Tuesday, April 30, 2013

infertile. life-giver.

'women hang their superhero capes on the hook of life-giver. sometimes it's hard not to feel broken.'  -fpfg

every now and then i'm in a crowd.  at a girls night.  stumble into a conversations.  and i sit quietly.  or i back out, trying to go unnoticed.  i don't want to hear about it.  i don't want to talk about it.  there's a word that goes with my body that i don't ever use.  other people may say it.  but i don't feel it.  and so i don't use it as my description.
infertile.
i have friends who say they are infertile.  the struggle (or struggled) with infertility.  i wrestled for a minute.  but i don't struggle with it.  i love the children we have been given. i am okay with the fact that all of my children will grow in the womb of another woman.  and so i don't use the word infertile to describe us.
but, God help me, when i hear those warrior stories of childbirth, it does something to my heart.  it whispers something in my ear.
'you are less than.  you can't bring forth life. you are broken.  you are not a complete woman.'
and i read this post a while back. it's the only post about infertility that has ever brought me to tears.  most of the time i relate to nothing.  numbers.  hormones.  shots.  i did none of that.  i have no desire to go through the pain of it. emotional. or physical.
but feeling like God had a different plan for my life.  absolutely.  i can relate to that to the very depth of my soul.  my heart rejoices in this.
as i sit silently in those conversations.  listening.  feeling awkward.  i realize i don't have a war story.  i didn't fight and use my body to bring my children into this world.  instead, i filled out paperwork.  and sat through interviews.  i had my house looked at to make certain it was an acceptable environment.  i made a profile in hopes that some woman who was pregnant might read it and find me worthy of parenting her child.

and i think back to sitting in mcdonald's with my big's tummy mommy.  laughing.  her amazed at my ability to put away a big mac.  me amazed, at her ability to selflessly ask me to be her 'baby mama.' i think of her smile.  her heart.  and her large round abdomen.  i remember the birth, the hospital stay, and the goodbye.  i definitely remember the goodbye.
i have the vivid picture of sitting in a mexican restaurant with little's tummy mommy.  her mom by her side.  how nervous she was.  how much she wanted us to understand why she was making this choice.  and how her eyes stayed wet with tears the whole time we were there.

so forgive me if i seem uninterested in your birth story.  don't be hurt by it.  i'm trying to live in a place where i remember what big and little's mommy's saw in me. these women saw something that so many others can't.  they don't see me as broken.  they don't see me as infertile.  they see me as a life-giver. to the children they gave life to.

the sign.

some of you may recall my brief story of the fight i had to partake in to get a sign put up to warn drivers that we have a child who is deaf.




this would be our sign.  and that would be our house in the background.  thank you very much, i will get the things i believer are important to keep my children safe.

Monday, April 29, 2013

our night.











abigail likes chocolate.  shilo hates sitting (although she can actually do it for longer and longer periods of time now).

Tuesday, April 23, 2013

heart.

 i changed her diaper, and blew raspberries on her belly, legs, neck, and cheek.  she giggled, and tried to play with my hair.  i stood up and just looked at her a minute.  remembering.  one year.  it's hard to believe.  the nine hours of sitting.  the nurse who came by every hour to update us.  the surgeon who did his best to warn us that he didn't think she would do well.
walking into the huge room we were given because the doctors all believed she would need to be on bypass still. she wasn't.  rejoicing when she began pacing on her own.  rejoicing when they closed her sternum the next day.  tears of joy when that damn tube finally came out of her throat.  seeing her whole round face for the first time in nine weeks.
it's hard to believe it has been a whole year.  it's hard to believe it has only been a year.  it feels like some sort of alternate universe we lived in.  one i have tried hard to forget.  but there's this scar.  i see it everyday.  the ugly and beautiful mingle together.  all i can find is thankfulness that my little is here.
yesterday, as a sat at the funeral sofi,  i was reminded of where we had been.  i remembered trying to prepare my heart to say goodbye.  i remembered middle of the night text to my husband, 'i don't think she's going to make it.  her sats are five, they are bagging her, and she isn't coming out of it.'  and i remembered the day that so many other parents of little's who need ohs fear.
but we weren't afraid. it was our only chance of ever having our little back.

happy heart day, sweet little.


Saturday, April 20, 2013

here.

i sat in the lobby of the children's hospital with shilo, and clumsily held her and pushed her feed at the same time.  it was cold and flu season, and we had just finished an outpatient appointment.  i did not want to sit in the crowded cafeteria surrounded by germs.  i didn't want to sit on the chairs where others had sat in the lobby.  so i found a little ledge, and sat and fed her.  i was pretty oblivious to others around me, mostly because so many people stare (even in a children's hospital) when you are feeding a kid with a g-tube.
out of nowhere a woman approached me.  she smiled and said she had been talking to her husband and noticed me from upstairs (they have a balcony type overlook).

