Posing.

These are a few pictures from our vacation that I love.  Playing in the sand. Kite flying.  Wearing her puddle jumper and goggles despite the fact that she never went anywhere deep enough to need either in the ocean.  They're real.  They make me smile as I remember how fun it was.  How relaxing it felt.

While we were there one night, a family arrived at the beach.  All of them were wearing nice clothes. The mother walked into the water, and started posing, as the father took pictures with his phone, while giving instructions of how to turn to get her hair to flow more, and her chin in just the right position. I continued to play with Abigail while taking in the family.  They did rehearsed videos of walking and holding hands, acting surprised when a shell was given, and numerous takes of each person to get just the right angle and picture.  All on cell phones-so they weren't professional pictures.  I have no idea what their reason was.  Nor, am I saying that there may not have been a legitimate reason to do this.  It just struck me as intriguing as I watched all of the other families capturing pictures as their children ran into the ocean with boogie boards, built sand castles, and looked for shells and creatures on the beach.  I couldn't figure out why they would need to work so hard to capture perfect pictures when the beach is an amazing way to make perfect memories.  The whole thing has stuck with me.

The past weeks have been filled with appointments.  Mostly for Tiny.  Although, Big's MRI and oncology follow up for her glioma was in there as well.  Overall the appointments weren't horrible.  But, we've been bombarded with information.  Some suspected.  Some a complete surprise.  And, as we officially started the process of genetic testing for Tiny today, I recalled all of the times people have said, 'well, he looks normal.' 
My thoughts skipped to the church we belong to.  It's full of people who are a hot mess (spoiler alert, all churches are).  But, they're all so willing to share their mess.  It's a beautiful image of what the body of Christ is to be.  So many places, everyone looks the same.  They talk the same.  They pepper their language with how great God is.  All the time. 
But, the body isn't made up of parts that have it all together.  It's made up of my daughter with an extra chromosome who uses a wheelchair.  It's made of people who have been addicted.  People who have had abortions.  People who hate others.  People who need glasses to see clearly.  When all those parts connect, and work together, it's just a big jumble of imperfect.  There are hard conversations about forgetting to make things accessible for people who use wheelchairs.  There are sometimes hurtful things said to one another.  Everyone shares in the mess, the same way our physical bodies sometimes have parts that don't work well with others. 
There are other places like ours.  I'm sure of it.  There are also lots of places that look like the family at the beach.  The ones who say, 'well he looks normal.'  As if saying, 'I know we are all imperfect.  But, at least we can pass for having it all together.'  It's a badge.  Only post the great pictures.  The uplifting stories.  If you share something hard in your life, make sure to follow it with, 'but, I know that God is good.'

But, we want so badly to look normal.  Churches.  Families.  Individuals.  We pose.  We take the same picture adjusting the angle over and over until we have the ones to post that looks just right.

The truth, we're all broken.  When we go to the beach, we get sand in our bathing suits.  And, if you live here for long, you are going to experience hard things that make you question things about faith, and God, and those around you.  You're going to realize that the people who try the hardest to look 'normal' are just as broken as the one who is noticeably a mess.

We're a mess.  Our beach pictures.  Our home.  Our children's chromosomes.  Our faith.  And, if sharing our journey, honestly, helps one other person be brave, it's worth it.  I have found it's much more fun to just enjoy the beach than to dress up and pose.  Sure, there's more sand, and possible sunburn.  But, the memories are pretty amazing.
 

Advent

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. 

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.  

Dragons.

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.

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



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.

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.

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. 

 

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
C-cardiac
TE-trachea-esophageal fistula
R-renal
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. 

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.