Tuesday, December 20, 2016


Advent.  The season of looking forward.  Expectation.  Excitement.  Anticipation. Celebrating.

No matter where I am in life, it always feels like there is this relentless hope that accompanies advent.  Remembering that Christ came like He said He would.  Hoping for His return.  The whisper of reconciliation that makes people believe that things might just be set right at any moment.

The next few weeks are calm for us.  The appointments are done for the year.  The presents are (mostly) bought.  School is on break.  We get to sleep later.  Tiny turns two. We see family.
But, January is working to overshadow.  It looms, just in the distance, reminding me of all the lingering questions.  The neuro-surgeon consult for Shilo.  The endocrinology consult for Asher.  The MRI and oncologist appointment for Abigail.  And, once that's over, we start February with Asher's second Mehta casting. 

For the past year, medical stuff has been relentless.  It's been a tag team of appointments, and new diagnoses, surgeries, and big questions. It's been a year of unexplained chronic bowel issues for one child, and new bowel issues for another.  Literally, my days are filled with a lot of shit.  And, despite the extra stuff, the regular things didn't show mercy.  We still had therapies.  And, homework.  Dishes. Laundry.  My kids still felt like they needed meals and snacks.  Books read, and snuggles. 

My whole being said enough months ago, and yet, there was more.  And, I didn't even realize how far I had gone into the darkness, until I sat in my house one Friday, desperately planning a way out.  So I nervously, and bravely, sat in my doctor's office the following Monday.  She, being the incredible doctor, and person that she is, was compassionate and empathetic.  And, we talked over medicine.

Last night, big and I went shopping together for a few things.  We spent the whole time laughing really hard.  People staring at us sort of laughter.  It had been a long time since I had laughed like that.  It was beautiful.  And, freeing.  It reminded me of who I was before.  I'm not sure when before was.  A specific day.  Or week.  A month.  An event.  But, there was a before.  One where I wasn't enveloped in darkness.  I'd forgotten that it existed because it had gone away so slowly, and so fast.  Like time seems to do.

So, as January tries hard to surround me, as future works to draw me back into a dark place, I finally have help.  I have an advent in my life.  It brings with it hope and the belief that things may just all be okay at any moment. 

Wednesday, October 5, 2016


Words are kind of my thing.  I have always loved reading them.  I've always been sensitive to harsh ones.  And, I have always clung to the ones that I find beautiful, uplifting, and kind.  There's nothing that lets me know I'm loved like words.  These are all the words that are sitting next to my bed right now that people wrote about me.  Some of them likely don't even know I've hung onto them and read them over and over.

One of the many things I have anxiety about is going places with my children without my husband.  It isn't because of the utter chaos it is going to bring.  That's just how our family does life.  It's because of all the words, the fear of words, and the knowledge that strangers are going to say things to us.  Most of those things are innocuous, although sometimes slightly annoying.  Like when I'm carrying both of the younger children into a store because I can't push Shilo's wheelchair and a cart at the same time and someone says, 'wow, you have your hands full.'  Yes, I literally have my hands full.  Thanks. 
But, often, they are not.  I have been called a whore multiple times because I have children of different races.  People ask things about adoption that aren't appropriate such as, 'why didn't her mom want her?'  Or, people say things like, 'What's wrong with her?' about Shilo.  Or the time a man tried to preach the gospel to me so he could invite me and my colored child to his Bible study for colored people.  He really liked colored people, but didn't tolerate the loudness and foul language they use. Or even seeing someone I know from the past who says, 'you have ANOTHER kid?'  Or, the woman who explained over and over to me one time, 'I just wouldn't be able to love somebody else's kid.  Don't worry, you'll have a kid of your own someday.'   
As a result, before I go out into public places by myself with my kids, I have to talk myself through what to do if others use words that are hurtful.  It might sound silly, but the times I've been affronted, I have been caught off guard, and didn't respond.  So I go through scenarios.  Words.  Responses.  I edit and re-edit them so my children will hear and see that it is okay to not allow people to treat us wrongly, and do it with grace.  I take deep breaths.
When I'm out, I'm so caught up with caring for my kids, 'kind and gentle hands' 'I need you to leave the groceries in the cart' 'you need to tell Shilo no if you don't like her touching you' 'stop chewing on (grossest thing you could ever find) it's not food.'   And, I'm never ready for the words.  Never. 
As much as I want to forget them, as I want to give people the benefit of the doubt, they stick with me.  They embed in my heart. They exacerbate my anxiety.  So much so that I recently realized that I've just stopped going places very often.  It's too much.  It's physically hard to do things with a very active toddler and a child in a wheelchair.  The lifting, carrying, getting the chair in and out, it wears a girl out.  But, not so much so that it might keep me from doing things.
The words though, they have done it.  They have made me not want to go new places, or do new things. They have me avoiding storytimes because of a specific person, and one of the library branches because of someone who works there. That's not okay.  Please think before you judge.  And, if by some chance you make a snap judgment, as we're all prone to do, keep it in your head.  Leave it there.  Feel free to go on believing it if you want.  But, whatever you do, do not say it out loud to the person you're judging. It's your issue.  Not theirs.  I promise you, from experience, they have enough of their own.

