Leave the diagnosis at home this Valentine’s Day

If you are the parent of a child with special needs, you are likely very well aware of the divorce statistics for our cohort.  Our marriages are significantly more likely to end than our peers with healthy children.  It just seems cruel that the disorders that try to steal our children attack our marriages too.  The truth is though we can experience stress levels similar to those of soldiers in combat and that puts strain on even the healthiest relationships. Our marriages aren’t doomed though.  We just need to understand what we are facing and protect our relationships while we weather the storm. 

I think that most couples initially go one of two ways when faced with a crisis like a child’s diagnosis: denial or obsession.  Many people feel so overwhelmed by what they are facing that they avoid it at all costs.  Those couples may fight about trivial things or become overly involved in other activities because facing the threat to their child is just too terrifying.  Others, like my husband and I, become laser focused on the medical situation.  It seems easier to juggle the advice of multiple specialists, a whole new drug regimen and a child with a very uncertain future when you block everything else out.  For a little while that works but in the long run, it just isn’t sustainable.

When my daughter first started having seizures it was all consuming. Everything we did revolved around epilepsy. Every conversation was related to her health.  Every nightmare consisted of her seizing until her little body couldn’t seize any more. Nothing mattered but keeping her alive.  We were in survival mode. I remember a conversation I had with Curt one of the times that we were in the hospital.  I told him how impressed I was that we had been able to fall together instead of apart.  I didn’t mean that we were a super couple who never faltered. We just felt so little support at the time that we were forced to lean on each other while we went through hell always thinking that the storm would pass and we would go back home to our normal lives.

When the dust finally started to settle and we came home to this life that was far from normal, we faced a whole new challenge; our family had to learn to talk to each other again.  It wasn’t that we weren’t speaking at all.  It just felt awkward to talk about anything that wasn’t related to epilepsy.  Suddenly, telling my husband about the woman who was a jerk at school seemed really trivial.  Bragging about our son’s report card at the dinner table felt wrong when his sister might never learn to read.  We used to sit up and talk for hours but every interaction had somehow shifted into a medical conference.  Even though he was always right there with me, I missed the connection to the man that I needed the most.

After weeks and weeks of nights that were spent at the hospital or lying beside our seizing princess, we were finally able to sneak away by ourselves for a few hours.  As we pulled out of my parents’ driveway after dropping of the kids, we made a decision that I think is a large part of why we are still together three years later.  We decided not to take epilepsy on our date.

When we decided not to talk about Alyssa’s health that evening, it freed us up to talk about everything else we had been neglecting.  We went to a steak house and talked like we used to.  All of the day to day conversations that had been deemed too trivial to mention were up for discussion.  The longer we spoke the more the murky medical haze seemed to life and we reconnected in a way that my soul desperately needed.  I don’t remember what he was said that night, but I vividly remember looking across the table and breathing deeply, knowing that we were going to be ok.  When we picked the kids back up, I felt like a weight had been lifted.  We still faced incredible odds with Alyssa but I knew we were facing them together. 

If you and your partner avoid the giant medical elephant in the room, you might consider setting aside a specific time to discuss it.  Sit down together and don’t get back up until you have confronted the fears and made a plan to fight this fight together.  However, if you feel like your partnership has become more about your child’s medical needs than about romance, I highly recommend that you take a date this Valentine’s Day and leave the diagnosis at home.  Give yourselves a chance to reconnect with each other without focusing on the disorder.  It will still be there when you get back but it might not look as overwhelming when you know that you aren’t fighting it alone. 

On the Anniversary of her Diagnosis

Today is the two year anniversary of my life as Humpty Dumpty.  On December 11, 2013, I stood in a WalMart parking lot and answered the phone call that changed everything.  That was the day that I broke. 

