Wednesday, December 31, 2014
This summer I took a brutal cross cultural course as part of my master’s program. The class required 15 – 20 hours of reading per week along with several projects. It was exhausting. However, there was one project that I really got into: the cultural self-portrait. We had to create some type of art project that captured who we are and all of our identities.
I think we can all agree that I should continue to focus on psychology instead of art.
I am madly in love with the night sky. I have been since I was little. As a teenager my favorite chore was cleaning the kitchen because part of the job was taking the trash out. I would wait until everyone was in bed then walk barefoot down the driveway, listening to the crickets, breathing the country air and watching the stars in wonder. I still feel the most at peace under a big Texas night sky and I find myself drawn to it more when life becomes chaotic. So, for my self-portrait I created a sky. I filled it with stars that I labeled with titles such as student, mom, intern, or friend. I added race, gender, religion and orientation. I filled the whole canvas with stars of different sizes then added a window to demonstrate that most people have a very limited view of who I am. As I worked on my project, I thought a lot about which labels deserved the biggest stars in my life. I also noticed that some stars were differently sized than they would have been at another point in my life. Some parts of me have shined brighter, or had a spotlight thrust on them, this year while others have faded out.
I dislike the idea of summarizing the year in four photos and one cliché word or a listing of all my annual accomplishments. That doesn’t seem to fit. The sky however, has enough room for all the stars in all their phases. This year my faith flickered but is growing stronger again now. The advocate side of me shown brighter but not because I wanted it to, it’s just that sometimes the choice to remain silent is the equivalent of letting the darkness win. Fostering has faded for the moment because of other obligations but student is going strong for one more semester. I developed a pretty mean roundhouse at MMA. I gave up on some toxic relationships but found true friends in other places. There were times this year when the storms hid the stars and I felt like there was nothing left of me. There were other times when the night was clear and the world felt alive.
Like any night, some parts of 2014 were darker than others. That’s life. That’s every year. I’m actually hopeful for 2015, especially for the exciting plans that we have for summer. I know that there will be challenges. I will be embarking on a new career in the fall. The oilfield is pretty shaky right now which is great for gas prices but uncomfortable when your husband is a driller. Alyssa’s seizures have been pretty well controlled for a little while now so hopefully we can maintain that. Noah fully expects to have his Iron Man prototype up and running just as soon as we buy him a welder. I have a few more sweet months before my baby heads to school in the fall. No matter what lies ahead though, no matter how clear the skies or how dark the storms, I know the stars will keep on shining.
Happy New Year!
Monday, December 29, 2014
I spent a short time with a local counselor last spring as I was attempting to come to grips with Alyssa’s diagnosis. I quit seeing him after he suggested that it would help if we thought about “just readopting Alyssa out.” I have a whole blog / rant in my head about that but I’ll save it for later. One thing that the
idiot counselor said did help though. He explained how parents of kids with special
needs go through the grief process in much the same way that people do after a
death. We experience the stages of
denial, sadness, bargaining, anger and eventually acceptance or meaning
making. Our grief can be complicated
though. We often feel shame for being
anything other than the superhero that embraces their child’s uniqueness and
works hard to overcome every challenge. We have an added layer of fear because many diagnoses are uncertain, lead to further decline or result in untimely death.
We also tend to cycle through the stages repeatedly. There is a finality about death or a complete
loss that is different from living with a child with special needs. Every doctor’s appointment, teacher meeting
or random Saturday can bring to light some new limitation or loss. We grieve
all of these challenges that our children must face but also the idea of the child we expected
and the parent we wanted to be.
