Tuesday, August 23, 2016

About those battles.

Our fears of the symptoms we were seeing from Abigail were confirmed a week ago today.  She has an optic glioma on her left optic nerve (a tumor common in NF).  It is causing neurological symptoms and has caused her vision to become worse.

The words to describe how I feel aren't there.  It seems like it can't actually be real.  But, I wake up, and there she is with her glasses.  And, questions.  Looking to me for security in something that she isn't sure about.

As we try to process all of it, Jason asked the perfect question, 'what is your biggest fear with it?'  I thought for a few minutes.  And, the thought has continued to go through my mind since then.

My fear is that this steals her innocence.  She no longer worries only about the things seven year olds worry about.  She also worries about losing all of her vision in one eye.  And, chemotherapy.  She wants to know if she'll always have to wear glasses, now. Can the tumor just go away on it's own?  What will her friends think if she tells them?  Will it hurt?  Will they do surgery?

And, as I answer those questions, I find myself completely unable to say the words 'we could pray' because my bigger fear is that it will rob her of her childlike faith.  What if I say, 'we could pray that the tumor goes away on it's own' and it doesn't.  What does she internalize about God?  How do I tell her that, from my experience, prayer doesn't seem to change much externally? 

I realize as I think these things, that they're really me, projecting those things that have shaken my own faith, onto my daughter.  If she asks those big questions, I don't have any answers right now.  I just have bigger questions.  Ones that scare me.  Ones that I've been wrestling with for quite some time.  Ones, that I fear, I will wrestle with always, this side of heaven.

I want words, to wrap up neatly, all the hard things in this world, for my children.  I want to be able to give them concrete reasons that bad things happen.  I want to point to where God is in all of them.  I have none of those things.  They don't exist.  And, when you're on the outside, looking on other people experiencing hard things, it's easy to say, 'well, sometimes hard things happen, and we just don't know why.'  But, when you're staring into the big brown eyes of you daughter, and telling her she has a brain tumor, that doesn't cut it.  Nothing does.  But, you promise to go into battle with her.  To answer questions.  To hold her when she's scared.  And, you say the things you know are true, even when they don't feel even a little bit true.  And, you pray that somehow, her little heart is protected for just a little while longer. 

Saturday, August 6, 2016

Big Battles.


 'Sometimes, real superheroes live in the hearts of small children fighting big battles.'




Dearest littles,

   Here are a few things that I want you to know as you face the battles that lie ahead.  First, and most importantly, superheroes never have to do things alone.  Their Mamas and Papas are always right there with them.  And, it's true, there are moments when we must hand you over to someone else.  Someone who knows more about brains and spinal cords, hearts, spines, and so much more.  But, those people are ones we have asked to join you in your journeys to fight your big battles.  They are so very special.  Without them, we would not have the tools and knowledge we need to help when they're not around.  Some of them give us the amazing things you put in your body each day so that you can focus on fighting big battles.  Some of them have to hurt you to make you stronger.  Those are the hardest for us, too.  So it's okay to not understand that and feel so very angry at them.  I think, someday, you will understand it better.





Sometimes, superheroes flash their toothless grins when they're in the strong arms of those who help them fly. Those moments are so very special. They are confident enough in themselves to know that it's okay to let someone else hold you up when you're unable to fly alone.  (In case you're unsure, none of us can fly alone.)  And, you can let other people see the person behind the magic, it doesn't have to be done with hidden wires.  Living with the lie that we can do it without others, or trying to hide the man controlling the wires only kills the superhero.  It gets swallowed by the fear of being found out.  So my three littles, always lean into those arms, spread your arms, and breathe in deep the air that rushes past you as you fly.  We will do our best to have our arms ready to help whenever we can.  You are some of the very best fliers we know!


It's okay to be unsure.  Being a superhero can be both exhilarating and terrifying.  The battles you have fought already prepare you for the ones that lie ahead.  But, they also leave you with the scars and the dreaded knowledge of what those future things can look like.  And, sometimes, the battle is a brand new one.  The thing you face may be terrifying.  Feel free to wear your uncertain face during those times.  You are not required to smile through it all.  Being brave means knowing your limits.  It means facing things that terrify you. We will be there explaining those terrifying things the best that we can.  And, we will be cheering so damn loud as you face them, even if you face them through a screaming, kicking, crying fit.  Because small children and adults are allowed to be terrified.  This life can be quite terrifying at times.  



It's so very okay to not fly some days.  It's okay to be the kind of superhero that clings to your Papa and Mama.  It's okay to suck your thumb, snuggle lambie, carry your blanket around, and watch sesame street to take your mind off of things.  We will hold you so tight during those times.  Superpowers often come from comfort objects.  They give us the power to face the world again, always remembering they will be there when we need them.  There's no shame in getting your superpowers recharged.  Being a superhero is exhausting.  Put your cape away for a while, and just go back to your regular everyday job of being a kid.  You're pretty amazing at that, too!