'my daughter has the same thing.  they are going to put a g-tube in too.  that's why i noticed you.'

i talked to her for a little bit.  her daughter had just had her av canal repair, and was getting ready to get a pacemaker.  she would get a g-tube down the road as well.  or at least that was the plan.
there has been a lot between there and here.
here is ugly.
here is hard.
here is waking up to a facebook update that says, 'sofi esta con Jesus.'  and gasping.  and crying.  making a meal, and wishing i had the right words to make the pain less.
here is asking again, the same questions i have been asking for a year now.  about life.  about death. about children.  about healing.
here is knowing the truth, and saying the truth, even when i don't feel it.
here is holding on tight to the fact that, 'He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.'  revelation 21:4
here is longing for that day.  not for my own sake.  for the sake of a family who have lost part of their hearts. their little. their sofi.

Wednesday, April 17, 2013

s.l.o.w.


i am always unsure how to help people understand this concept.  i feel like when i respond, i come across as being annoyed.  that's not the case.  so i'm going to try to explain it here.

my little's progress in life is, and will continue to be, much slower than most chidlren's.  learning to eat will not happen in a couple of months.  she may swallow something at one meal, and not again for over a week.  we celebrate the progress, but also know that it doesn't mean that tubes coming out anytime soon.  i cannot count the number of times people ask me how long she will have the tube, when they will take it out, or who ask me every time they see me if she's eating yet.
there is no magic number for losing the tube.  as soon as she can sustain herself with oral feeds, we can lose it.  it's likely going to be a while.  we're working with her.  we're hopeful.  so when you watch this awesomely cute video of our little eating ice cream, it's not because she rocks at eating.  yet.  she didn't really swallow much of what we gave her.  it's just a fun video of her trying cold ice cream, and her reaction.
video

and when you see this next picture, of shilo rocking therapy, please don't assume that she's on the verge of crawling.  she can't sit up.  still. but she is gaining strength.  and we are super proud of how much she has accomplished in less than a year (since her hospital release).  we think she's an awesome rock star.  even if her progress is a little slower than most kiddos.  and she'll get there.  plus, she brilliant at being able to roll and get into things she's not supposed to.  don't let her lack of physical skills make you think she isn't just as disobedient and ornery as any other seventeen month old.  she's got that down.

supporting herself on her hands and knees (her therapist helped her get there).


don't worry.  i'm pretty sure the world will here our screams when she sits, crawls, walks, and eats.  we're loud cheerers at our house.

Monday, April 15, 2013

...something wrong with them.

i use this blog as a forum for lots of different things, because our lives are filled with many labels.  i know people don't always understand things outside of their own lives.  i am 300% certain i have said stupid and hurtful things to other people.  in general, when i'm met with comments that make my heart hurt a little, i do my best to educate, and then i make a joke about it on facebook later.  it's how i get through my day.  so today, i'm going to share, once again, about adoption.  i need people to understand these things.  my four year old understands what you're saying.  she's smart.  and, i'm starting to believe, that it was the grace of God, that allowed my little to be deaf.  because i don't ever want her to hear what people ask.

so let's start by reestablishing something.  first moms, birth moms, tummy mommy, whatever you would like to refer to the woman who carried a child, and then placed that child in someone else's arms, ARE. NOT. SELFISH.  stop judging them.  i don't care if they were addicted to crack.  they loved their child so much that they said, 'i cannot give this child what i want them to have.  i am going to find someone who can.'  i have met lots of birth mothers.  none of them have ever said, 'i don't want this kid.'  i've watched the tears.  i've heard the mixture of joy and sorrow that come with the choice they made.  it takes more love than i can hope or imagine to place a child for adoption.  educate yourself.  meet some birth moms.  read their stories.  stop. judging. them.
so here is where thing get hairy.  our family looks different than others.  people are curious.  i get it.  i know, that no matter what, we will get questions.  and like i said above, i can say the wrong thing sometimes.  there is a line though.  one that makes it really hard for me to be graceful.  one that makes my eyes well up, and my heart cry, 'dear God, please don't let abigail internalize that.'