I grew up on ranches and in the rodeo. I cleaned stalls and fed the animals. I raced my horses down trails that grown men were afraid of. In high school, when backyard wresting was popular with my friends, I was always willing to jump in the ring with the guys. I was a tomboy in every sense of the word and I loved it. I don’t remember ever being told that there was anything I couldn’t do because I was a girl. I wanted a daughter like that: gritty, rough and tumble, adventuresome and fun. When I pictured my future daughter, I always imagined her running in from the pasture holding a frog with mud on her face or leading the boys out on some grand adventure. I used to say that my worst fear was to have a little girl that wanted to be a cheerleader. I pictured her growing up to be a cowgirl or doctor or the president or some amazing woman that would change the world. She would be smart and strong and fearless. I love and adore my daughter for who she is. I have also grieved the limits that epilepsy has placed on her childhood and future.
I wanted to be that country mom who gives the kids free rein as long as they are back at the house by sundown. I wanted to let all my children have the freedom to build forts and climb trees. To be fair, I don’t think that anyone is actually the parent that their childless-self pictured. Everything changes when you become responsible for another human being. For the most part though, I take that laid back approach with my boys. I am comfortable with scraped knees and dirty faces. I encourage them to take risks, explore, and fully enjoy the privilege of a childhood lived out in the country. With Alyssa, it’s different. Epilepsy won’t let me be the mom I want to be to her. I can’t let her go off exploring by herself because someone has to be there in case she has a seizure. I have to discourage risks because damage could be too great. I have to balance being the helicopter mom that her disorder demands with the part of my heart that still desperately desires to let her run free with her brothers. Twice a week I go to an MMA class that has been a god send for me. Noah attends the youth class and Bradley loves punching the bags. In a few years, he’ll be out there fighting with us too. Alyssa gets to stretch with me beforehand but that is the most involved she will ever be. Her doctors have been very clear that she cannot sustain a hit to the head and is not allowed to fight. My daughter, my only little girl, is different than the boys. I understand that it is because of the epilepsy and that one blow to her head could be devastating. Still, there is a pang in my chest when I look to the side and my daughter is the one who isn’t allowed to participate. This isn’t the mom I wanted to be.
Children rarely grow up to be exactly what their parents pictured. Many parents struggle to accept that their kids have chosen different paths. The difference is that parents of special needs children grieve because the different paths were not chosen by our children; they were forced on them. We aren’t the angels (or demons) that the media portrays. We are human. We are facing challenges that most of us never expected. We grieve in many ways over many things. Sometimes it looks like denial or rage or depression. Often it is mixed with fear and shame. Sometimes it is triggered by the big things like declining health or seizure clusters. Sometimes we are responding to the realization that one more hope has been dashed or one more limit has been added to an already long list. Sometimes it is simply difficult to live with the fact that the moms our children need are not the same as the ones we planned to be.
Saturday, December 27, 2014
There is a misconception in the outside world (ie: everyone not living with a person who has epilepsy) that as long as a person is not actively having seizures, all is well. That may be the case for some families dealing with less severe forms of the disorder but epilepsy is a constant presence for many people, even when the seizures are less frequent. We were fortunate this year to make it through Christmas without a cluster. We survived family, chaos, presents and irregular schedules. We had a great time with my grandparents who flew in from New York so that my grandmother could make us a traditional Italian dinner. In all of the festivities though, PCDH-19 was always lurking in the shadows. I don’t want the three people reading this to get idea that I'm complaining or that we have had a particularly hard time this season. For the most part, we had a wonderful Christmas. Since it did go fairly well though, I think that this is a great opportunity to share a few of the ways that epilepsy impact families like mine, even on the good days.
On Christmas Eve my family’s festivities started at 2:00 in the afternoon. I was there as we all sat down together for the first of four courses of pure awesomeness. Alyssa, however was not. Curt stayed home and brought her later in the afternoon so that she could get a full nap. We also had to leave the party sooner than we would have liked to make sure that she was able to be well rested the next morning. Unlike her cousins or her little brother, missing a nap is simply not an option for Alyssa. A lack of sleep can trigger seizures for people with epilepsy. Even on the holidays, we have to build our days around rest in a way that most other families do not.
