Spring Break Project

The kids have been on spring break this week and we have had a great, relaxing time hanging out at the house as a family.  After all of the cold craziness, the weather turned out to be perfect so we spent the majority of our waking hours outside.  We all did little things around the place but Noah had his own project and I am so very proud of him.

At the beginning of the week, we decided to give Noah our old chicken coop.  A few years ago, a stray dog ate all my chickens and I never replaced them. They were mostly pet chickens (in fact they only laid one egg in the 7 months I had them) and I was afraid of getting attached to new birds and then having them get attacked too.  I fully recognize my relationship to chickens is not normal but they were sweet little guys and I was bummed.  Back to spring break... this is what we gifted Noah.

That's his spy pose.

He really wants to be a spy and obviously if you want to be a spy you have to have a clubhouse.  It had gotten into pretty bad shape though.  The roof was falling off and we were using it to store some hoses for our insulation machine so we all worked together and cleaned it out.  The hubby also fixed the roof but it was all Noah from there.

It was quite the diamond in the rough.

 All week long Noah worked.  He did odd jobs around the house in the mornings to earn money for spray paint and spent his afternoons hours getting it perfect.

It was a messy process. Fortunately we now have (almost) all of the paint out of his hair.

On Saturday, he put the final touches on his new clubhouse.  He is so proud of his creation.  

Presenting Noah's first "flip" and the international headquarters of MAPSER.

A Valentine's Apology (sort of)

I feel like my children deserve an apology for the fact their Valentine's parties coincided with grad school. I stayed up late in Thursday night to randomly place generic stickers all over a pre-colored box. I would like to post a picture but I'm afraid that my pinterest account might get deactivated for the absolute lack of creativity.  Ok. Here it is. Don't judge.

At this point,  half of you are thinking that at least I didn't send her to class empty-handed while the other half wonder why I haven't had my mommy-card revoked.  Personally, I think she's lucky I didn't send her to school with last year's Easter basket. (It is pink and sparkly and I was really tired.)

The guilt really comes in though when I look at previous creations. For Noah's first Valentine's Day school party he got a space ship. The next year he had a Captain America shield. That was BS (Before gradSchool). I had time to sleep back then. I also had 1/3 of the little people in my house as a do now. They were simple times. I could be creative.  I could go to the parties. I could paint with him. I could sleep.

My rational husband is quick to point out that I don't remember any of my Valentine's boxes and that's not why I am crazy.  Hopefully next year, when things are calmer,  I can go all out and make a cereal box monster or paper towel roll castle.  If not, I'm seriously considering just downloading pics of some really extravagant boxes and photo shopping them next my kids faces. Then when they are 34 I will sob hysterically that the don't remember the painstaking effort I put into making every holiday pinterest perfect for my little angels.

A Child of Texas

I remember the day I met Alyssa.  I was her younger brother’s foster mother so when the family member she was with could no longer keep her safe, CPS called me first.  My husband and I had signed up to foster with the hope of adopting at some point but we had been clear that we did not feel up to taking on a special needs kid.  When the caseworker explained the situation, she said that Alyssa had seizures as a baby but had outgrown them.  She was still on some medication as a precaution but I was assured that she did NOT have epilepsy.  Sometime I wonder what my answer would have been if anyone had known the truth about her little brain back then but regardless, Alyssa joined our family that night. 

Alyssa was two and half years old when she came to us.  She was mostly non-verbal, had some developmental delays and would scream for hours at a time.  It was tough road and there were times I thought I could not handle one more day.  Eventually the mama bear in me won out and I fell in love with the broken little girl who needed someone to love her through the pain and defend her in a system that did not always seem to have best interest at heart.  In November of 2012, 14 months after she came to me, the court terminated parental rights so Alyssa and her little brother, Bradley, were in route to becoming our forever children.  Christmas was amazing that year.  It seemed like everything was coming together for our little family.

On January 10^th, 2013 our perfect world collapsed.  Alyssa had a seizure on the way to school that morning.  She had only had one cluster of seizures in all the time she had been in our home.  That was a few months after we got her and her doctors said it was an anomaly, a result of the stress of being a foster child.  This time it wasn’t stress.  I laid her down beside me and she seized again and again and again.  We went to the emergency room, then took an ambulance to Cook’s Children’s Hospital.  Over the next three months we were admitted to the hospital six different times, went through multiple medications with horrid side effects and were driving several hours each week to see various specialists who might have an answer.  In spite of everything, Alyssa regressed to the point that she was back in pull-ups, could barely speak or walk some days and did not always know who we were.  Through therapy, she had worked past most of the delays she had when she came to us and was a fairly typical four year old but now there were days when she would simply lay in bed and stare with a vacant look in her eyes. 

An allergic reaction to an anti-seizure drug caused Alyssa to swell and spend several days in the hospital.

Our adoption had not been finalized yet, so Alyssa was still a foster child at that point.  We were lucky to have some amazing CASA workers, one of whom was a retired nurse who joined me at an appointment with Alyssa’s neurologist so that she could report to CPS exactly what the prognosis was.  The doctor could not explain the sudden onslaught of seizures and had little hope that Alyssa would ever be back to normal.  Shortly after, I was asked if we still wanted to adopt Alyssa.  Her caseworker said that she knew this was not what we signed up for.  We never planned to have a special needs child and they understood if we wanted to back out.  On May 31^st, 2013 my husband and I adopted Alyssa and Bradley. 

Adoption Day!

Eventually, we found a cocktail of medications that is currently controlling the seizures but not without some serious cognitive and behavioral side effects.  Alyssa is in speech and occupational therapy and has gained a lot of ground but regresses any time she has breakthrough seizures. One year ago, genetic tests revealed that she has PCDH-19 Epilepsy.  It is a rare and severe type of epilepsy with devastating complications.  Up to 70% of the girls with PCDH-19 develop cognitive delays.  Mental illness and behavioral problems are common.  Alyssa is also at an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy).  With this diagnosis, we know that if we can’t control the seizures, she will continue to decline.  As it stands, we have had to consider leaving our home and family to join the exodus of families who have forsaken everything in hope of a cure in Colorado.    

I know that there are people all over the world who are being forced from their homes and in the grand scheme of things, our situation is mild.  Honestly, if you are going to be forced to move somewhere, Colorado is about as good as you could hope for.  The mountains are beautiful and the people are great there, but Texas is our home.  Packing up would mean starting over.  My husband is a driller in the natural gas industry which is not prominent in that part of the country.  Leaving would mean abandoning our friends and our family and our church.  Worst of all, it means not ever coming home.  Crossing the state line to spend Christmas with my parents would mean risking arrest and even losing custody of our children for possessing the medicine that my daughter needs to stay alive. 

Alyssa

Alyssa is our daughter but she is also forever a child of Texas.   She was a foster child who legally belonged to the state and people of Texas.  When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us.  When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.  The failed war on drugs has created countless victims, including several children with epilepsy who have died waiting for laws to change.  It is not just those families who are broken right now, our entire country should be mourning the loss of our children whom we failed to protect.  I am adding my voice to the thousands of parents of children who are demanding the legalization of medical marijuana because I believe that our children should have access to a plant that is being effectively used to save their lives.  It is time that we stepped back from ineffective and non-scientific bans that keep medicine from kids who have no other hope.

 

How the Stars Aligned in 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!

 

 

The Mom I Wanted to Be

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.

Christmas with Epilepsy

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.

10.   Our family traditions are constantly being adapted to better fit her needs but we make changes with the knowledge that it may not be enough and that those changes may not be in the best interest of our boys.

 

The Lies I Believed

   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.