmed, exhausted, or fearful and hopeless about what Nani’s future holds for her. My mind and spirit quiets and I wait because even though I’m still twirling in the eddy, I know HE’s coming.

My earthly Daddy taught me that.

That was my nickname as a child. When I was a kid I cried about everything, so much so my Mom gave me this nickname. Who knew I was in training?

Gradually I learned to not give into the sudden flow of tears so often and  began to believe that at the very least it was a bad habit and more likely a character flaw. After Nani’s diagnosis that presented a problem for me.

Tash was 2 1/2 when Nani was first diagnosed, she was a happy, precocious and quite possibly the most compliant child you ever met. You could have carried her by her feet when she was a baby and she would have laughed and cooed. (And yep, I thought it was due largely to my amazing parenting skills! I was young, I was stupid..I was humbled.)

The diagnosis felt like a 2 edged sword. Many parents have told me that after their child was diagnosed with a disability that it felt as though someone had handed them a different child. That’s how I felt. I mourned the loss of the baby I thought I had and I mourned the loss of normalcy, especially as it concerned Tash. Normalcy had been in short supply since Nani’s birth. She was not an easy baby. She didn’t like to be held. She was easily overstimulated, colicky. Not easily consoled. I wondered what the fall out would be for a 2 year old whose mother was brokenhearted and exhausted.

The strongest conviction I had was to be fully present, not pre-occupied by my grief, and do whatever I could to continue the childhood Ashley had known. And I was in rescue mode. I was going to do everything I could to help Nani or die trying. Besides reeling from the diagnosis I was on an accelerated home nursing course with new diagnostic terms, new drugs, side effects, therapies, lab values, multiple doctor visits and learning to give Nani daily injections. I was exhausted by the end of each day with no energy to process anything that I was feeling.

After a few weeks I began to wake in the middle of the night.  I would slip into a bath so that I wouldn’t wake Frank and cry for a couple of hours, and then go back to bed. I had a strong sense that God was waking me up to do my grief work, but I second guessed myself. I didn’t trust the need to release those tears. I thought I might be giving into something. Something that would rob me of the energy and strength I needed to get through my days. I asked the Lord to shut down the midnight crying jags or show me it was Him.

A few days later my new neighbor came to my door. We had only had a few brief conversations, we didn’t know much about each other. She did know about Nani’s diagnosis, but that’s about it. She stood in my entry that morning looking a bit awkward. She had a box in her hand and said,  “I don’t know what you’re going to think about this, but I’ve been praying for you and I feel like God told me I was supposed to get you something. Something you were going to need. I know it sounds weird, but maybe it will make sense to you.”

She handed me the box. It was a bath pillow.

I cried.

I’m pretty certain the Krispy Kreme folks think I have a problem. A big problem. A problem that might require a 12 step program. But it’s just a communication problem and  it all began with “mands”.

Mand is another word for request. Actually it means demand, but in the context of my daughter’s communication system it means request. After all who would want to go to elaborate lengths to teach their child to make demands!

My second daughter, who we call Nani, has very limited communication due to severe autism and being profoundly deaf and legally blind. She relies on an object symbol communication system which is fairly new for her. A critical part of learning to communicate is  learning that it works, and that different words or in Nani’s case, objects, mean different things. Another criteria for a person with autism it HAS to be rewarding. That’s where the mands come in. She makes a “mand” and we make sure she gets what she’s asked for. Repetition being the price of knowledge, the more mands the better. Gradually you fade out the granting every mand, but in the early phase of communication it’s crucial.

So what has this got to do with my alleged Krispy Kreme problem? That’s right, you guessed it- a Krispy Kreme donut is one of Nani’s  favorite mands. She hands me the symbol for this fried ring of sugar and fat and off we go. Several hundred times a day.

OK, maybe 4 times a day. But it feels like at least a hundred.

I know what I’m communicating to Nani, but what am I saying to the Krispy Kreme folks when I pull up to the drive-thru window and order just one chocolate iced with sprinkles?

Trouble is the donut makers can’t see that Nani is with me, she rides in the back of my SUV which has privacy glass. Sometimes Nani’s attendant take her on these donut mand runs. But it is my car they use.

I can just imagine the conversation inside when my voice comes over the speaker.

“Y’all, it’s the chocolate iced lady again!

Seriously, why doesn’t she just get a dozen? She’ll be back in a couple of hours anyway!

What do you think her cholestrol level is?

She always uses the drive thru, do you think she can even get through the door?

She needs to get help, man!

Dude, that’s her car! Now she’s got other people buying donuts for her. That’s just sad.

You think that’s sad, she was here at 6 am when we opened yesterday and back again close to midnight.”

Gotta go…evidently the donuts are “hot”.