Christmas is kind of a perfect storm when it comes to stress. The combination of cramped schedules, expensive wish lists and seeing family we may prefer to love from a distance can be a lot for anyone to handle. Even the positive stress of opening 4,985,157 presents can be overwhelming for lots of kids. Add all of that to a sugar high and meltdowns are bound to happen with the best of children. I notice that my boys are more emotional than normal and act out in ways they normally wouldn’t. That is what I consider typical. Epilepsy goes a step farther when stress is involved. Stress, like a lack of sleep, can cause seizures. The first time that Alyssa had seizures after she came to live with us was on Christmas day three years ago. The neurologist wrote a letter to the judge after that episode detailing the stress that Alyssa was under and stated that he believed her anxiety about changes to family visits was the cause of that cluster. Stress can also cause smaller neurological problems for Alyssa. She gets much more disoriented. She may have to be reminded about the same simple command multiple times or she may ask the same question repeatedly. In many ways, Alyssa is similar to her three year old brother and has to be watched accordingly even though it can be tempting to allow her the freedoms normally allowed to other kids her age.
The last time that we visited Alyssa’s epileptologist (a neurologist who specializes in epilepsy), she discussed her concerns about Alyssa’s impulsivity. The combination of medication and damage caused by previous seizures has resulted in very high levels of impulsivity for Alyssa. She often acts before she thinks or does something she has been warned about only moments before. Again, this is above and beyond what would be expected for a typical 5 year old. That has the potential to be dangerous because she may not assess the risk involved in an activity before diving in. This week we witnessed it in a much more minor manner. All the ladies in my family spent the afternoon at Painting With a Twist and I brought Alyssa along for some fun girls time. They have an instructor who walks you through each step of the painting so that everyone ends up with a (somewhat) similar piece at the end. In the beginning, Alyssa was following along fairly well. Her lines were less defined than the most of the adults’ but she was obviously trying to replicate the instructor’s work. Then we came to a more complicated step that several people needed help with. About a minute into the pause, I looked over and Alyssa’s entire canvas was covered with giant crosses. When there was a defined task to be completed she was fine but she could not leave her brush laying down in the dead space. On the plus side, my Christmas tree will likely only come out once a year while she now has a beautiful piece of abstract art hanging on the wall year round.
People often ask me if Alyssa is still having seizures and we are fortunate to have made it several months without any tonic clonics. However, I think it is important that people understand that a break from seizures does not equate to a complete healing. She has made great strides over the past year and we are hopeful that she will continue in this direction. In Buzzfeed style, I now leave you with my list of 10 ways that my family feels epilepsy on the good days.
1. No matter how many people are in the house, her bathroom door must always be unlocked so that we can get to her in an emergency.
2. Changes in diet have a huge impact on Alyssa, so even on special days she can’t live on only chocolate.
3. At the end of a long day, our bedroom door stays open so that we can hear the horrible scream if all our precautions weren’t enough to keep the monster at bay.
4. We mix Alyssa’s Depakote into cool whip because that is the only way she will take it. She was NOT enthusiastic about seeing homemade whipped cream covering her Christmas morning pancakes.
5. When the parents of children with PCDH-19 talk, the conversation always seems to end up on behavioral and emotional struggles. Alyssa often has trouble regulating her emotions, similar to a child much younger than her. During the holidays, this can be more pronounced because there is so much for her to process, less time to do so and often there is an audience.
6. Alyssa LOVES to play with hair and will impulsively start trying to style anyone sitting low enough for her to reach their head. We are practicing asking people BEFORE we style their hair… sometimes she still forgets.
7. The flu has been bad in our area recently and any sickness or even a low grade fever can trigger a cluster for Alyssa. That means that a simple flu could do irreversible brain damage to my child. It can be challenging to balance the desire to give her a typical childhood with the urge to protect her from every potential harm. Every Christmas parade, holiday event or party invitation can trigger a lengthy internal debate for me.
8. Sometimes the best answer for our family is no. I dislike missing family outings so that we can make an early bedtime. I hate having to scale back when my nature is to overdo the holidays but I know that going overboard could mean serious trouble for us. Sometimes I still resent it though.
