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. 

grace.

i go through these periods where i become sort of stuck on one idea or concept.  what does that really mean?  what does that look like when done right?  right now, it's the idea of what grace really is: especially in relation to who God is, and how He offers grace to all of us.
so i've been reading, and just reminding myself over and over all day, for me, for abigail, for jason, for the strangers who say things to me that make me want to lose my mind:  grace.  grace.
i don't believe that grace means that disobedience gets a free pass.  instead, i think that when my big gets in trouble, and has to sit out playing with friends, i can hold her and tell her i'm sad, too, that she doesn't get to play.
and grace doesn't mean that when i lose my temper with abigail i don't need to try to reconcile with her. i need to apologize.  and then i need to forgive myself and move on.  because dwelling on my mistakes is not grace.
in reading lots of verses on grace the one that stuck out to me is 'when sin increased, grace increased all the more' (Romans 5:20).  i've been thinking through this and what it means.  and i quickly looked around at the church body i belong to, and felt it.
i love my church. it is full of a very diverse group of people sunday morning.  black and white.  young and old.  recovering addicts, people with histories of felonies, middle class, upper class, and the not so middle or upper class.  but, the thing i love the most, is that every person there seems to outwardly live their own mess.  i'm not talking about walking around bragging about the things we do that we shouldn't.  i'm talking about people who know each others struggles.  people who are honest and say, 'i've started drinking again, and got pulled over for a dui.  i need some prayer.  some love.  some help.'
but, the biggest, and greatest thing about our church is that with every ounce of my being, i can feel the grace. i think the 'sin abounding' thing isn't meant to be taken as increasing your sin.  i think, as i look around, the places where grace abounds more, are those places that are full of real people. honest about sin.  spilling it out abundantly.
and when i am in a place where grace abounds, it is like a fog that rolls in and out, around and through, taking with it the sin part and leaving behind only the grace.  the sun shining down burning off the sin making grace glitter and illuminate on each person-like the dew that's left on the grass after a fog.
i just have to take my shoes off and walk around on it.  to feel it.  i have to bend down and look closely at the way the light reflects off of each drop.  and i have to try to take pictures of it, zoomed way in, as to show every detail.  to know, for myself, that the beauty i'm experiencing is real.  is there anything, so marvelous, so remarkable as grace.
as i've searched, and searched, i've read through story after story that tries hard to explain grace.  but, alas, they do it know justice.  because the moment i think i might know it, something bigger and more beautiful takes place.  and i have to continue to search, and pursue.  hoping my journey leaves those around me being touched by the overflow of grace i'm discovering.

for from His fullness we have all received, grace upon grace.   John 1:16

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.

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.

killing dreams.

most of us are familiar with the idea of the 'american dream.'  you know, the idea that we are all able to attain a life with prosperity, having nice things, raising awesome kids, and retiring to be able to take awesome trips, and spend time with grand kids.
our family bucked most of that idea a long time ago.  we don't want a big house, fancy cars, and lots of stuff.   we want time together, laughter, and willingly give up lots of things in order for me to stay home with our kiddos, like a second car, a cell phone, new gadgets, new clothes, and so on and so forth.  we're pretty content with it though.  i'll take playing candy land, teaching my children, and watching shilo sit alone for the first times over trendy jeans and a car payment any day.

