ebenezer.

my girls have a flare for the dramatic.  some kids break bones or get stitches, mine eat glass, and go into seizures after bumping her head.  it was a crazy chain of events that ended with shilo scaring me more than i have ever been scared.
the brief of it is that shilo fell, hit her head, and went into seizures.  we made a trip to the e.r., and all ended well.  scans were clear.  she did need the emergency med, diastat, used to stop seizures, but it worked so we'll call it a win.
i, on the other hand was left with my mind circling the same question over and over again.  'will hitting her head always trigger seizures?'  she isn't mobile in a way where she injures herself very often, right now.  and, i know that when she becomes that type of mobile, head injuries will abound.

so this afternoon, i was reading in first samuel.  in the seventh chapter, samuel takes a stone and sets it up, naming a 'Ebenezer,' which means 'stone of help,' because, 'thus far the Lord has helped me.'  i love the simplicity of it.  it doesn't feel like this profound faithful statement causing me to put samuel up on a pedestal as someone who is way better at this whole loving God thing than i am.  it was just simply that up until this point in his life, he could see that God had helped him.
and i sat and reflected. i remembered the incredible in pouring of donations so abigail could have a tumor removed.  from friends.  from strangers.  the home that was opened to us while we spent those ten days in chicago.  and the grace of the tumor not being malignant.
i remembered the friends who took abigail when shilo was born, the house that was extended to us in kentucky while we waited on the icpc paperwork so i could leave the state with shilo.
the long hospital stay where friends very willingly watched abigail, came to visit, made decorations for shilo, mowed our yard, fixed our mailbox after it was hit by a snow plow, and loved us more than we could ever know.
and in the past almost two years, since we've been home, i thought of all the times someone has showed up with a mcdonald's coke (my very unhealthy vice) when i've admitted to having a bad day.  i've thought of the kind messages, the friends who have stepped up last minute to help during smaller hospital stays, and the outpouring of love we receive quite often.
and i narrowed it down to today.  the gift of both children sleeping in.  the kind note from my husband, reminding me that i am a great mama, and that the guilt i felt over shilo falling was not necessary.  the drink on my porch to start my day off right, and remind me that i'm loved.  and the people who have called or sent messages to tell us they were praying, thinking of us, and loved us.
i reflected on the fact that for us, often times, the outpouring of God's love comes through people.
right after i read about samuel raising his Ebenezer, the neurologist office called, and confirmed my fear. some kids with epilepsy, go into seizures when they hit their heads.  this could be something we see again and again.
but, all i could think was, 'thus far the Lord has helped me.'

an open apology.

dear papa,

   we are so thankful for you, and all the hard work you do to provide for our family.  we are especially reminded of how hard you work on nights like tonight, when you are working late.  to show our appreciation we made sure there was enough dinner that you could just warm things up quickly when you got home.
  however, there was a problem tonight.  you see, someone, we don't want to single anyone out, ate all of your brussel sprouts.  we are so sorry that you didn't get any.  please forgive us.

love,
your girls.

loving brussel sprouts.

feeling a little ashamed.

on guarantees.

someone, somewhere, dreams of becoming a parent.  for the first time, for the fifth time.  they picture the beautiful baby that will expand their family.  +1  that day comes.  announcements are made.  cute pictures on facebook, an e-mail.  a phone call.  someone figures out a way to let friends and family know that there is going to be a child.
dreams are had. he will sleep peacefully during newborn photos with his little naked buns up in the air, and that cute hat on his head that was purchased on etsy.  all will be right in the world as his parents blissfully smell his head, rock him to sleep, and spend each day staring at him.
once baby is here, reality may shift a little.  new parents realize that their little just peed on mom's last clean outfit during the newborn shoot.  he doesn't sleep at night time, like a normal person.  he cries.  for no reason.  but, still, parents are in love.  baby is well cared for, and plans are made for another little.

so when people hear our stories, adoption, special needs, doctors, hospital stays, and the potential of a lifetime of parenting, they sigh.  'i could never....'   the list is endless.  and it's not worth hashing out all the reasons this phrase isn't true.  here's what i want to know.
where did you get your guarantee at?  did you purchase it somewhere?  did the ob office sell them, and i missed out on that because we adopted our kids? because from my own personal experiences, i would venture to say that just because your children are healthy now, doesn't mean that you won't someday be dealing with some of the same things i am.
i have multiple friends who were 'i could never-ing' only to find out that their child had a brain tumor, or cancer, or a genetic disorder that doesn't become apparent until slightly later in life.  and suddenly they were parenting a kid with special needs, doing long hospital stays, and facing the possibility of parenting their child for the rest of their lives.
somehow, we believe we have control over these sort of things.  the only people who those things happen to are those who didn't eat right in pregnancy, or exposed their children to something they shouldn't have, and on and on and on.  we judge our way out of anything bad ever happening to us.  we will not be faced with the possibility of a lifetime of parenting.  our children will grow up, go to college, get married, have children of their own, and we will travel and see the world after retirement.
but, here's the deal.  control is an illusion. you can hold as tight as you would like, but it's like trying to hold air.  there's nothing there to hold onto.  all you can do is take the world, one day at a time, and pray for the grace you need to face whatever lies ahead.  because husbands get cancer, and children get brain tumors, and there is a list of a million more things that could go wrong.
so please, stop telling me, and a million other people like me, that you couldn't do what i am.  stop making me a patron saint.  for today, our family is healthy.  we're doing well. and for that we are thankful.  because tomorrow holds no guarantees.  not for you.  not for us.  and the only thing different from my family and yours is that i am painfully aware of this truth.