'are both of those kids your?'
'yes.'
(referring to abigail) 'is she adopted?'
'she WAS adopted.  they both were'  (let me explain this answer.  first of all, for us, adoption was a one time thing.  it happened, and now it's over with.  second of all, i know that people assume shilo is biological because of skin color.  so i want to make certain not to single abigail out.)
(referring to shilo) 'oh.  did her mom give her up because she knew something was wrong with her?'

i get instantly pissed when i hear this.  i can eek by the fact that children aren't given up.  they are placed.  i'll pretend like i didn't even hear that.  but, did you really just ask me, in front of my children, if her mom got rid of her because she had something wrong with her?  really?  you just said that?  and what you don't know, is that my other daughter, standing there, also has a genetic disorder.  and she hears you.  and she gets it.  she's a very smart little girl.  i should not have to fix your ugly words for my children.
the questions vary, but they all are the same:  'i can't believe she gave her up.  kids like her are so sweet.'  'i would never give up a child just because they had something wrong with them.'  and then the flip of, 'did you know there was something wrong with her before you got her?'
my children weren't placed for adoption because of anything that had anything to do with them.  at all.  children are placed because their first families did not have the resources to parent them the way they wanted them to be parented.  money.  time.  health.  energy.  healthcare. the list goes on.  nothing on that list is because of the child.
could a parent say, 'i do not have the resources to take care of a child with special needs.'  absolutely.  that still does not translate to placing a child because she has 'something wrong with her.'
i'm all done being nice when someone asks this.  i am a fierce protector of my daughter's hearts.  i will not allow an adult, who has the sense to think before they talk, to say ugly things anymore.  i'm going to start calling people on it.  be ready.

nothing wrong with big.


definitely nothing wrong with these two sisters.


nothing wrong with  little.

Wednesday, April 10, 2013

we experienced a miracle.

a year ago right now, i lived in what felt like to me, some level of hell.  day in and day out was spent in the corner of a dark picu room.  i would hear, 'heart surgery' and then the next day all hopes of that happening would be shot because someone changed a medicine and shilo went down hill.  
i felt, deeply, that God had given us this little girl, and then quickly ran fleeing the opposite direction.  it felt like some sort of ugly and cruel trick.  why, why, why, would He call us to adopt a child, and then have us end up living like this.  there was no good explanation.  and so i sat.  and i became bitter.
when we got home, i would love to say it was better.  but i came home to a child who was constantly hooked to a feeding pump, an oxygen tube, and was on so much medicine we had to get up multiple times every night to give it to her.  she was also being weaned off of narcotics, and had days where she cried a high pitched horrid cry.  all day.  the little baby who had smiled for the first time just days before being hospitalized  just laid there.  she didn't smile.  she seemed completely uncaring that we were even there.
home was more work than ever before.  i was a hot mess.  i yelled at abigail a lot.  i felt more alone than i did in that hospital.  jason and i just made i through the days, and at the end of the night, we crashed so we could do it again the next day.
and the nights.  they were some new level of hell.  i didn't sleep well.  i would wake up confused, not knowing where i was, how old i was, and then it would all hit me, and i felt this ugly guilt from what had happened over the last months of our lives.  i felt like i had ruined us.  and satan was quick to confirm that thought.
slowly, slowly, slowly, things improved.  she came off of meds a little at a time.  she didn't need oxygen all the time.  she started smiling again.  she didn't have to be hooked to her feed pump so much.  we didn't have to get up at night time.  i yelled less.  i got more sleep.  life began to feel better.
i won't pretend that i now have happy thoughts and feelings about that time in our lives.  it was hard.  i hated it.  i still am working through moments of bitter, and confusion about why that needed to be.  but the last few months have shown me something i would have adamantly denied before hand.  we experienced a miracle.  the fact that shilo is here, with us now, smiling, loving, and full of life, is a miracle.
not so long ago i got a phone call from my mom.  my uncle had, had a heart attack.  he was in the hospital awaiting triple bypass surgery.  while his situation was certainly different than shilo's, i couldn't help but notice the similarities as the days went on.  he aspirated, ended up with an infection, was intubated, and passed away.  shilo had an infection, aspirated while being intubated, worsening the infection, went into heart failure, and she's here.
as i sat at his funeral, i felt, for the first time, like maybe, just maybe, God had heard my prayers all those days in the hospital.  He definately didn't give what i asked for at the time-a quick trip, back home, a baby who could still eat-but she's here.  and our lives would be less without her.
i recently met another mom of a child with Ds while at an outpatient appointment.  her daughter had an av canal-the heart surgery shilo had.  after surgery, she has had to be re-intubated multiple times.  they couldn't figure out what was going on.  finally.  finally, they found another hole in her heart, that needed patched.  she had that surgery monday, and thus far is doing okay.  she still has a road ahead of her.
shilo, when she went in for her av canal, had an extra asd that nobody knew about.  it hadn't been visible on her echos.  it hadn't even been noticed during her first heart surgery.  but the surgeon noticed it when fixing her av canal, and repaired it as well.  i didn't know, until recently, that sometimes, those extra holes aren't caught, even during surgery.  sometimes, kids continue to struggle, and nobody can figure out why.  sometimes, it's not caught in time.  and i'm blown away that my little, with her fixed heart, is currently playing with her sister in their room.
it may take me the rest of my life to get all the small bites of what God was doing during those long months in the hospital.  but, what i can clearly say now, one year later, is that we experienced a miracle.  for that, we are thankful.