The truth is, though, that we have no idea what we're doing in these battles.  That when we watch you all face hard things, our hearts ache in such very big ways.  We are trying to fly, but it's often awkward.  We have our unsure faces on.  And, we most certainly lean into our Papa, and comfort objects.  We want things to be hard enough for you that you can face the world with confidence.  But, for whatever reason, our family seems to have gotten an extra dose of hard things.  The weeks ahead promise to be filled with some big battles for all of you.  No matter how tired we are, how very little we feel like we have left to give, we promise to be there with you through those battles. 

Always remember, we can do hard things.  You don't have to superhero alone.  Really, superheroes lie in the hearts of small children facing big battles with the help, love, and support of the people around them.  We just leave that last part off because we are so very proud of how you all face your big battles.

With the deepest of love,

Mama and Papa


Sunday, July 24, 2016

Truth

I didn't want to go to church today.  I love being there.  The body I'm part of almost always makes me leave feeling encouraged. But, I'm feeling a bit raw right now, and did not want to go because I knew what I would do.  And I did.

 
 This summer has been full.  Appointments mixed with some fun things.  But, the appointments have all felt heavy.  This week we have two appointments.  The following week we have an appointment.  The following week we have an appointment.  The following week Asher has surgery.  And, in that mix, we're working on preschool and IEP stuff for Shilo.  And, Abigail goes back to school.  And, Jason has had so little time off.  It's all just sort of building up.  Which, in and of itself leaves me feeling overwhelmed.

But, the surgery is, quite honestly, the thing that is always right there at the front of my mind.  I'm not any more nervous about the surgery than I have been others, my kids have had.  I think he'll do great.  I think he'll recover.  I don't think there will be complications.

I don't want to do this.  I don't want to drive to the hospital, and sit in a small room pre-surgery with a hungry baby.  I don't want to sit in the waiting room for hours, while a nurse rounds every hour telling us how it is going.  I don't want to see the healthy, active toddler I handed off, in pain, and with tubes and wires.  Most of all, I don't want to hand him off.  I don't want to give him to a doctor.  I don't care how great she is.  I don't care if she's done this surgery lots of times.  I want to be anywhere but at the hospital, giving my third child over, for a major surgery.  I'm tired of major surgeries.  I'm tired of surgeries.  I'm tired of doctors.  I'm tired of diagnoses, and medical, and all of it.

So, as we sang this song today, I sobbed.  And, during the sermon, I cried some more.  And, at the end, when there was prayer, I sobbed again.  I don't know when hard things will end for us.  Perhaps, never, this side of heaven. I don't have anything great or beautiful to end this with.  The things I might usually say here, while still true, are not how I feel at this moment.  I want to be honest.  And, I want people to know that it's okay to struggle without having the answers.  It's also okay to let your friends struggle without trying to give them the answers.  Sometimes, things are just hard.

I will leave you with a few pictures because it's been a little while since I've shared any. 



Asher nursing while Shilo snuggles.





Fourth of July fun!

Thursday, July 14, 2016

One day.

Tonight, a little boy laid his head on my shoulder, clinging to his blanket, and I sang our song to him.  Baby Mine, in case you're wondering.  I kissed him over and over and put him to bed.  He would've let me hold him like that until he fell asleep.  I would've liked to have stayed there willing tomorrow to not come. 

It seems in the fight to be heard, to have things recognized, and for doctors to affirm things, we have reached the pinnacle.  Tomorrow, we sit down with a geneticist and go over all the things.  In reality, it's an appointment that sucks for the simple fact that the whole focus is on all of the things that are wrong.  Not only the things you know, but they start pointing out the way the ears rotate, and before you know it, you're certain that your kid doesn't have a single body part that came out right.
But, it also means my fight finally landed us where I knew we needed to be.  And, I want nothing more than to move back and be wrong.  To be the crazy mom that so many suspected me of being. 

Tonight, I sit here wondering how we ended up in this place.  It seems a little more like the stories you read in a magazine, where despite all the hardships, it ends super upbeat, with a picture of the family making cookies together and laughing in the kitchen. 
But, we live in the next part, where you fade out, everyone loses their plastic smiles, sigh with relief, and get back to life.  The kind where you accidently give your son, your daughter's thyroid meds and call poison control.  Then, you wonder, how God saw you as the person fit to be the parent of three kids with special needs because you can't even give the right kid the right medicine.
Sometimes, right before big hard things, like surgeries, testing, or appointments where I think we might get bad news, I fantasize that we run off to a tropical island together, and live worry free. No doctors.  No therapies.  And, certainly no diagnoses.  Then my stupid brain goes, 'but if you didn't go to the doctor, Shilo would die because she needs seizure meds and thyroid meds.'  Not even my brain will let me be irresponsible for a few minutes.