When Alyssa came to us, I knew that she’d had seizures as a baby.  The caseworker dropped her off with a bag of pills that had names I couldn’t pronounce but said that they were just a precaution.  She said Alyssa didn’t have epilepsy.  A few months later, on Christmas day, Alyssa had several long seizures in a row but the doctors told us that it was a fluke caused by the stress of foster care.  Then, a year later the seizures hit with a vengeance.  This time they didn’t say that it was a fluke or something that she would grow out of.

For months, Alyssa seized no matter what the doctors did and she kept losing ground cognitively.  Eventually, things started to settle down and we would sometimes go a few weeks between seizures. Her doctors remained worried though.  We were on our last available medication so if the seizures got worse again, our options were limited.  Alyssa’s neurologist referred us to an epileptologist who advised my husband and I to begin considering surgery.  They wanted to remove the part of her brain that the seizures were originating in.  The doctors said that we needed to have the surgery as soon as possible because the longer we waited, the more function she could lose and any damage would be more likely to be permanent.  

I went back and forth about the surgery for months. I was terrified of allowing the doctors to remove a part of her brain but I was just as scared of saying no.  Even the preparations for the surgery was dangerous.  She would need to spend a week in the hospital and come off of all her medications.  The plan was to cause Alyssa to have as many seizures as possible while they ran tests to determine the precise part of her brain that was malfunctioning. We already knew how devastating seizures could be but there was an additional risk.  There was a chance that when we tried to put Alyssa back on all of her medication at the end of the testing, they wouldn’t work.

I finally agreed to the surgery on one condition; I wanted genetic testing first.  No one could tell us why Alyssa was seizing and we had learned that there are some types of epilepsy that have genetic causes.  Since we have very little information on her birth family’s health history, I felt like we needed to check for a disorder before slicing into her brain.  The doctors were annoyed, especially when insurance initially denied the testing.  I dug my heals in though and eventually they swabbed her mouth and ran an epilepsy panel, all while telling me not to expect anything.  While we waited on the results we scheduled the testing for the last week of December. I wanted her to have one good Christmas before everything went haywire again.

All of that led up to that day in the WalMart parking lot. I loaded my groceries and the little kids into the car and was just about to take off when my phone rang.  Our epileptologist told me that the results were back and they changed everything.  She told me that Alyssa had a genetic disorder called PCDH19 epilepsy.  Of course I had never heard of that.  At the time there were only about 200 girls in the world who had been given the diagnosis.  She told me that this new label meant the surgery was no longer an option because if they removed a piece of her brain, the seizures would just come back in another area.  I learned that Alyssa was at a higher risk for SUDEP and a shorter life expectancy.  She said that the seizures might never stop and that her IQ would continue to drop with each cluster until it landed somewhere between 60 and 80.  I felt like I was Humpty Dumpty being pushed off the wall.

I got back in the car and tried not to cry to hard because I didn’t want to scare the kids but something had broken in my soul.  I called my husband but couldn’t get through so I called my mom while I drove. When I finally made it to the house, Curt pulled into the driveway behind me.  My husband works in the oilfield so there have been many times when things were difficult and he was gone.  Every time I really need him though, he is there and that day was no different.  We fell apart together that afternoon. 

When the tears finally slowed down, I wanted to crawl in bed and never get out.  I didn’t think I could face the world again.  The IQ numbers kept rumbling through my mind.  You see, I have never been one to care much about sports or popularity or physical perfection.  My dreams for Alyssa were that she would be a brilliant doctor or the president, but now she might not be able to live independently.  It all seemed so cruel and hopeless.  I think Curt knew that if I shut myself in the dark that day, it would have been even harder to go on so he talked me into going to my MMA class.  I had a deal with the instructor that if I had a day when all I could do was punch the bag, we would do that.  I’m sure I looked like a ragged mess when I walked in and said that hitting was all I had in me.  He never prodded but I spent the next hour taking my devastation out on the heavy bag.  Then I went home and went to bed.