9. The focus on rest, relaxation and health can be good for all of us. After a particularly stressful period on Christmas day, Curt and I took the kids for a walk in the woods. It was just the 5 of us enjoying the peace of nature and it was one of my favorite times of the day.
Wednesday, December 10, 2014
When faced with tragedy, the human brain often refuses to accept the information presented to it. We go into denial because the truth doesn’t make sense and it seems like more than we can handle. Eventually though, most people come to grips with reality even as painful as it is. We face the world that took the place of the one we knew. We sort through the beliefs that we once held dear hoping to find some that are still true and replacing those that aren’t. It is a painful but necessary process. It requires one to admit that they were wrong about people and life and sometimes their beliefs about world.
I have spent the last few months sorting through the lies and inaccuracies that I used to believe. I believed that certain people would be there for my family no matter what. I was wrong. I thought that other people were simply acquaintances or peers but they stepped up and stood beside me at my darkest moments. I thought that my children were healthy. I thought that my faith and good works somehow protected me from devastation. I thought life was going to look a certain way and our future held endless possibilities. I was wrong about all of that.
There is one particular lie that has been particularly hard to face lately. I based my goals and dreams on a belief that I now understand all too well is simply not true. Somehow in my naivety and high ambition, I swallowed the propaganda that women can have it all. The truth is that we, or at least I, simply can’t. I can’t parent my children in the way that they need and continue my education as planned. I can’t give everything required to attain an advanced degree and successfully manage a household while my husband works out of town and I have limited support. I can’t plan to work several more years on the degree needed to achieve my goals when I can’t even find childcare for two evenings a month next semester. It is not a matter of being willing to make sacrifices or lean in. The truth is that eventually you run out of things to give up and if I lean any farther I will likely just land on my face. It is not a matter of lacking intelligence, desire or drive. There are simply some hurdles that I am unable to clear.
This semester has been about facing the lies and giving up on unattainable dreams. I made the choice to not pursue a doctorate degree in psychology and stop when I complete my master’s in May. That means that I will not be qualified for the positions that I have dreamed of and worked towards for years. It means that I find myself in the uncomfortable position of trying to decide on a new direction with graduation looming only a few months away. It also means that I will be available for therapy appointments and hospital visits, field trips and homework. I may even be able to reintroduce my family to the concept of a home cooked meal.
At the moment, I think that I am making the right choice but that doesn’t make it any less painful. Taking the blinders off and recognizing the limitations in this life hurts. Coming to grips with the fact that the way things are is in no way close to the way I thought that they should be is a difficult process. I understand why some people choose to live like an ostrich and keep their heads buried deep enough that they do not have to acknowledge the world burning down all around them. I have to believe though that at some point beauty will come from the ashes. I can’t see the positive yet but at least I am a little closer to seeing the truth and that’s progress for me.
Friday, November 21, 2014
My head hurts and my lungs hurt and I’m tired and I want to take Niquil. That may seem like an odd way to start back at a blog I seemed to abandon millennia ago. Every other time I have tried to write though, it came out pretty angry. I don’t mean angry like just a little snarky. I mean my mom would blush and then call to give me a talking to. It’s not that I’m not still angry. It’s just that I’m too tired to care tonight and whiny is probably less upsetting to the people that I probably shouldn’t care about any more anyway than a rant would be.
So here’s the thing, I’m sick. I have been for a few days. I want nothing more than to take some Niquil and sleep. I can’t do that though. I have a special needs kid. At every moment, I have to be alert enough to hear that terrifying scream that says a seizure has started. There’s a monster under my little girl’s bed waiting to destroy her little brain. No matter how calm things are, I’m not allowed to breathe because we could lose every gain she’s made in therapy if she goes status epilepticus and I don’t get her to the hospital in time. Don’t even get me started on living in the shadow of SUDEP.
So that’s my life. I can’t breathe or relax or sleep. I can’t take Niquil when I’m sick. This isn’t the asterisk that I wanted.