irony.

on tuesday, january 28, i wrote this blog post about germs.  and as life would go, abigail woke up saturday morning with a respiratory virus.  fever.  coughing.  runny nose.  i spent the day praying, and hoping, and wishing that shilo wouldn't get it.
but, she did.  sunday morning was met with a fever and coughing and runny nose by both kids.  sunday night we made a trip to the e.r. because i couldn't get her temp to come down with meds.  a few hours later, all was fine again.  monday she was okay, and her fever came down with meds.  monday night she got wheezy. we started breathing treatments.  by tuesday morning, the treatments weren't changing how horrible her lungs sounded.  so i made a doctors appointment.
we left straight from the doctor's office to be admitted to the hospital with pneumonia.  her lungs sound awful. she hasn't needed oxygen at all, thankfully.  and they let us come home today since she isn't having fevers (which makes us believe that she is getting better).  we are still in the woods.  her lungs are still crackly and wheezy.
the virus.  human metapneumovirus.  hmv.  the same virus that nearly killed her two years ago.  new life goal, fine a cure for hmv.  or at very least an effective vaccination to prevent it...

please. please. please.  if you or your children are sick, stay home.

germs.

i'm hoping this post goes viral.  that's a little germ joke for you.  but, for a lot of parents, with children with medical conditions, germs aren't funny.  they're scarier than seizures, and g-tubes, and surgeries combined. and for lots of us, we get really tired of being seen as neurotic, and overprotective.  so i'm going to try to help those of you without these fears to understand.

two years ago our family was devastated by germs.  one little virus.  a virus, that for most people, is a cold. no fever.  no being laid up in bed.  just coughing and a runny nose.  shilo picked up hmv.  and it all but killed her.  literally.  as a result of it, she now can't eat by mouth.  she is delayed from spending so much time sedated, and even longer coming off of narcotics.  but none of this is the scariest part.
things like rsv and hmv, both respiratory viruses, when gotten by healthy children, and adults are a cold.  and unbeknownst to most people, can shed live virus for up to three weeks.  that's right.  three weeks.  so if you still have that cough two weeks later, but think it's probably not a big deal, it likely is for some people.
there are different levels of medically fragile-similar to terrorist threats.  two years ago, when shilo got sick, she was in the red zone.  her heart defect made it serious if she were to pick anything up.  ironically, we didn't leave the house with her.  her big sister brought it home.  last year, neither of the girls left the house during cold and flu season.  jason and i did everything separate, one person home with the kids, the other grocery shopping, running errands, and even going to church.  shilo was an orange last year due to her continued pulmonary hypertension.
and this year, we are yellow.  the combination of Down syndrome, and the permanent lung damage, from the virus she got before, means that if she gets a respiratory virus, we are at risk for pneumonia, hospitalization, and even possible intubation again.
i'm still recovering emotionally from our stay two years ago.  i'm neither being dramatic, nor dishonest when i tell you that another hospital stay like that, and i would need anxiety meds to get through it.  it was hard.  shilo has all sorts of physical scars from picc lines, heart surgery, chest tubes, and even a line put directly into her bone when she coded because they couldn't get an i.v.  i, on the other hand have scars that no one sees.
but, in all honesty, this isn't just about my children.  when you are at the store, and you are sick, you touch things that i have to touch.  and so does the mother who's child is still in the red zone.  your sick germs are shared through things like grocery carts, door handles, touching food and putting it back, and so on and so forth.  and if you take your sick child, well, kids are much better at sharing germs than adults even.
when you choose to go places, or take your children places, despite sickness, you are putting families at risk, and you likely don't even realize it.  i know that it's impossible to avoid all germs.  i know that sometimes you are going to go somewhere, get home, and a half hour later your kids going to spike a fever out of nowhere.  i'm a mom.  i've experienced those things.
but, as the mother of a child who is still medically fragile, please be considerate.  if one of your kids is sick, and the other seems fine, remember that illness can lurk silently inside, still being contagious, well before symptoms.  if you like touching babies in stores, at church, or anywhere, please ask first.  i get so tired of the back up and repulsive looks when i ask people not to touch my kid.  and if you are sick, stay home.  if your child has a snotty nose, stay home.  don't send children back to school, or take them to ballet, or story time, or even the store, until they have been fever free for 24 hours.  give that antibiotic the full 48 hours to work before you are around other people.
i know being stuck at home stinks.  believe me, i spent four months stuck in my house last year.  it sucks. but, i promise you that, that, was way less horrible than being stuck in the hospital for three months.  it's truly selfish to think that your few days of stir crazy trump the health of those that are vulnerable.