I hated the sun when it came up the next morning.  The world seemed so happy and normal but it wasn’t the same.  I had written PCDH19 down on a napkin in my car but I wiped my face with it while I was crying so I had to call the doctor’s office and ask for the name of the disorder again.  When I hung up the phone, I Googled the random string of characters that I didn’t understand but already hated and found the Alliance and the Facebook group that I would come to depend on.

The next few months were dark. After months of fighting for her life, my body and heart were already exhausted but the little flicker of hope I had remaining had been extinguished in the parking lot that day.  I even grieved the loss of the surgery I had been so afraid of.  It was a terrifying prospect to cut out a part of her brain on the chance that it would give her a better future but at least there was some hope with that option.  In January we hit the one year anniversary of the seizures starting and I hit rock bottom.  It’s hard to live without hope.

When Humpty Dumpty fell, he at least had people who attempted to repair his shell but there are some kinds of broken where the pieces just won’t go back together.  Finding out that your child won’t ever be ok is that kind of broken.  You can try to patch things up but they won’t ever be the same again.  It takes time to come to grips with that and the process can be dark and lonely.

This anniversary, I am keeping myself busy but I’m not falling back apart. I’m finally learning how to be ok with this life and the uncertainty we face. It helps that some amazing research is being done all around the world so our future is probably not as bleak as our initial prognosis. More than anything though, I think I’m adjusting to life as Humpty Dumpty.  I’ve had the time and space to get made about being pushed off the wall.  I worked on grieving the broken pieces and accepting that they won’t ever go back together the way they were before that call.  I’ve also realized that there is some beauty in brokenness.  I am not grateful for this disorder and I would change it if I could, but sometimes I connect with people on a different level than I could before.  Sometimes I appreciate the life and time that we do have in a way that I didn’t before I knew how fleeting it could be.  Sometimes I look around and see other people who have just been knocked off the wall and I appreciate that my own journey has prepared me to help them on theirs.

Adoption & Epilepsy

Ask any adoptive parent about their home study and they will tell you about the invasive questions they were asked.  Most of us have stories of the awkwardness of a complete stranger sitting calmly in our living rooms while demanding information that would make even the most open person blush.  It is the adoption equivalent of prenatal care.  Birth mothers have to put their feet up in the stirrups for the OB/GYN but we have to open our nightstand drawers for a social worker. 

Looking back, the part of my home study that stands out the most is not the section with the intimate questions, it was the discussion about the children we would someday take into our home.  I vividly remember the social worker asking us if we were interested in taking in children with special needs.  My husband and I had spoken at length on the topic ahead of time and told her that we were willing to take on learning disabilities or minor challenges.  I remember saying that I admired the families that fostered and adopted kids with special needs but that just wasn’t us.  I said it wouldn’t fit our lifestyle. It all feels pretty ironic now.

When I was pregnant with my son, I prayed that he would be healthy and did everything I could to give him the best shot at a good start.  I stayed pretty healthy, went to my appointments, decorated a nursery and ate animal cookies every time my developing baby demanded them. Still, I knew that there was always a chance that something would happen and we could face challenges.  Even when you do everything you can to improve the odds, childbirth really is something of a crapshoot. Adoption is different though.  A professional comes to your home and writes out exactly what you are looking for in a child. She asks you about race and age and gender.  You get a choice about disabilities, except when you don’t.

Finding out that your child has a disability can be devastating for any parent.  We often go through the stages of grief much like you would after a death but we can cycle back through them with each new limitation, emergency or worsening prognosis.  We have to learn to live in Holland and give up on dreams that we cherished since we ourselves were children.  Often all of this is done while in crisis so we do not have the time to sit down and fall apart because we are fighting desperately for our children’s lives and futures. There will come a time when we adjust to this new life but the initiation is brutal and leaves wounds that never really heal. 

