Dear Daughter: It’s OK to hurt.

Tonight I sat on the couch with my broken little girl and held her while she cried. Tonight we watched a movie and held a puppy while we waited for the grief to subside.  Tonight, once again, I told her that it’s OK to hurt.

As a mother, my instinct is to kiss boo boos and dry tears.  It hurts me to see my children hurt.  I want to pull them to my chest and keep them far from any one or any place that would ever do them harm.  The problem is that my children came from the place of harm.   My children were born to the family that hurt them.  I can do everything in my power to change their present and future but I can’t erase their history.

Adoptive families often struggle with how much contact to have with their birth families.  Open adoptions are a great option for many people but in cases where children were adopted from foster care there are often safety concerns and painful histories that have to be taken into consideration.  My husband and I have chosen not to force contact with our kids’ biological parents until our kids ask for it.  They know that they are adopted and when the time comes that they want to reach out, assuming that it is safe and healthy, we will support them.  In the meantime, we continue to cultivate a relationship with their biological siblings.  Those kids love my children and did not do anything to deserve their family being torn apart.  We promised them that we would work hard to maintain their relationships with our kids and we have stood by that.  It hasn’t been easy though. 

This weekend we had a visit with some of Bradley and Alyssa’s siblings.  The kids looked forward to it for days and Alyssa literally jumped up and down and started dancing in the middle of the restaurant when she saw them pull up.  She spent an hour and half with her sister, T, taking turns braiding and rebraiding each other’s hair.  They have a special connection and adore each other even though they are not able to connect as often as they would like.  

When it was time to go, Alyssa clung to T like her life depended on it and she sobbed.  Her little heart broke like it did when she first lost her birth family and like it does every time we have to say good bye.  Even though she knows that she will see them again, it hurt.  Even though she was promised a phone call in the next few days, it hurt.  The whole thing just hurts. 

I watched my husband scoop her up in his big, gentle arms to carry her to the car and I wondered for a moment if it was worth it.  It makes no sense to bring your child to a visit knowing that she will leave in tears. The mama bear in me wants to hole up in a cave and never come back so that she won’t hurt again.  Instead, I looked her in the eyes and told her that it was ok to be sad about leaving. 

When we got home we cuddled on the couch and watched a movie while she tried to sort things out.  That night she raged and said she hated me.  In the morning she asked if I remembered the time that she was really sad after seeing her sister.  I told her again that it’s ok to hurt sometimes.

I try not to tell Alyssa that it will be ok because I don’t know that it will.  I don’t attempt to stop the tears because they exist for a reason.  It would not be fair for me to deny that her truth is painful.  Instead, I give her permission to grieve and I sit with her until the storm passes.

I want my kids to grow up knowing that they don’t always have to run from pain.  I want my children to learn to love bravely and that means embracing risk.  We mediate that risk by preparing for visits, planning downtime afterwards and monitoring closely what is said but we know that seeing their siblings may open up old wounds.  If you aren’t intimately acquainted with adoption, that may seem reckless. We understand though that the benefit of love is greater than the cost.

Over the past few years I have had to learn the lesson that Alyssa is learning now.  Sometimes love hurts but it is worth it.  Foster children may leave and take a piece of your heart but it is worth it because what remains is better than the whole you had before.  Friends may walk away but it is still worth it to trust and feel connection with others.  The epilepsy could win but it is worth it to love Alyssa. 

It is better to love and hurt than to never love. Painful goodbyes mean that you had a chance to say hello.  Even if it hurts to leave, an evening spent braiding your sister’s hair is worth it. It would be easier to walk away and hope that she forgets about her birth family but that’s not what is best for my daughter.  I want her to know that even if they can’t grow up together like they should have, loving your siblings is worth it. It’s ok to hurt because that means that you loved.

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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.

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.