Sunday, October 2, 2016

My drug of choice.

I took this self vow that I would live more honestly.  If someone said, 'How are you' I would respond honestly.  Most days that means, 'I'm struggling.'  I would tell people I have anxiety.  I would show people our home, even if it's messy.  I don't want it to be for pity.  It's not pitiful.  It's life, and sometimes it's really hard.
This new habit hasn't been without a lot of heartbreak.  Lots of people love the realness.  They appreciate hearing that other people are struggling.  But, some people see the opening of vulnerability as an easy in.  It's not always intentional.  But, when I share my struggles and someone responds with how it's a spiritual deficit, a parenting deficit, a spousal deficit, and just about every other area of my life, it makes one want to retreat.  Don't get me wrong.  I am deficient in all those areas.  I could make you a whole freaking list of where I fall short.  But, my hope in being real isn't to shine light on my sucking at things.  It's to shine light on how everyone feels not good enough.  And, if we can stand together and say, 'yeah, me too' our shortcomings are much less scary.  There's hope that maybe we aren't as big of failures as we sometimes feel.

This week we found out that Asher's scoliosis has gotten worse and we will begin casting to try to straighten his compensatory curve, and prevent his congenital curve from worsening as quickly to prolong surgery.  We found out that he does indeed have a bar opposite his hemi vertebra guaranteeing both that the congenital curve will get worse, and that he will need surgery to correct it at some point.  I LOVE having a definitive.  I hate what it is.
When he is casted he can not take a bath, or be in water.  I'm glad we're starting it going into the winter.  But, the boy loves baths.  The two weeks prior to casting are fall break so we're planning a trip to an indoor water park for a few days (the mid-west in October isn't conducive to outdoor water play).  We like to try to do things to balance and redeem the hard. 

I've been in avoidance mode since the appointment.  Constantly checking facebook (despite the fact that I'm trying to take a break from it), e-mail, reading articles, anything I could find to fill my mind with fluffy things.  I'm not interested in the countdown in my head.
So this evening, as I was making dinner, I wasn't that surprised to find myself fighting tears.  I know where it ends every time.  I don't know why I don't just allow myself to process it, work through it, and move forward.  Everyone in my home would benefit from me changing this habit.  I don't get much done.  I don't spend much time actually focused on my kids.  I just escape.  Distraction is my drug of choice.  It numbs things.  It's free.  Nobody else knows. 

 It, like other drugs, is temporary.  It doesn't actually change reality.  Eventually, I have to lay down in my bed, and all the things are still there, flooding my head.  Vying for my attention.  Preventing me from the escape I'm hoping for.  Just closing my eyes for some hours.  So I turn on mindless television, and fall asleep to that. 
It works for a few days.  But, at some point I'm doing something that demands me to not have a screen in front of me.  And, I lose it.  Fall apart.  I desperately clamor for a way to go back to numb.  But, it's too late.  So I wade in.  It's deep.  Thick.  Hard to make it through.  And, it's all just compounded with all the other shit that was already there.  Perhaps some day I'll be strong enough to just jump in from the beginning.  I'll join all the other brave people getting dirty.  I'm there today.  The people with me are much kinder than those voices that tell me I can escape things.  They remind me that I'm strong, and brave, and I can do hard things.  And, I can be real about how much doing hard things sucks sometimes.  This is one of those times.  

Friday, September 23, 2016


It's hard to describe where I am right now.  On a Monday, my son had surgery on his spinal cord.  Hours later, I stood in an elevator reading the MRI report that said my daughter had an optic glioma, and two weeks to the day after that, Shilo got her wheelchair.

Six weeks and a month out, the only thing that truly affects us in our day to day is the wheelchair.  And, Shilo is doing amazingly with it.  But, something about these three events, and how they all happened together, cracked things deep inside of me.