Looking back I think that our adoption experience complicated how I processed Alyssa’s diagnosis.  No parent wants their child to have disabilities but we had specifically requested a kid that was “normal.”  When I got the call about Alyssa, her case worker explicitly stated that she did not have epilepsy.  We had these grand life plans that didn’t involve constant trips to doctors and therapies or always having to live near modern medical facilities.  We did something good by choosing to foster and adopt so it didn’t seem fair that the child we received was not the one we asked for. I was angry about the unfairness of it all for a very long time.

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems.  I relate to adoptive parents too but our story isn’t just about adoption anymore.  I switch back and forth between groups depending on the support I need at the moment.  It is hard to find your tribe when you really fit somewhere in the middle and it is easy to feel alone when there isn’t a group with your name on it.

I don’t say all of this to make anyone feel sorry for us.  I am not asking for pity or pats on the back or patronizing comments about how God only gives special kids to special people.  I have realized over the past few weeks that there are many other families that find themselves in our position and I think maybe they struggle like I have.  I’m writing this tonight for the people who aren’t quite sure what group they belong to.  I’m writing to the mother who is raging at God for rewarding her good deeds with the chance to watch her child die.  I’m writing this for the people that lay awake at night wondering what they did to deserve this horror.  I’m writing this for the person who feels guilty because they are so angry and overwhelmed when that gets mixed up with the fear and grief.  I’m writing this to the parent that feels alone because I want you to know that I’m here too.  

We said exactly what we could handle and life didn’t listen.  We had great plans for the families we were building but those changed when the special needs surfaced. It is confusing and hard and not at all fair.  I can tell you though that it will eventually get better.  I know you didn’t ask for these trials but I also believe that you can make it through.  Give yourself some grace, accept the messiness and just keep breathing. 

I'm Not Dancing

   If you ask adoptive mothers about things people say that make us roll our eyes, remarks about how lucky our children are to have us will always make the list.  We argue that we are lucky to have our children and it is not the other way around.  My kids are not lucky to have been so abused and neglected that they required an entirely new family.  However, I still recognize that Alyssa’s life and medical care would be much different if she still lived with her birth mother.  It is likely that she would not receive many of the services and treatments that I have advocated for.  It is likely that her first family would not be able to devote the resources needed to have her in an appropriate school or be able to focus on her health in the way that we are. 

   Those are uncomfortable thoughts. Alyssa is a child worthy of every treatment, therapy or resource that can help unlock her potential.  She deserves that, no matter who her family is, just like every other child does.  The fact that she is now my daughter does not imbue her with some special status that now qualifies her for a better outcome, or at least it shouldn’t.  She is valuable because she is valuable because she is valuable.  The end.

   I believe that all children are valuable and precious and worthy of the best medical care.  I believe that when kids get sick, it is our responsibility as a community to work towards healing and treatments that can at least improve their lives whenever possible. When it comes to children, demographics, family economics and specific diagnosis should not matter.  Unfortunately, this week the Texas legislature showed that they prioritize some patients over others and believe some conditions are more worthy of treatments.

   A bill legalizing medical marijuana, in an extremely limited form, is on its way to the governor’s desk.  I absolutely believe in legalization (as I have written about here) and I should be celebrating.  I am not.  First, there are many holes in the law that passed.  (You can read a great article about that here.)  It is poorly written and does not allow different ratios of THC, which are often needed to treat patients effectively.  Still it is a first step.  What bothers me more is the implication that my suffering child is more worthy of treatment than someone else’s child because of her diagnosis.

   This law explicitly states that only CBD oil is allowable and only for people with intractable epilepsy.  If you don’t know, medical marijuana has been a game changer in the world of epilepsy.  For the 30% of patients of who are not able to control their seizures through available medical treatments, this plant has been a godsend.  It has provided hope to families fighting epilepsy that had no hope before and it has effectively worked when nothing else has. At the same time, the movement towards legalization has also brought unprecedented awareness to epilepsy and our fight for a cure.