what a simple 'cold' did to my little.  

seizures.

little has been rocking out, seizure free, for multiple months now.  and, like always, i have been holding my breath as a result.  waiting.  waiting.  and, it happened.  i think at this point it's just something we've accepted as part of our life cycle.  seizures are controlled.  shilo has seizures.  meds are increased or changed.  start over again.

yesterday morning, shilo looked like this.

unable to hold up her head.  eyes are droopy.  a tell tale sign that sometime in the night she had seizures.  sometimes they continue through the morning and are accompanied with vomiting.  sometimes we just know she had them, but don't actually see any more.  yesterday we didn't see any more.  but, her head stays like this, and her eyes often drift in different directions until she looks like this for a while.

when she wakes up, she is never quite fully herself, but she can hold her head up right, and her eyes aren't going in two different directions.  naps do that for me too.  it takes her about twenty four hours to get back to herself again.  but, that doesn't mean our afternoon wasn't full of fun things.

 because seizures are best followed up by eating cheese puffs, and smearing them in your hair.

new labels.

the battles had been many that day.  i was out of patience.  my voice, my reactions, became louder, and angrier with each outburst.  this time i carried her up the steps as she flailed and screamed.  i put her in her room and shut the door.  i began to walk down the steps, sat down, and just started sobbing.
i never wanted to be a parent who yelled.  especially not as much as i do.  what had happened to me?  those first few years with her were so easy.  she was compliant.  she was loving.  and now it seems that more often than not, she is a screaming, crying, mess.  what did i do wrong?
a few minutes later i heard her door open.  she sat down next to me on the steps, and laid her head on my arm.  'sorry mama, for my fit and my bad attitude.'  that, that's the little girl i know.  the one who lives life full of passion.  the little girl who wants to be a doctor so she can help people.  the one who rushes to her sister's side as soon as anyone comes close to her, and has to know what the doctors are doing to her sister when we go to appointments.  she's in there.

in our world we know what constitutes a big deal.  we don't freak out too much.  we embrace and love quirky.  our girls are healthy.  they have disorders.  they have medical things that hang over our heads.  but, in a world full of bigger things, harder things, and scarier things, these things are very small.  it's important to know this, and to remember this.

but, also in our world, i was at a point where i felt completely at a loss for how to parent well.  the things that used to work, no longer did.  and after multiple months of battles with my big, i sent our family doctor an e-mail sharing what was going on.  she set up an appointment with a neuro-developmental doctor.  and we waited.
i researched, talked, and learned a lout about sensory integration disorder (or sensory processing disorder) in the meantime.  i filled out some paperwork through the center where big was getting speech therapy, and got a call back that she definitely met the criteria.  so i studied her more, read more, and tried to figure out her quirks.
she is a sensory seeker.  she needs to jump, chew, touch, squeeze, move, swing, anything that gives her senses lots of input.  so we have worked hard to do this.  things got better.  not great.  not perfect.  but better.
and tuesday, we saw the new doctor.  and i shared our concerns, our thoughts, our desire to help her, and us.  there was an eval before he came in to see us.  and then he sat, and listened to me for five minutes.  he was talking, looked at me, and said, 'ive been in the room for five minutes.  she hasn't stopped moving yet.  i don't doubt the sensory stuff.  the signs are there.  but, your daughter has adhd.
nothing changed from the moment before he said, until the moment after, with abigail.  she was the exact same kid.  she isn't harder now because she has a new label.  she isn't less capable of learning.  part of the reason we chose to home school her is because we knew if we sent her to kindergarten that this would come up, and we didn't want to medicate her.
but, there was that moment where things were confirmed.  and i felt a little sad for abigail.  because the label comes with a stigma.  she doesn't even know that this label exist yet. she definitely doesn't know she has this label. i hesitated to share it publicly because of the stigma.
i want to be an advocate though.  i want to advocate that my daughter's hard wiring in her brain being different does not make her defective.  it makes her creative.  energetic.  full of life.  and yes, sometimes it makes her defiant.  we know that we cannot allow the behavior issues to disrupt life everyday.  so we are implementing some changes.  we are seeking the help we need to know how to best parent her.  we are researching dietary and natural things that might help us along the way.  and, for now, we are foregoing any medicine.
we love our full of life big.  we love how much energy she brings to everything...even if papa says, 'taking a regular, smiling picture of her is like trying to take a picture of bigfoot.'