You know how Facebook has that, 'on this day' feature? Well, it's the thing that best shows the progression of my heartache.  The early post, they're all sappy and sweet. Everything seemed like a big deal.  I posted things like, 'going to see the doctor with our bug tomorrow, feeling so nervous. Prayers are appreciated.'
But, a few years later, they're filled with the pain I lived through. Maybe others wouldn't see it. But, it's when I put on the scales.  I grabbed my dragon suit, and wore it proudly. It helped protect me from the pain of hard things. And, each time we were faced with some other horrible diagnoses, or a hospital stay, or a birth that went horribly wrong, on went that next layer.  The pain was too much, and I was determined to find a way to avoid it.

But, then the crack.  And, I watched myself become undone.  It was like the scene in 'The Voyage of the Dawn Treader' where Aslan turns Eustace from a dragon back into a boy,

But the lion told me I must undress first. . . . 
I was just going to say that I couldn’t undress because I hadn’t any clothes on when I suddenly thought that dragons are snaky sort of things and snakes can cast their skins.  Oh, of course, thought I, that’s what the lion means.  So I started scratching myself and my scales began coming off all over the place. And then I scratched a little deeper and, instead of just scales coming off here and there, my whole skin started peeling off beautifully, like it does after an illness, or as if I was a banana. In a minute or two I just stepped out of it. I could see it lying there beside me, looking rather nasty. It was a most lovely feeling. So I started to go down into the well for my bathe.
But just as I was going to put my feet into the water I looked down and saw that they were all hard and rough and wrinkled and scaly just as they had been before. Oh, that’s all right, said I, it only means I had another smaller suit on underneath the first one, and I’ll have to get out of it too. So I scratched and tore again and this under skin peeled off beautifully and out I stepped and left it lying beside the other one and went down to the well for my bathe.
Well, exactly the same thing happened again. And I thought to myself, oh dear, how ever many skins have I got to take off? For I was longing to bathe my leg. So I scratched away for the third time and got off a third skin, just like the two others, and stepped out of it. But as soon as I looked at myself in the water I knew it had been no good. . . .
“Then the lion said — but I don’t know if it spoke — You will have to let me undress you. I was afraid of his claws, I can tell you, but I was pretty nearly desperate now. So I just lay flat down on my back to let him do it.
“The very first tear he made was so deep that I thought it had gone right into my heart. And when he began pulling the skin off, it hurt worse than anything I’ve ever felt. The only thing that made me able to bear it was jut the pleasure of feeling the stuff peel off.  You know — if you’ve ever picked the scab of a sore place.  It hurts like billy-oh but it is such fun to see it coming away.”
“I know exactly what you mean,” said Edmund.
“Well, he peeled the beastly stuff right off – just as I thought I’d done it myself the other three times, only they hadn’t hurt – and there it was lying on the grass, only ever so much thicker, and darker, and more knobbly-looking than the others had been. And there was I smooth and soft as a peeled switch and smaller than I had been. Then he caught hold of me – I didn’t like that much for I was very tender underneath now that I’d no skin on — and threw me into the water. It smarted like anything but only for a moment. After that it became perfectly delicious and as soon as I started swimming and splashing I found that all the pain had gone from my arm. And then I saw why. I’d turned into a boy again. . . .”

It's one of my favorite scenes from a book. This image of God helping us to shed those ugly hard parts of ourselves. It's painful. And, raw. But, in the end, Eustace goes from being a selfish, lying, little boy, to someone others enjoy.

Right now I feel like I'm in the raw stage. Scales were ripped off as I was bombarded with one hard thing after another.  And, I'm trying to navigate things again without my protection.  All of my emotions, both good and bad are finally being felt.  And, I love it and hate it.

Something I've realized in this is that I have to write.  It's like breathing for me.  It's my way of  trying to bring beauty to our hard.  It's what I love. So I hope to be here more. And, I'll try not to let fear prevent me from hitting the publish button.

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


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


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.