   Medical marijuana has also helped veterans with PTSD gain control of their symptoms and live normal lives.  In other states it has been used to treat kids with Crohn’s disease or multiple sclerosis.  Although the research is still in its infancy, due to archaic federal laws, even some people with autism seem to show improvements when treated with different ratios of CBD and THC.  Medical marijuana also works wonders for many people battling cancer.  Yet somehow in the movement to gain treatment for our own children, we decided that all of those patients were somehow less worthy of treatment because they carry a different label than our kids. 

   Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay.  Our children are dying while they wait for legalization.  We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant.  That is devastating and unacceptable.  It is equally appalling that we would deny other parents the chance to save their children.

  I should be dancing because we finally have some semblance of legalization.  I am not.  Instead I find myself very conflicted.  I am angry that politicians were so busy fighting about another bill that they did not vote on the comprehensive medical marijuana bill.  I am sad that many of the marijuana refugees will still not be able to come home.  I am frustrated the current version may not be broad enough to create the infrastructure needed for us to actually have access to the plant we so desperately need.  I am heartbroken that a gain for Alyssa does not equate to hope for my friends whose children are also facing life-threatening diagnoses. I am hopeful that when the politicians realize that limited legalization does not lead to the fall of civilization as we know it, they will come together and create a more comprehensive set of medical marijuana laws.   I am hopeful that this small step leads to more.  I am hopeful, but I am not dancing. 

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.

 

The Little Blue Cot

   It has occurred to me today that God is in control.  Someone that I greatly admire and care deeply for received a difficult diagnosis recently.  In the Facebook post where she shared her condition, she made the statement that even though she was surprised, God wasn’t.  That’s been rumbling around in my head ever since. 

   This morning I was thinking about the little blue cot in my dining room.  We got it for Christmas.  The Little People were still in foster care then so they received a bunch of donated gifts from our agency.  When our caseworker brought them, she brought us this little, blue, child-sized cot.  Hubby and I thanked her for everything and exchanged odd glances.  What were we going to do with the cot? Apparently, when she was picking up the kids’ bags, she saw that laying out and felt like we needed it.  I stuck it off to the side of my room because I didn’t see the need.  We talked that night about what kind of person would even donate such a random gift.  It’s not exactly at the top of most children’s gift lists.

   In January, Little Miss got sick and I pulled the little blue cot out and set her up next to my bed so I would hear her if she started to have a seizure.  The seizures kept coming and the cot stayed out.  Usually if she has one, she sleeps for about 30 minutes afterwards.  On days that she has clusters of seizures (thankfully those are becoming fewer) she may have 10 – 15 in a day.  She may spend the majority of the day incapacitated so I bring the cot into whatever room that I am working in.  I can cook dinner or do schoolwork or help Captain color and still be close by if she needs me.  That little blue cot has made a big difference in our acclimation to this new world with epilepsy.  It is one of those little things that you suddenly become really grateful for when you are forced to start counting the blessings that you do still have. 

   I have struggled lately with some of the limits we have come to realize recently but this morning I was amazed at the providence displayed by that gift.  Back in December when I still though temper tantrums were our biggest issue, he was already putting things into place for this fight.  The God that cares about the sparrows and the flowers knew before I did that we would have days where my little princess was unconscious for 8 hours straight.  He knew that while I was working on my semester projects, her brain would be misfiring.  He knew that her brothers needed me to not be stuck in her bedroom waiting for the next episode while they tried to tend to themselves.  He knew that in the chaos and the pain and the overwhelming distress, we would need a little blue cot for her to lay on with her blanket and her bear.  As much as this has shaken me, I find it comforting to know that God is still on His throne.  He was not surprised.  He knew this was coming and He was prepared to supply all our needs before we even knew that they existed.  If you are in crisis today, take a look around.  You may just see evidence of the creator who knew what was coming and is with you through it all.  You might even see your own example of a little blue cot.