The big hard truth of this summer is I had hopes of doing all the fun things with Abigail since she goes to a school now.  But, thus far, Shilo has had surgery, we've had tons of appointments, and therapies, and Asher has had multiple test.  We have scheduled his spinal cord surgery for August.  And, I'm trying to squeeze all of our big summer bucket list items into the last two weeks.

Tomorrow, I'll put on my brave girl face.  I'll ask all the questions, and use all the big fancy medical words so everyone knows that I know what I'm talking about.  And, I'll pretend like I expected whatever it is that he tells us.  I'll nurse Asher, we'll get in the car to go home, and he'll fall asleep.  I'll cry.  Jason will hold my hand and say, 'how you doing, mama?'  Then we'll pick up our other kids, and get back to life. 
At bedtime, my little boy will lay his head on my shoulder while he clings to his blanket.  I'll sing him our song, and will the day not to end.  I'll lay him down, and he'll fall asleep.  It will be as if nothing changed, and everything changed, in one day.

Wednesday, July 6, 2016

Storms.

I live in the Midwest.  We tend to stand on the porch and watch as the storm clouds roll in, and the thunder begins.  But, once the weather gets strong enough, we head back in to our protective covering.  And, if the siren goes off, you better believe we're headed to the basement.  We aren't taking any chances.  We know how to appreciate  a storm, and we know when to retreat to safety.

Today, I took my three trips to the car.  First, I loaded our diaper bag, and gear for the day.  My second trip, I buckled Asher in.  And, as I stood on the porch locking the door and holding Shilo, it began to sprinkle.  She was my last trip. I got her in her seat, and hurried around to get in, and out of the rain.
I drove off.  The rain wasn't very heavy.  I was headed west.  The rain was headed southeast.  So as I drove, to the left of me, the sky was dark, and promised a good storm.  To the right, there was a reminder that the storm was going to pass.  And just ahead of me, very faintly, stood a rainbow you could only see half of.  I drove towards it.  It appeared to be just beyond me, giving the illusion if I drove just a little further, maybe, just possibly, I could pass under it into some magical utopia full of great things. 

But, I knew that wasn't in the plan for the day.  I was going to head west for only so far, and then my destiny was due south.  Right through the storm.  So I took a deep breath, gripped the wheel, and turned on my headlights. 
It wasn't long before the downpour was so hard that even with my wipers on high, and a slower speed, I could barely see any of the other vehicles around me.  But, I trudged forward, at a slower pace to remain safe.  I didn't have much choice.  I had to be somewhere, and the only way to get there was to drive through that storm.
By the time we reached our destination, the sky was beginning to lighten.  There were only reminders of the passing storm in puddles, and wet things.  We made it safely to where we were going.

As I was driving through it, I kept thinking about how appropriate it was to be in that storm today.  How it felt like a metaphor for my day.  It started with picking out a wheelchair for Shilo.  It needed to happen.  We're so glad we did it.  But, it was sort of like a light rain.  Not horrible.  You know it's good for the plants.  But, it still feels a little less than ideal when you have to deal with it.
Shilo totally rocked it though.  She quickly figured out forwards and backwards, and we got excited about the independence this could bring to her.  There was a half of a rainbow, looming overhead after this storm.

But, the next appointment felt like the downpour.  We sat in the neurosurgeon's office discussing what releasing Asher's tethered spinal cord would entail.  It felt like too much.  I could barely see, and was trying to navigate slowly.  In the end, it's also good for the plants.  But, it also can bring potentials with it that aren't as great.  Things like lightning that can harm.  Flash flooding.  Slick roadways.  So, we move ahead, cautiously.
For now, we are awaiting an appointment with cardiology to give clearance for the surgery.  But, in the near future, the doctor will move bone, open up the membrane at the bottom of the spinal cord that contains spinal fluid, and remove the lipoma from his spinal cord.  She will sew it back up, and then Asher will be required to lay flat for at least 24 hours.  She's done this a million times.  She's great at it.  This is our first time.  And, there are risk.
So for now, we cautiously head into this next storm.  The other side should be blue skies.  Fluffy clouds.  Puddles to jump in.  But, right now, we're driving slow with our headlights on.  We've driven through a lot of storms.  This just happens to be then next one.

Tuesday, June 28, 2016

Anxious joy.