Wednesday, June 15, 2016


I sat on the porch swing, reading Brene Brown, listening to crickets, seeing the fireflies light up around me, and smelling my neighbor's joint.  I put the book down, leaned back, swinging ever so gently, and closed my eyes.  I tried to turn my thoughts into coherent prayers.  All I could come up with is, 'Please show up.  Here.  In the tragedies.  In people's pain.  In me.'
And, in the days where all I read about is tragedies, and it's followed by everyone's memes about guns, and violence, and religions, and parents, I wonder how to be the person who stands on the side of love.  So I sit down and type something, hit post, and feel like it doesn't even come close to what I'm feeling.  The words are limiting.
Then, today, I wake up to another tragedy.  It plagues me all day long.  It ends with a family that will have to prepare a funeral for a little boy not much older than my own.  And, already the judgments start.  There are conversations about the parents,  and choices, and how much better we all are because nothing like that could ever happen to us.
I want to scream.  'BULL SHIT!'  Instead, I decide to rock my son before bed.  I cover him in kisses, and probably a few of my tears.  I lay him down, and watch him rubbing the tag of his blanket as his eyes droop.  And, I think of that other mom. 

I have decided that in tragedies, I'm going to take my example from Job's friends in chapter two.  They came, they sat, and they quietly grieved with him.  It was a beautiful thing.  They were literally just there.  When they started talking, offering their suggestions, telling him what he should be doing, that's when things started going poorly.  But, when they were there, it was beautiful.
I can't get to Orlando tonight to be with that mother.  Or the other mothers and fathers there preparing for funerals.  I can't go to the hospitals to be with the victims.  I'm not even sure how to be with some of the people who live in my city and are experiencing tragedies. 
But, I want to figure this out.  I want to put on my sackcloth, sit down, and just be there.  I want to mourn with all those who are mourning.  And, there are a lot right now.  Even if they'll never know some lady hundreds of miles away is sitting in her house, quietly joining in the mourning, I want to do this. 
Tonight, I will light a candle, and I will sit.  My one small flame may not make much difference.  But, then again, maybe some others will read this and choose to join me. Light a candle.  Sit.  Mourn.                                                                                                            

Tuesday, May 10, 2016

Thirty Four.

I don't know if the day was sunny. Or cold.  If the room was shared.  If things felt dingy.  I have no recollection of that day.  Yet, every year, when it comes around, I celebrate.  It was the day I became known.  I was no longer hidden.  The world now had a new little life in it. 
With each passing year, the new number causes me to contemplate things a little more.  What has happened this past year that changed me?  What have I experienced in my thirty four years that other people haven't?  What parts of me do I want to take with me into this next year?  Which ones might be better left behind?  What are the parts of me that are hidden, that need to be made known?

Each question is loaded with answers.  They range in emotion.  This year, in particular, I dreamt of my papal the night before thirty four.  He hugged me.  I miss him.  And, I'm so glad that he is now with his wife of nearly fifty years.  He missed her greatly when she left the world before him.  I hope that our love will be as deep, as wide, as strong, and as selfless as his was.  And, I add that to my list of things I want to take with me this year.  Choosing love.  In the hard moments.  In the frustrations.  In the miscommunications.  In the exhaustion of littles.  Finding time to give of myself to the man I have committed a lifetime to.

The things I want to leave behind?  Yelling.  My communication with my children is sometimes done in louder and angrier ways than I want it to be.  I'm thirty four.  I can't control them.  But, I can work to control my responses.

The things I hide.  Anxiety.  I have been working hard at being more honest with this.  And, with each new things I share, someone else thanks me.  Someone else says, 'I feel that way too, but have been too afraid to share it.'  And, the camaraderie kills the voices telling me that people will think I'm crazy. One night in particular, when we were frustrated at each other, Jason asked what I was anxious about.
'You can't be anxious about everything.'
'Picking out your clothes?'
'Yes. '  And, I shared how and why this makes me anxious.
'The weather.'  He laughed.  Because, absurd.
'Yeap.' And, I shared how and why this makes me anxious.'
This was followed by five minutes of silence.  He didn't know the depth.  The way it likes to grab a hold and whisper all the lies.  All the what if's.  All the things that have been messed up in the past.  But, so many of those things die when they're spoken out loud. They thrive on the darkness.  They grow there.  But, the moment there is light, they die a little.  The moment someone else says, 'hey, me too' they shrink back, afraid.  And, so, I will share.  I'm thirty four and I will no longer hide my anxiety.

There is more. So much more. It's been a pretty good thirty four years.  Some of the years have been overshadowed by really hard things.  Some of them I don't remember.  Lots of them are only mere moments scattered throughout my memory, waiting for new moments to join them.

I'm thirty four.

