Tuesday, April 5, 2016

a healing step.

after the arrival of tiny, I had some things that I was sad about.  disappointed.  and, there was nothing I could do about most of them. 
one of the lingering ones though, was the fact that I had Asher a few days before our scheduled pregnancy shoot.  I wanted photos of me at the end of pregnancy.  I had found some really non-cliché ones that I loved, and we just wanted a few that could be thrown in with our newborn shoot.
we knew we wouldn't be doing a pregnancy again.  we made sure.  so I mulled over the idea of doing them anyway.  but it seemed so cheesy. 
and, I decided to do them.  it would be part of the process of healing for me.  so a year after our son was born, no longer pregnant, we did maternity shots.  these are a few of my favorites.





the healing process is different for everyone.  this what part of it for me.  i'm so glad we did it. 

*these photos are copyrighted*

Friday, March 25, 2016

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. 

 

Friday, February 19, 2016

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. 

Monday, February 1, 2016

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. 

Sunday, January 3, 2016

Public School.

Ten years ago, I laid on the floor of the spare room in our house.  Crying. Praying.  Begging.  All I wanted was to be a mother.  And we waited. And waited.  And we got the phone call. Appointments.  Ultrasounds.  Visits.  Phone calls.  A night in the hospital.  There she was.  Our big.  All round and beautiful.  We fell instantly for her.  Scooped her up and fought over who got to hold her. 
Then a diagnoses.  And hard stuff.  Handing her off to a surgeon to have the tumor removed in her leg.  Getting her back.  Watching her heal.  Rejoicing with a clear follow up.  Holding my breath with each MRI that it will be the one that gives us different news.
Becoming a big sister.  Then again.  Hospital stays for them.  And more hard stuff.
All this was filled in with books, parks, story times, friends, family, laughter, frustration, parenting failures, teaching, learning, television, bike riding, fevers, hugs, cooking, cleaning, eye rolling, life.

Seven years, and four months.  This child has been part of my every day.  Tomorrow, that changes.  I'm so excited for her.  For us. And sad.  How I will miss that child.  She's a smaller version of my personality.  Eye rolls and all.  She frustrates me like nobody else can.  And she reminds me each day of getting to become a mother.  Of my failures and my successes as a parent.
Here's to sending her out on a new adventure.

Thursday, December 31, 2015

Resolutions.

A year ago right now, I had just been discharged after a week in the hospital.  Tiny was still inpatient, but got to move into a room with me.  We were mastering breast feeding together.  It was all beautiful.  And hard. 



Now it just seems surreal.  And, I sit here tonight thinking about the past year, and all it's brought. We aren't really a family that makes resolutions.  I mostly feel like they're probably just something else for me to feel guilty about, when I inevitably fail at them. 
But, this year, it feels a little magical getting to start a new year.  Like, somehow, things from the past really may have been swept away.  All is new.
Maybe I really can put some new habits into practice.  And throw some old ones out. 

Most of them will revolve around saying things like, 'letting your children watch two episodes of sesame street because you're really tired from being up in the night with tiny, does not make you a horrible parent. you're doing great, mama!!'
And, 'be more gentle with big.  She's just a kid.  She has been through a lot in her short seven years.'

I think I can totally do these.  Maybe my resolution is really just to be kinder.  To myself.  To others.  The first one will likely cause bleed over into the second.
My other resolution is to sleep through the night.  If someone could let tiny know about that one....


Happy New Year.  May the good things of the year outweigh the not so good ones.

Thursday, November 26, 2015

dishes.

i have always hated hand washing dishes.  the standing.  the grossness of all the food scraps in the water.  the oily feel of pots and pans.  hate. it.  so when we bought our first home a little over ten years ago, i laminated a small piece of paper, and put in my wallet.  it had the daily, weekly, and monthly cost of my favorite treat.  and how much i could save up towards a dishwasher if i didn't get it.  at Christmas, i asked for money to go towards a dishwasher.  and, i got one.  it was installed.  and for ten years, it has been being loaded and unloaded.  (it turns out, i don't like dishes in general.  not just the washing them by hand thing.)
tonight, i stood in the kitchen of our new house, and washed dishes.  we no longer have a dishwasher.  we don't even have room for one.  we downsized in square footage.  we have three bedrooms now, but only one bathroom.  but, most importantly, we live in a one story house.  for four years, i have been carrying little up and down our stairs for bed, and for nap.  it's tiring with a baby.  it's exhausting with a four year old, and if you've ever carried someone who has low muscle tone, it's a whole different level of physical than a typical child.
on top of all of that, shilo didn't have access to her bedroom.  if she wanted to play with toys that were in there, she couldn't.  yes, someday she'll walk.  someday, she'll safely navigate steps.  but, for now, a one story house meets our needs much better.
as i stood washing dishes though, i thought of how backwards it must look to others.  going smaller.  and how at some time in my life, an easier way to do dishes seemed like the best thing, ever.  but, life is so much different now.  and moving tiny out of our bedroom and into his own room is great.  and watching little crawl into her room and play, and come back out.  it's enough to make me all sorts of weepy.
and to top it all off, our beautiful new home is a bungalow.  the thing we have always wanted.  beautiful woodwork.  a fun archway between the living room and dining room.  hard wood floors.  a huge front porch that will one day house a porch swing. completely refinished, recently.  everything and more than we could've hoped for when we began searching.  plus, it's only three blocks from where we used to live. 

this past few weeks have been long.  we've had multiple trips to the children's hospital, an hour away.  one for a sedated MRI, one for a kidney ultrasound and urology appointment, and one for pulmonology. we got good news.  we got not so good news.  we scheduled surgery for asher in February.  we will be referred to orthopedics for asher's scoliosis.  it's congenital.  he has a hemi-vertebrae and some misformed ribs. we will be referred to a neuro-surgeon for his lipoma at the bottom of his spinal cord.  his hydronephrosis has resolved.  both girl's lungs are great. 
a dishwasher seems so insignificant at this point in my life. 
it feels cathartic to turn on music and plunge my hands into the warm water.  it is comforting to know that there was a way for me to fix the mess that lay on the kitchen counter.  that when i finished, things would feel new. better.  controlled.

since the newest diagnoses, i've thought back over my life as a mother.  where i started.  with schedules and parenting books, and doing everything just so.  and where i am now.  my attempts in the beginning to do everything 'right' were because i believed i could control things.  if i just did everything, just so, my kids would sleep well, and eat well, and obey.  they would be smart. and healthy.  so very healthy.
but, it turns out i'm raising tiny humans.  and it's messy, and dirty, and they have genetic disorders, and brain damage, and misformed backbones.  and, there are nights i lie awake, figuring out how to fix it all.  how to go back in time and be a better mother, a better advocate, and undo the things that are broken in them.  and as i lie there, i become completely swallowed by the grief of being unable to make things easier and better for my children.
and, so, the dishes become an easy way to fix things.  to make them right.  they were once dirty, they are now clean.  and i can do it again. and again.  it's healing. so i sing along with Lauren Daigle and remember that He can make dry bones into an army.  and He can walk with me through hard things, breathing in life, and singing truth over me, much louder than the lies the enemy likes to whisper.