From the Parenting Files: Temporary Insanity

Last night was going to go smoothly. I had it planned. The kids would go to bed early, the Mr. and I would get an evening to chill, and we might even get to bed early ourselves. Because that little combo is the ultimate worn-out-parent trinity.

And we are worn out.

I was in and out of a work project when I decided I would get up and play mom for a few minutes. I scanned the room. When I realized the five thousand Legos strewn on the floor had not been cleaned up, I made the rather brilliant and time-saving decision to sweep paths to and from each bed to the door with my foot. They could clean in the morning.

It was 7:45, both boys were in the pajamas and in bed reading. I couldn’t believe it, but I was standing on the precipice of Friday night nirvana. Then it happened. I gave my child his anti-seizure meds like I do every single night, and after swallowing them, he said: “I think dad already gave these to me.” Clearly, this could not be possible, but I calmly (maybe half-psychotic calmly) yelled down to my husband to ask. I remember him saying yes and the rest gets a little foggy.

I do recall telling my husband to see if he could get my son to throw up. I also remember trying to find the number for my son’s neurologist. But the screen and the phone- so white and so slow. In the midst of cries from my child, and stroke-like bursts of white before my eyes, I found the number. For some reason, the young woman with the call service thought it best to patch me through to poison control instead of taking the patient’s name and number so an actual doctor could call me. But hey, I was in the stroke- zone and couldn’t think clearly. So instead, I connected with poison control. And that’s when things got really fun. Because poison control could not hear me. So I spent the next five minutes running around my house, saying the thing I refuse to say “can you hear me now?” in every possible nook and corner. I stood on my dining table. I went outside. Nothing. No reception.

At this point, I figured AT&T and god had colluded to punish me for all of my previous reception gripes. I gathered myself enough to string together an impressive array of profanity and decided to try to call the Dr. again. Because that’s who I really wanted to talk to. So by now, the husband is in bed with the child who could be overdosing, little brother is cowering under his sheets on the top bunk, and I am going stark raving mad trying to get more than 1 bar of service so I can make a call and save my child.

At this point, I was practically hanging from my rooftop. I’d successfully registered for a call back from the doc when I decided to try poison control again. Someone answers, there’s a long pause, and then they speak. But not in a way that I can understand. Enter insanity. Having lived in Asia, I pride myself on understanding the English spoken by many different accents. And maybe it was because my kid could have been dying, but I could not understand a word this person was saying!

As I was trying to spell the drug for the tenth time, the on call Doc rang through, saving the poison control woman and me. His calm and reassuring voice cut through the insanity with “He’s okay Mrs. Kinney. He might just be a little tired and wobbly in the morning, but he will be ok.” Suddenly I could breathe again. The white pops of light disappeared. I even had a good laugh once the adrenaline died down.

I did not have my perfect night. But I did have a healthy child. And it turns out, that was all I really needed.

 

The Drug Window

There’s a brief window of time that I’ve come to cherish immensely; a time when I get to experience my child without the haze of drugs clouding his mind and personality. I call it the drug window.

When my son was first diagnosed with Epilepsy, I felt such relief. We had been living in the unknown for close to 3 years, and I was thrilled to finally have an explanation for all of the falling, mental confusion, emotional outbursts, and fatigue. A diagnosis also meant we could move forward with a treatment plan.

In the beginning, all looked hopeful and bright. In my mind, he was going to start his meds; they’d gain control of his seizures; and we’d look forward to the day he’d grow out of them. But life is complicated and epilepsy is not an easy disease to treat. We currently find ourselves in the ultimate catch-22 where the drugs are absolutely necessary and beneficial, but the side-effects seem equally great.

Soon after taking his meds, my son slips into a strange and subdued place known as medically safe and seizure free. I have a love-hate relationship with these drugs. On one hand, they have the potential to control the epilepsy and save his life. On the other hand they’ve taken over his physiology. He’s easily agitated, horribly uncoordinated, showing signs of drug-induced ADHD, and generally out of whack.

I’ve gone from having a child with an unknown illness, to a child who’s stuck in an epic battle somewhere between drug and disease.

And I miss him terribly.

I get an opportunity to see him and his true personality before each 12 hour dosing- once after waking in the morning, and once again before bedtime. He may emerge at moments throughout the day, but nothing compares to the clarity I see in him at those particular times.

As such- I’ve come to cherish our windows more and more. I approach and await the waking and unfolding of my child day after day. I sit patiently and savor the moments when he emerges; the moments when I get to experience all that his mind has to offer in its less encumbered state.

Disease has a way of reminding us how devastatingly beautiful and fragile life is. It can crush and destroy us; but it can also push us toward perspective and focus.

I’m in the early stages here. Most of my days are still a mix of devastation and beauty. The devastation comes when I watch him stumble and struggle through seemingly simple movements and tasks, and wonder if he’s had another seizure. Beauty is found when his perseverance gives birth to breakthrough, when we celebrate his triumphs, and when we take joy in simple moments.

