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.

theives.

there are some lines from a song i love that ring true, today.

'there's the presence of thieves, who only want, to rob you blind.
they steal away, innocence and peace...'

years ago, we sat in a doctor's office.  i had worried myself into feeling like we should see a geneticist.  what i had assumed was the issue, was not.  but, in some horrible way my fears were validated.  there was something more going on.  and so was the diagnoses of NF.  and the year that followed, i regret.  i regret the amount of time i focused on limitations and what if's instead of my daughter.  i regret that i became so obsessed with checking for tumors that i could no longer be the one who bathed my child.  i missed out on joy.  innocence. peace.  it was stolen from me when i focused on the thief.

then, maybe consciously, maybe not, i jumped in a second time already knowing things so that i could avoid shock.  nobody was going to get me with a 'hey, by the way, she's got this going on.'  but, we still ended up surprised.  i handled it better though.  and i didn't try to will away the delays.  i just accepted them for what they were.  sure, i would love for my stubborn little to stand up and walk already, but i'm not anxious about it.

and, today, i am fighting those thieves again.  the words on their own seem small.  there's this small thing. and that small thing.  then this.  then that.  separately, they're no big deal.  then my head goes through the list, one after another.  my heart starts pounding.  my brain whispers over and over, 'there's something more. something bigger.'  but, i fight.  i fight with all i am.  'maybe. maybe there is something more.  but, i'll worry about that on the day we know.  today, i'm going to dance.  i'm going to read stories.  i'm going to laugh at his little tongue play.  i'm going to smile at how he is able to find tags on the inside of my shirt seem when he's nursing, or on toys, or even the stroller. i won't let you take from me that which i can't get back.'

it's hard.  when you've lived in a world full of fears coming true, the thief known exactly how to get to you. he'll take today from you any way he can. 
but, i will fight.  i will fight by not reading the list of milestones he should have met.  i will fight by not comparing him to other babies his age (or younger).  i will fight by celebrating what he is doing.  i will fight by presenting my fears to the Truth, over and over.  i'll let Truth deal with it.  Truth conquers the thief over and over.  and, in the end, It will win.

what i want you to see.

last night, papa was gone for Thursday night practice.  like he is every Thursday.  I was making dinner.  tiny was sleeping.  big, little and I were in the kitchen dancing (and just to be completely honest, little was laughing at my singing).  it was a moment that I felt that, 'this is the kind of mom I pictured myself being. dancing in the kitchen while I make dinner.;
my mind quickly reminded me of all of the things I was falling short on in that moment.  my house was a wreck.  books covered the floor of the dining room.  toys all over in the den and kitchen floor.  dirty clothes on the bathroom floor.  dishes all over the counter.  both the kitchen and dining room table needed washed.  there were  multiple piles of papers in both rooms as well.  and to top it all off, my kids were going to be eating cheesy noodles (box mix macaroni and cheese, which I validate because I buy the high end organic stuff) for the fourth time this week.
later I found myself sitting on the closed toilet, nursing tiny, while little went potty, and big was swinging on her indoor swing that hangs in the bathroom doorway. 
little was doing acrobatics and signing 'let it go' in between, while big was standing on the swing and talking at me about her birthday party (that isn't for another six months) and all the things that would be happening. I was truly not taking in anything big was saying, which was causing her great frustration when she would ask a question and then have to repeat herself. also as was bound to happen, little fell off of her toilet, it flipped upside down and, hooray, she had gone potty.
it struck me that if I were to share these moments with others via some sort of social networking sight, I had two ways of presenting it.  one made me look really good.  the other made me look not so great.  neither would be a lie.
they were both true.  I was doing great.  there were things I could do better.  there was lots of fun.  there was lots of chaos. I love being a mom.  I want a break from my kids. 
there are those people who only share one half of these stories all the time.  those moms who show their pinterest projects, and smiling kids, and the dancing in the kitchen moments. clearly they have it all together, and parenting is a breeze.
then there are those who share how they can't get their kids to pick up, or eat healthy, or even to sit on the potty, yet alone pee in it and spill it everywhere.  clearly they are failing, and parenting is really hard.

i hope that my children remember and drink in the memories of dancing in the kitchen.  i also hope they remember that our house wasn't always neat.  we have fun.  we laugh.  we get frustrated and raise our voices a few levels higher than we want to.  we say sorry.  we forgive each other.  and, we do it all over the next day.  parenting is great. and hard. and great.  it's because it's full of interactions between humans.  and, if i can do anything well, it will be to teach them to give themselves grace for the moments that i might not want you to see on facebook.

drowning.

i'm swimming.

most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


 

but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

broken.

most of you who read this blog probably know, or have figured out that i'm a Christian.  with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking.  some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs.  i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little.  and big's disabilities are far less obvious.  however, I wanted to share a story.  I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.

a few weeks ago I was at church.  shilo had been in her gait trainer during music dancing a little, and I had just taken her out.  when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo.  I had never talked to this man before, but knew a little bit of who he was.  I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all.  the whole thing lasted only a few moments, and I don't even remember what he specifically prayed.  I do know that it wasn't for her to be healed.  and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking.  I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.

I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard.  but, there are also hard things about the disorders that are obvious.  many people tell me they are so sorry when they see that shilo has Ds.  they see her as broken.  as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next.  I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too.  but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level.  her almond shaped eyes give her away.

my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken.  the anger I struggle with.  the fact that I often don't sleep well.  my anxiety.  oh my word the anxiety.    there are so many things about me that aren't up to par with most of the rest of the world.  but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in.  my goal, is for the world to see her as whole.  complete.  no more broken than any of the rest of us.  most days, my experience is that she's less broken.  she is content.  she is joyful.  she works hard.  she is determined.  she is not easily swayed by others reactions.  she is forgiving.  she loves big.