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. 

 

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. 

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. 

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.'

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.

a little night before poem.

'twas the night before appointments and all through the house, 

the parents could be seen, scurrying about
the clothes were all laid out for the morning ahead,

in hopes that they could all have a few extra minutes, to rest in bed.

the children were nestled early in their bed,

because early mornings make for grumpy heads.
papa was busy filling cars up with gas,
while mama made food to save them some cash.

papa was preparing to take big, one way,
an appointment that could make, for a great day.
a follow up from last week, nut challenge 2,

that could give us clearance to feed her cashew.

mama packing up medicine and food,
to take little in hopes of hearing something good.
her third mri, something we've gotten used to,
hours in a small room trying to entertain with peek-a-boo.

but alas, things were done, packed, ready to go,
parents went to bed, lights turned down low.
papa feel asleep, while mama laid there, alone
unable to dream, fear of the unknown.

friday, you suck.

yesterday, i wrote a post about my oldest daughter's ridiculous affinity for eating things she shouldn't.  like glass.  and our e.r. trip.  but wouldn't you know, if one has something, the other tries to outdo.  so yesterday was a two e.r. trip (sort of three, but not quite), one ambulance transport, mama needs a relaxing adult beverage sort of day.
child #2, aka, little, had a huge cluster of seizures.   after dinner, they started.  i called a nurse on call.  they said take her in.  the e.r. locally gave her a second med to stop the seizures, and after a bit we were discharged.  we walked out of the e.r., and shilo promptly had six seizures (this is where they sort of three comes in since we had to be re-admitted to the e.r.).  the girl is starting to make a name for herself with post-discharge seizures.
so we walk back in, they take us back, and the doctor says they are admitting.  i would have been surprised if they had kept us since they aren't equipped for things like video eeg or even kids as complex as shilo (and i say that knowing that she is not nearly as complex as many other kids i know).  so we get told we are being transferred via ambulance to our new neuro's children's hospital.  they are keeping us so they can give her another med to help stop the seizures.
while there were lots of frustrating things about this specific trip, we will focus on the good for now, including that fact that while we were at said children's hospital, we saw her actual neurologist. so we got to talk to someone who already knew her history, and my thoughts on treatment.  we increased her dose of new med, and we are now home.
i honestly don't have high hopes of this being the answer either because this is what she did on her first med: responded well for the first little bit, and then just had progressively more and more seizures until we switched meds.  my kid had around 100 seizures between 6:30 last night, and 1 a.m. this morning. it's slightly frustrating, and mostly scary to watch them as a parent; there's nothing you can do.
i'm glad it's saturday though.  i can't think of a friday that was more eventful than that one, in my entire life.  little is sleeping now, and we haven't seen any seizures since 1 a.m.  i plan on going to bed very early since we arrived at the second hospital and got settled in at 3 a.m.  and i plan on partaking of my adult beverage privelage tonight as well.