It's bedtime.  I stand next to Asher's crib, holding him as he snuggles against my shoulder and hugs me.  I slowly rub his back, and drink in his smell before laying him down.  The moment is pure joy.
The two littles are napping.  Abigail curls up against me on the couch.  We sit together watching something on television, or reading together.  I kiss her forehead and tell her how much I love being her mama.  The moment is pure joy.
Shilo crawls away from me, giggling, turns, and signs again.  I tickle her, and blow on her belly.  She laughs uncontrollably causing me to laugh just as hard.  Then, we start over again. The moment is pure joy.

And, in each of these moments the joy is mixed with an intense amount of anxiety.  It's simultaneously life giving, and panic inducing.  All of the things that can go wrong flow through my head at the same time, bidding me not to love so much.  To protect myself.  Think of all the things in the world that could possibly go wrong, taking away these sort of moments.

I fight it.  I'm allowed to feel joy.  I don't have to pair it with anxiety.  I can just love the moment.  If something did happen, I would want to remember these moments.  I would want them to be imbedded so deeply that I can feel them.  The weight of Asher on my shoulder, Abigail curved against my side, Shilo's little body shaking as she giggles. 

I'm learning to love the moments, and quietly shush the fears that want to drown out the joy.  There are days where the fears will win.  Days filled with appointments, or bad news, that I allow myself to research, lament, and grieve.  But, I don't want these things to win.  I want joy to win in the moment to moment things each day. 

Wednesday, June 22, 2016

c-sections or, when your child had been cut out of you.

in just a few days, 18 months will have passed since the day a doctor cut open my abdomen and uterus to pull my son out.  the act saved my son's life.  while his heart rate had started to drop with contractions, more importantly, we had no idea that his two vessel cord had very small amounts of Wharton's jelly around it.  this is the substance that keeps the umbilical cord from collapsing, twisting, etc. so that it stays open supplying oxygen and nutrients.  if Asher had been born vaginally, it's very likely that he would have suffered brain damage and possibly even have died as a result of this. it's the reason his heart rate was dropping during contractions.  as it is, we're pretty thankful he didn't pass away in utero.

but, that's not entirely what i'm here to talk about it.  C-sections are often seen as the easy way out.  no work. no pushing.  you get a spinal block so you don't feel the contractions.  it's like you didn't even really experience birth.
there are reason upon reason people have a C-section.  some are medically necessary.  some are by choice.  not a single one of them gets my vote of disapproval.  i'm learning that the best thing we can do is support other people's decisions, even if they're different from ours. even if from the outside, they make absolutely no sense, at all.
i'm not sad, at this point, that I had a C-section.  it was necessary.  it happened.  my son is alive, and doing great. 
but, let me tell you a few things about my experience so those who think that delivering vaginally is somehow better, can possibly empathize.
some people have to be put completely under for a C-section.  my epidural, and then spinal block only worked on half of my body.  I missed my son's first cries.  I don't even have a video of it because things happened in an emergency fashion.  I didn't get to see him at all until 8 hours after he was born.  then, I was wheeled to the nicu where I got to look at him and touch him for a few minutes before going back to my room, because one of the many meds I was on made me unable to walk, stand, or stay awake for long periods of time..
I woke up from surgery, on my abdomen, to someone pushing on my abdomen.  it's probably the closest I've ever come to punching someone.  for me, I couldn't have Tylenol because my liver was failing, narcotics because I had, had a spinal block (that didn't work), and ibuprofen because of one of the other meds I was on.  I woke up from abdominal surgery with NO pain control on board, and someone pushing on me. 
getting in and out of my hospital bed, literally, required me to sit the bed up, and still took me at least five minutes because of the pain.  coughing required holding myself, and bending over.  and, when you've been intubated, you cough. 
I couldn't lift anything over ten pounds for six weeks.  at this time, I had a 25 pound three year old who couldn't walk, or climb, and a two story house.  so for the next six weeks, I had to have someone home with me at all times to help me care for little.  while i'm SO thankful to the friends who stepped up and sat with us, it was hard on the days that I wanted to just spend time figuring out breast feeding, and being a mother of three all by myself.
there is not a day that goes by that i don't see my scar.  when i go to the bathroom.  when i shower.  when i change clothes.  there it is.  the reminder that my son was cut out of me.  i can physically run my fingers over the place, and feel where the scalpel was.

but, the real kicker, for me, is that almost every day, for eighteen months, I've continued to have pain.  I've had growing issues, and am amidst appointments and imaging.  i likely have adhesions-a type of scar tissue that can happen with abdominal surgeries, and it's likely bad enough that i'll have to have something done.  sometimes, when i cough or sneeze, i still have to put counter pressure on my scar to keep the pain at bay.

i'm not looking for a badge of courage for the way my son came into the world.  i'm not looking for sympathy because of everything that went wrong.  what i'm looking for is people to just walk along side and encourage others on their journey.  everyone's journey can be different, and still good.  it can be different, and still right.  it can be different and still beautiful.
also, C-sections aren't an easy way out.