Tuesday, April 5, 2016

a healing step.

after the arrival of tiny, I had some things that I was sad about.  disappointed.  and, there was nothing I could do about most of them. 
one of the lingering ones though, was the fact that I had Asher a few days before our scheduled pregnancy shoot.  I wanted photos of me at the end of pregnancy.  I had found some really non-cliché ones that I loved, and we just wanted a few that could be thrown in with our newborn shoot.
we knew we wouldn't be doing a pregnancy again.  we made sure.  so I mulled over the idea of doing them anyway.  but it seemed so cheesy. 
and, I decided to do them.  it would be part of the process of healing for me.  so a year after our son was born, no longer pregnant, we did maternity shots.  these are a few of my favorites.

the healing process is different for everyone.  this what part of it for me.  i'm so glad we did it. 

*these photos are copyrighted*

Friday, March 25, 2016

Just, a little....

It's a phenomenon that most people probably don't fully understand.  But, I've heard it from lots of other parents.  I've heard it from spouses.  I've heard it from people themselves.  So, I know that lots of people experience it.

Doctor crushes. 

Now, let me start by saying, a doctor crush is in no way shape or form of a sexual nature.  If you are truly attracted to a doctor, that's not what I'm talking about here.  This is a whole different form of crushing. 

It can be a male or female.  Old. Young.  Attractive.  Or someone you find not so attractive.  But, whatever happened with that doctor led you to get fluttery feelings every time you see them, talk about them, or think about them. 

I have a few of them.  Doctors who have gone above and beyond. The fellow who literally made the life saving call to check Shilo's thyroid numbers when she got very sick at a few weeks old.  The developmental pediatrician who looked into issues with Abigail when she was really young and figured multiple things out. The doctor who delivered Asher.  The list goes on and on for me. 
And, a friend who's husband broke his neck felt this way about one of the doctors who cared for him.  A friend who had a mass removed from her abdomen, talks about feeling this way.  A parent who had a doctor step in and step up to prevent unnecessary interventions.  A parent who stepped up and stepped in to make certain a child got a surgery that some doctors thought wasn't needed.

I find myself thinking about these doctors.  Looking forward to the next appointment with them.  Wanting to bring them gifts, and invite them over for dinner.  I replay our conversations, and can't help but smile when I think of how they treated me, and my children. 
For a while, I thought it was just me.  And, that it was a little weird.  Until I admitted it.  Then, time after time, in conversation, someone else would describe something similar. 

So here's a public declaration for those of you who didn't know this was a thing.  And, here's a thank you to the doctors who are so great, that a phrase needed to be developed to describe the feelings they invoke.  You make the world of navigating medical stuff a little more enjoyable. 


Friday, February 19, 2016

Three for three.

When you've spent much time around the world of special needs, you learn a few things.  One of them is, people don't tend to have lots of random things going on, and none of them be connected.  There's usually an overarching diagnoses.  A genetic disorder.  Something.
So with each new thing that has come up with tiny, I have known, the day was coming when we would get our third diagnoses.  A couple of months ago, after tons of hours of researching, and reading medical journals, I came to the conclusion of what I thought it was. 
I mentioned it at our ortho appointment, and he sort of agreed he fit the criteria, but wasn't interested in diagnosing him.  It was frustrating for me because I want answers at this point.  It helps to know which way to go.  It alleviates fears of bigger things.  It makes state insurance for kids with special needs easier. 

Yesterday morning we made our second trip to the developmental pediatrician.  I made the appointment for stupid early in the morning so we could see the actual doctor.  Then, I showed up, and somehow they had made the appointment with a nurse practitioner.  I'm not a great person when sleep deprived, and I nearly fell apart.
It really turned out to be the best thing.  The n.p. we saw had seen Abigail five or so years ago.  She remembered us.  I listed our 'things we have noticed' and she immediately said, 'sounds like we should see a geneticist.'  I asked at our first appointment six months ago.  I didn't even have to ask this time.

There was lots more to it.  But, I won't wade you through all of that.  We have a diagnosis.  It will be confirmed with a geneticist.  It is what I thought it was going to be.  And, it was nice to put all of the pieces together.

So Asher's list of medical junk:  single umbilical artery, vertebrae anomalies causing congenital scoliosis, lipoma at the base of the spinal cord, genitourinary defect, hydronephrosis (this has already resolved for him, but is still included), congenital heart defect (it is very small and doesn't cause any issues), shoulder girdle weakness, clinodactyly in a couple of fingers and toes, and thumbs that tuck under.  It's possible that after a little more upcoming testing there may be more added to the list, but these are the knowns for now.