As I contemplate the future, I wonder what his quality of life will be like, how our lives may continue to change, and how to manage this disease while ushering my children through our new life here in China. It’s overwhelming really. So much has changed for us. We are in a new home, in a new country, and dealing with an illness that has and will continue to change the dynamics of our family. I would not hesitate to wave a magic wand and make the epilepsy disappear if I could; but I am grateful for the new insights and perspectives I’ve gained along this journey.

I’m beginning to see glimpses of what I would be missing and moments I would likely be pushing aside if I didn’t see my children through this new lens.

The early mornings that once exhausted me, have become a sacred time- one that I look forward to with excitement. I find it ironic that I spent days of my parenting life sleep-training my children, and now I’m the one drawing out bedtime. What I once viewed as tedious and unending nighttime conversations, are now treasured moments where I get to engage with my child and gain fresh insights into who he is.

I count myself among the privileged rank of parents who have children with special needs. Our journeys are challenging. They are often fraught with concerns, fears, frustrations, and loneliness. But they are also full of perspective, hope and joy.

I’m learning to grab a hold of joy amidst the sorrow and frustration; and to value this new gift of perspective and what it has ushered into my life.

In the short time since my son’s diagnosis I’ve learned to slow down, look closer, take less for granted, and approach my children as gifts waiting to be unwrapped.

I’d like to think I would have learned these things without such a serious medical situation, but I don’t know that I would have. I do know however; that should we choose to slow down and fully engage, we all have the ability to approach our children like we do any other gift- with interest, curiosity, excitement, and celebration.

In doing so, we have an opportunity to take part in one of the most profound and beautiful exchanges a parent and child can share in- the pure delight and joy of experiencing someone for who they are. And this I’ve found, is one of the greatest gifts we can give to another.

Above All- Kindness

I’m going to get myself into hot water on this one.

I have been in Shanghai for close to six weeks now. In that time we have moved into permanent housing, the children have started school, and I have begun the work of settling into our villa.

In the beginning, all was new and exciting. The boys were getting ready to start Kindergarten, and we were going to move into our new home and neighborhood filled with children. With these events came the prospect of many new friends.

Day one of school came and went. The boys got a little more comfortable with the routine of it, and all seemed relatively well. They would each come home with stories about things they learned, things they loved, and things they didn’t like so much. I was particularly surprised by how often they talked about other kids being unkind to them. I figured 1 of 3 things was happening. 1- My children were annoying others and getting push-back (very likely); 2- my kids were being far too sensitive to the way others treated them; or 3- kids in the international schools were a little tougher to navigate for one reason or another. I imagine there was and is a healthy mix of all of the above going on. So I have been listening and observing and trying to guide them to be good friends in their own lives, to ask first what they might be doing to contribute to the conflict, to speak up for themselves; and to ultimately shake off the way others treat them.

More recently, however, I have shifted from silent observer to aggravated mother. I see the way some of the children here act, and I find it sad if not outright appalling at times. I try to keep in mind that troubled children have trouble for good reasons and that I do not know what battles they are fighting through. My kids are socially weird for a variety of reasons. I can acknowledge that and trust the process of socializing with others to work out their rough edges.

It’s the mean and unkind that I can’t understand. I have to think that if children are mean- just flat out mean- it has to do with parenting or lack thereof. I am not trying to get on any soapbox here either. My failings as a parent are vast. My kids are bad at sharing and taking turns and following directions. They talk over people, like potty talk way too much, and have no desire to exhibit self-control. They are not the quietest or the most well- behaved.

In spite of all of these aggravating behaviors- they really love life and people. They like to meet other children. They are excited about what pants they are wearing, if their shoes light up, the horn on their bike, and loads of other little silly things. I realize that as much as I focus on the misbehavior that drives me insane; and on their tendency to do exactly what I don’t want them to do- the most important thing I can focus on is their heart.

I will take kindness over all the other behavior stuff any day. In the long run- these kids will learn how to behave as society expects. They will eventually get the food in their mouths when they eat and sit at the table until they finish their meals. Some day they will stop pulling their pants down at the drop of a hat. And sooner than later (I hope) they will stop introducing themselves as “Hi- my name is butt” in Chinese.

The world that surrounds our children will not shape their hearts well. It will not honor and care for their innocence or sense of wonder. This may be one of the more heartbreaking realizations I have had as a mother. I’m realizing; indeed realizing that if I spend my time and energy focusing on behavior over heart- I am not making the contribution to society that I want to make. When I as a parent focus my time and energy(the little that I have) on symptoms (behavior)- I miss the greater opportunity and impact that I can have on others and the world.

Everyone is talking about bullying these days. We all want to stop bullying. So let’s start in our homes. We have to recognize that we are shaping humans here, and as much as we want to say they are their own little people- let’s not fall prey to this notion that we have no influence. We can shape them into individuals who embrace or push away; who seek justice and clothe the poor or feed their own bellies in pursuit of their passions. We can raise children who look out for those falling behind and who notice the lonely kid in the corner, or we can raise kids who run past others without an ounce of thought.

