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



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!

understanding hearing loss.

imagine your child is riding her bike.  she somehow manages to fall at just the right angle, and it becomes obvious immediately that she has broken her leg.  you take her to the doctor, have x-rays done, and wait to hear how bad it is, how long you will need a cast, and if any surgery will be needed.  the doctor walks in and says, 'it's broken.  i'm just going to go ahead an amputate it.'  you're thinking, wait, is that necessary?  would a cast not work?  pins or screws?  having it set?  is this really our only option?
it's pretty unusual for a child who breaks their leg to need it amputated, although not completely out of the realm of possiblity.  and if a doctor suggested this as the first option you would likely want a second opinion.  i'm going to compare this to my youngest daughter being deaf.  whenever someone inquires about her hearing aid, or finds out she's deaf, i immediately get a 'oh, are you going to do cochlear implants?'  of 'you should get those implant things so she can hear.  have you ever seen those youtube videos where a child hears for the first time?  it's just amazing!'
i don't expect the general population to have information on hearing loss and how it's treated.  i only knew basics before shilo came along.  so i'm going to try to explain why cochlear implants do not work for everyone, and why shilo has a baha.
first of all there are tons of little components that make up your inner ear, and aid in hearing.  you have an ear drum, some tiny bones, air and space, and a cochlea.  the first few things take the noise in and send it to the cochlea, which is hooked to a nerve.  that nerve sends the signal to your brain to tell you what you are hearing.  if any of these things isn't developed correctly, or does not work, your hearing is affected.  even an ear infection causing fluid to build up behind the ear drum can cause temporary hearing loss.
there are three different types of hearing loss:
conductive hearing loss:  Conductive hearing loss occurs when sound is not conducted efficiently through the outer earcanal to the eardrum and the tiny bones (ossicles) of the middle ear. Conductive hearing loss usually involves a reduction in sound level or the ability to hear faint sounds. This type of hearing loss can often be corrected medically or surgically. 
sensioneural hearing loss:  Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.
mixed hearing loss: Sometimes a conductive hearing loss occurs in combination with a sensorineural hearing loss(SNHL). In other words, there may be damage in the outer or middle ear and in the inner ear(cochlea) or auditory nerve. When this occurs, the hearing loss is referred to as a mixed hearing loss.
all these definitions were taken from this website.
and now the basics of a cochlear implant.  a c.i. actually takes the place of your cochlea.  in essence the doctor goes in and kills the cochlea to implant an artificial one.  so like a prosthetic limb that an amputee might wear.
so someone with a conductive hearing loss doesn't need a cochlear implant.  there's no reason to kill their cochlea since it is working just fine.  someone with sensioneural hearing loss could benefit from a cochlear implant.  and someone with mixed may or may not benefit from an implant.
shilo has mixed hearing loss.  both of her cochleas work perfectly fine.  she has either tissue or fluid in the inner ear where there should be space.  and her snhl is past the cochlea and on her auditory nerves.  so killing her cochlea would be like amputating a leg that would work just fine with a few pins to help the bones do what they should.
shilo uses (and i say that term loosely, because she's not a very big fan of wearing her hearing aid at the time) what is called a bone anchored hearing aid, on a soft band.  (they don't actually implant the anchors until children are at least five.  fda regulations).  so what her hearing aid does is bypass the outer ear, and send the  sound through her skull bone directly to her cochlea.  even a hearing person and put this on their head and 'hear' through it.  it's a pretty spectacular piece of equipment.  we have a friend, baby aria, who uses a baha as well.  her hearing level is normal with it.  shilo's hearing levels will never be normal because of the damage to the auditory nerves.  so even with the baha on she is still only hearing at a moderate level.
so the next time you talk to someone, and find out their child is deaf or hearing impaired, please don't encourage them to have an immediate amputation.  parents are being bombarded by so many different types of hearing aids, as well as trying to decide whether they want to use sign or an oral method (or both).  they have lots of different professionals telling them different things already.  i personally, am not even a fan of the 'i'm so sorry.'  we aren't that sad about her being deaf.  she's an awesome little girl.  she can feel music.  she LOVES signing.  LOVES it.  she has multiple words she signs regularly (mama was her first).  she understands so much more than she can sign back to us.  a hearing person feels like being deaf means you are missing out.  since she's never been able to hear, she isn't missing anything.  her world is what it always has been.  and we accept her just exactly the way she is.

why would we want to change her?

How do I say thank you?

Around this time last year I took Abigail potty one day and noticed a dark area on her right leg. I immediately asked Jason if he had ever noticed it before and he said he wasn't sure. So I filed it away under 'things to keep an eye on.' And keep an eye I did. When a small mass turned up underneath the area I felt like I knew what we were dealing with. And when we started seeing pain and itching, I knew before we ever even made that drive to have an MRI done that there was a tumor in my daughter's leg. This is the nature of NF.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.




The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)

Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.