Asher has what is called VACTERL association.  It is not a genetic disorder.  It is a group of congenital defects that often occur together.  You only have to have three letters for diagnoses.  There are some other defects that can happen with it, but aren't part of the diagnostic criteria.
V-vertebrae anomalies
A-anal atresia
TE-trachea-esophageal fistula
L-limb deformities

Asher has V,C,R, and L.  Sometimes there is an S on the end, that isn't part of the diagnoses, but stands for single umbilical artery.  The genitourinary defects are sometimes linked with the A, but also not part of the actual diagnoses criteria.  And, the lipoma also isn't uncommon with all of it, but not part of the diagnostic criteria.
We will see a geneticist because sometimes there are genetic disorders with lots of these things, and they'll want to make sure nothing is being missed.  It's possible that the diagnoses could change, but it's unlikely at this point. 

Even with all of that, he is doing great.  He's a very active almost fourteen month old. He's trying to stand on his own, and has taken a few steps.  He love blueberries and oranges, black beans, and olives.  He has started to give lots of hugs and kisses voluntarily.  He smiles at everyone.  Our lives are so much better with him in them. 

Monday, February 1, 2016

Holding hope.

'that nothing grows on
 but time still goes on
 and through each life of misery
 everybody's got a hold on hope
 it's that last thing, that's holding me.'

some days, my hope lies strictly in heaven. the knowledge that all things will be made right gets me through.  everything here seems too hard. 
some days my hope lies closer to now.  that things might not always be this hard.  that here on earth, even, I might experience great things.
some days, I pour out my hopes in words to a God I still don't understand.  I step out and take that chance that maybe this will be the time the words I speak change something. but, at very least He's listening.

everyday, in our hallway, I walk by hope.  she used to sit in our kitchen window.  then on a shelf behind our couch before we moved.  and, in the midst of all the really hard things over the past years, at some point, her hand fell off.  I glued it back on.  then, she disappeared (with some help from little) behind the couch until we moved it out.  her hand was gone.  missing.  no more.
but, that other arm, still clung tightly to the balloon with the word hope.  it was held high above her head.  like she still believed there were things to hope for.  reasons to hope.

day after day, she stands there.  atop the shelf.  beneath her another tiny sign with the word hope.  the one I found when we were waiting for Abigail.  those three hard years.  and when I walk by them, I think of my friends who recently had miscarriages, who have lost littles, or who desperately want to be parents, and aren't yet.  and I stop, and plead on their behalves.  because that is hard. so very hard. and holding onto hope during that.  yeap. just all of it is hard.

and I look up at her, right above.  my sister gave her to me when we were waiting on Abigail.  but, for some reason, she doesn't remind me of the pain of waiting.  she reminds me that even with hospital stays and looming surgeries, seizures, scoliosis, and the future of tumors, that I can still hope.  I can hope in a God who will redeem all things.  i can hope that things won't always feel like i'm in a battle.  i can hope for peace.  a little girls to walk.  to find out all of the things going on with Asher.  that big's NF will continue to stay mild.  that when we walk through hard things, our marriage will remain strong.  we will learn over and over what it means to remain faithful.

in my brokenness, missing parts of me that I've tried to glue back on in hopes that other people might not notice, i'll continue to hold up my banner of hope. 

Sunday, January 3, 2016

Public School.

Ten years ago, I laid on the floor of the spare room in our house.  Crying. Praying.  Begging.  All I wanted was to be a mother.  And we waited. And waited.  And we got the phone call. Appointments.  Ultrasounds.  Visits.  Phone calls.  A night in the hospital.  There she was.  Our big.  All round and beautiful.  We fell instantly for her.  Scooped her up and fought over who got to hold her. 
Then a diagnoses.  And hard stuff.  Handing her off to a surgeon to have the tumor removed in her leg.  Getting her back.  Watching her heal.  Rejoicing with a clear follow up.  Holding my breath with each MRI that it will be the one that gives us different news.
Becoming a big sister.  Then again.  Hospital stays for them.  And more hard stuff.
All this was filled in with books, parks, story times, friends, family, laughter, frustration, parenting failures, teaching, learning, television, bike riding, fevers, hugs, cooking, cleaning, eye rolling, life.

Seven years, and four months.  This child has been part of my every day.  Tomorrow, that changes.  I'm so excited for her.  For us. And sad.  How I will miss that child.  She's a smaller version of my personality.  Eye rolls and all.  She frustrates me like nobody else can.  And she reminds me each day of getting to become a mother.  Of my failures and my successes as a parent.
Here's to sending her out on a new adventure.