It’s our choice. We do have a say. And today, I’m choosing kindness above all else.

On Epilepsy and Avoidance

I’m doing everything I shouldn’t be doing and nothing I really want to do. I am a master of mindlessness and avoidance, and it’s all I can really muster at the moment. I have decided numbing myself with social media, news, and politics is preferable to cleaning my house, researching epilepsy, or contemplating my sons recent diagnosis.

It’s been 10 days since we found out our son has epilepsy. I am relieved to have a diagnosis after two solid years of testing and re-testing and wondering. I am grateful that we have access to medicine for these seizures, and I am even more grateful that he seems to be adjusting well to the meds. I am.

But when night falls and life quiets down, I begin to think about things a bit more. And by think, I really mean worry. Nighttimes are the most challenging for me. In these quiet and calm moments, I am overcome by the urge to pull him into bed with us for the rest of eternity (or until he thinks that’s just weird and gross); but then I remember that I can’t actually sleep in the same bed as him, and that a sleep-deprived mom is a very bad mom. So instead, I sneak into his room, crawl into his bed, and lay next to his little body.

As I lay there listening to him breathe- I wonder what is going on in that amazing brain of his, and why it is doing what it’s doing. I wonder if we will ever truly understand the why. I am thankful for his breath. I can’t help but wonder if it will always be there. It’s unbearable to think. But I am a mother and mothers contemplate these horrible and difficult things. I take a deep breath to bring my mind back, back to his breath, back to the warmth of his body.

And there in the darkness- every hard moment of parenting this little guy and his twin brother has melted away. Every joy has magnified. Instead of feeling overwhelmed by the responsibility of having this child with a seizure-firing brain, I am just happy to have him.

Happy to be his mother.

Happy to watch him grow.

Happy to listen to him breathe.

Confessions Of A Hard-Ass Mama

Parent camps. We love to set up in one or another. Some of us try out certain spots, get comfy and set up permanent dwelling spaces. Others set up for a while and decide to move on as they outgrow the space.

I’m part of the parenting camp that brings all the gear. You know the one. We have the super wide, ultra prepared, loaded- with- all- the- amenities mobile home on wheels. I am camped out and ready. Have a need? I have an item. Have a behavioral issue? I have what I think is a solution. Sass, bully another, talk back, disobey- there will be a consequence. Succeed at something, use good manners, clean up after yourself, do something kind or thoughtful- I will be there to celebrate and lavish praise. Problem- meet answer. My camp is called the “hard-ass” camp by some. Rigid. Inflexible. Controlling. These are all words I’ve heard about my camp. I’m okay with that. I know I’m not perfect, so I certainly have no illusion that the parenting method I’ve chosen is perfect.

Being from this particular parenting camp can be exhausting. We thrive on consistency, follow through, and a host of other well-intentioned ethics. As a parent in this camp there are some things you never say, and certainly, never accept. Of these things is the foreign and silly idea known as going with the flow. Of utmost danger is the crazy practice known as taking the path of least resistance. Least resistance? That’s the “lazy” parent camp. For the people with no backbone. You know- the ones raising future delinquents.

Well, tonight was truly “one of those nights”, and you know what? I chose the path of least resistance. For a moment I questioned the integrity of my decision, even chastised myself. But the last few weeks have been very challenging. We’ve had a ton of Doctor’s appointments, done a ridiculous amount of waiting around in tiny office spaces, and have experienced a general increase in stress. To top things off, the boys have gained some very new freedoms with potty training; as well as an increase in personal responsibilities and mama expectations. My babies are no longer babies, and we’re all feeling it right now.

It’s no wonder that on this particular night, bedtime became a crescendo of protest from my children and sighs of absolute exhaustion from me. Could I fight it out with my 3-year-old and make him stay in his dark room just as I do every night? Sure. Could I show him who has authority by not caving into his cries and perceived demands? Absolutely. I may have even had a little more “me time” with my iPad or “adult time” with my husband (all incredibly important things I might add). But tonight I chose differently. Tonight I sent my husband down to his music studio with a glass of Whisky and told him I’d handle things.

A look of shock and amazement crossed my children’s faces as I opened the doors to their dark rooms and turned on the lights. I told them I would bring them snacks, drinks, and books. Naaman told me I looked beautiful and that he wanted to spend more time with me. Isaac said what a great day this truly was. I chatted with each of my sons and reminded myself that this was precious chatter that would fade soon enough. You could say I set aside my hard-ass mama rule book and went off-roading a bit. I like to say that I snuck into the other camp after dark. I met a boy. His name was flexibility, and we stole a kiss under the starry sky. It was freeing, memorable and full of possibility.

I left my camp in the interest of sanity and serenity, and I made some precious memories that night. It’s not that I plan to move anytime soon, but it’s nice to visit the other side for a different perspective and view from time to time.