Tuesday, April 9, 2013

i quit.

a long time ago...okay, it really wasn't that long, but it feels that way now.  anyway, before abigail was born, i read a lot of parenting books.  a lot.  they were great.  i got ideas on how to get my kid to sleep, how to discipline, how to..you already know.  the list goes on forever.
i thought reading all the books was a great idea.  take ideas from each one, figure out what i agreed with and didn't, and run with it.  turns out, the first time my daughter didn't do something by 'the book' i was following for this specific part of parenting, i was a hot mess.  i cried.  i knew that i had failed as a parent that day.  our lives were ruined.  she was six weeks old.  she had not been alive for two months yet.
i would love to say that was my wake up call.  but, it wasn't.  instead, i continued to devour books about parenting.  i've read more than i can even recount.  and with each new book and concept i became a little more stressed out.  all i have ever wanted, was to be a great parent to my girls.
kiddo two, i didn't even open the books that were given me on down syndrome.  even if i had wanted to attempt some sort of sleep training method, it wouldn't have mattered since she spent so much time on narcotics during the first year.
i quit reading parenting books.  well, that's not entirely true.  i have one i really like, and read, and re-read.  grace based parenting.  i love that book.  but the rest, no thanks. i'm not even intersted in the newest articles from psychologist really.
i have my thoughts and philosophies on parenting.  i know what has worked for our family to get the most sleep for everyone.  i know what we believe about discipline.  i know how we feel about television watching, eating and health, helping around the house, and on and on.  it's okay if you feel differently.  it's even okay with me if the psychologist have said something different than what we do.  they don't know my kids,nor do they ever offer to come help me out when they expel their newest thought and philosophies on parenting.
i was spending some time with friends the other day when a friend recommended a book she was reading about discipline.  it sounded interesting.  i had no desire to read it.  what we are doing works (most days).  our children seem to feel loved and secure.  i don't want to start over, or add to my long list of parenting guilt.
and somehow, i was able to walk away without even giving the book another thought.  i think knowledge is power.  i think our society has saturated us with parenting information, all of it research based, and all of it saying the opposite of each other.  some say co-sleep.  some say cry it out.  i say, figure out how everyone gets the most sleep, and do it.  some say no television ever.  some say after two.  i say, figure out what you need as a parent to be a great parent.  sometimes, that's putting the children in front of a television show, and taking a break.  it's okay.  some kids respond best to time-outs.  some respond best to a (well controlled, not angry) spanking.  some kids have a 'thing' that they would do anything to keep it from being taken away. figure out which one is your kid, and be consistent.
and most of all, give yourself grace.  it was a hard morning at our house.  i was exasperated at the event that took place, but i also was sort of proud of myself later, for how well i handled the situation.  and so i treated myself to five minutes of hiding alone in the kitchen eating some chocolate, and drinking tea.  i have no idea what a book would've told me to do in the situation.  instead, i did what worked best for our family at that moment.

Wednesday, April 3, 2013

easter.

i was pretty excited for sunday.  for the first time, in six months, we were going to church as a family.  jason goes every week, but the girls and i have been sitting it out because of my huge fear of germs due to the potential for a virus to make our little very sick.  again.
we had shilo's lunch blended and ready.  i had packed abigail's gluten and nut safe lunch the night before.  i had awesome dresses ready for the girls...shilo was going to get to wear the one that abigail wore for her first easter.  last year's easter was a little less than celebratory.  abigail looked cute in her dress, and shilo looked cute in her new hairbow and baby legs.  but, the whole breathing through a tube in her throat while in the picu, put a damper on the day.

easter 2012

you have likely figure out at this point, that things didn't go as we had hoped.  papa and abigail got to go to church.  mama and shilo got to go to the emergency room.  shilo woke up unable to hold her head up.  we were a little surprised since this is what she does when she has had a seizure at some point in the night that was fairly big.  she had been on her meds for a week and a half at this point.  so we continue with the morning, and figured she would nap it off like she has in the past.  she had small seizures all during breakfast. and then after breakfast, she would seize a few times, and then puke everywhere.  i called neuro who said to give her an extra dose of meds (since she had likely puked the first one up).  she promptly seized and puked that one too.  so we went to the hospital.  she's fine now.  she was fine that afternoon.
we did, however, manage, to get some pictures of the girls in their dresses before shilo puked on hers. they didn't turn out great.

i feel like this could land on awkward family photos.

but next year, we WILL be getting some great pictures.  we WILL all be smiling, and happy.  and we WILL all be well. little agrees.


i'm fine.  why were you so worried?