before abigail came, when she was but the name that God gave to us, and a lingering desire, there was a theme for her life.  there was this one word that God gave us over and over to cling onto for her.  hope.  her middle name means hope in hebrew.  learning to hope when we waited on a baby, grew my faith.  learning to hope in the face of a diagnoses that leaves scary words rumbling through your head from day to day, has grown my faith.  watching strangers pour out their love, support, and financial support as we got ready to have a tumor removed from our daughter's leg, made us have hope, and it would be impossible to have anything less than faith as we watched 30,000 dollars pour in in less than a month.
since the birth of shilo though, i have had a harder time putting my finger on what exactly it is that i'm supposed to be learning.  there has, again, been hope and faith lessons.  but that never quite feels like the lesson at hand.  there have been a lot of lessons in learning to trust, even when things look different than i had thought or hoped.  but i still don't quite think that's where the lesson lies.  so i'm going to back up and be honest about some things.
first of all, i have sort of said this a few times on here, but i want to make this clear; when we chose to adopt a child with down syndrome, it looked much different in my head than what it does in reality.  a really cute kid with some cognitive and developmental delays was totally doable.  i had pictures of being able to tell people that lots of people with down syndrome grow up to become independent, some go to college, some get married, and some even own their own businesses.  sometimes i wonder if we knew then all that would come ahead if we would have made a different choice.  maybe.  i don't know really.  i can't imagine a different choice, because it would mean shilo wouldn't be here with us.  and i can't, knowing my daughter, say i wouldn't have wanted her.  because i want her.  and in reality, there are lots of parents, dealing with typical things who may not have had children, had they known what life was going to be like.  there is grace in the not knowing.
my struggle from the very beginning was in the fact that i didn't want to fall in love with her.  she had heart defects.  and ohs can have not great outcomes.  what if i fell in love and things went horrible.  but fall in love i did.  and about the time where i felt like things were going to be okay, they suddenly weren't.  and most of you already know the story.  hospital stay.  nearly died.  ohs.  home.  life changing.  and everyday since then has gotten a little better.  a lot easier.  and my love has grown exponentially for my little.  i think the being scared to fall in love thing is pretty common, judging by the song written by matt hammitt after he found out his son had a congenital heart defect.
we were in the hospital a year ago right now.  she lived.  she's here.  she great.  and she has way more going on than we ever would have guessed.  i don't love writing out all my children's labels in one place, but for the sake of this post, i will.  down syndrome, coarctation of the aorta (repaired), av canal (repaired), a second asd (repaired), cor triatriatum (repaired), pulmonary hypertension, hypothyroidism, congenital mixed hearing loss (deaf in the right ear, severely hard of hearing in left), epilepsy, significant developmental delays, and a g-tube due to dysphagia.
now, i still think my daughter is very intelligent.  just this morning she signed a two word sentence for the first time ever.  'kiss baby.'  that's pretty amazing at sixteen months, espeically when you spent quite a few months in the hospital.  none the less, at some point the pride i had that my child could grow up and do all of the things i wrote above smacked me in the face.  what if she is also severely cognitively delayed?  what if she can't ever live independently?  what if she lives with us the rest of our lives?
and this, this, is where my lesson became obvious.  because as i wrestled through these questions, i learned something.  thirteen years ago i gave my life to Christ.  i said i wanted Him in control.  and i do.  and most of the time that doesn't bother me, or scare me, or any of that.  but i didn't realize until our little came along that i still held on to the idea that our children would grow up, move out, and we would get to have all sorts of fun in retirement. 
so at thirty, i've been working through the idea that it's possible, that i may be parenting the rest of my life.  it isn't just shilo.  our big could have any number of things come up and take away some of her ability to function.  when we adopt again, we could end up with a child who has more needs than the two we already have.  we may be in this thing for a lifetime.  and suddenly, i was reminded that my life is not my own.
i believe that God called us to adopt.  i believe He chose the two girls we have in our home, to be our daughters.  i have found peace and comfort in the idea that my life is not mine to plan.  i do not need to look forward to retirement and all the great stuff that will come.  i need to look at today, and all the great stuff that is.  the future will be what it will be.  and no amount of trying to think it out, plan it out, and perfect it, will cause it to actually be, perfect.
so i accept where we are.  because i'm more than willing to kill any dreams i have left in order to be who God has called me to be; a mama to two amazing beings.  the american dream is a deception, a lie, and a thief of today's joy.

i choose, instead, to live the dream that God has for me.

choosing to remember.

a year ago, i was awake.  all night.  holding and swaying, singing and praying.  exhausted and frightened i held a little.  all night. last night i turned on the same playlist that i listened to then.  beautiful peaceful music played.  holding and swaying.  singing and praying.  exhausted and thankful i held a little.  she molded into the crook of my elbow because that's where she belongs.  her little eyes fluttered.  her body relaxed, her breathing became rhythmic.  

a year ago today, multiple doctors and nurses rushed in a hospital room.  they resuscitated a tiny little girl, breathing for her with an ambu, and pumping her chest with their hands to keep her heart going, and blood flowing through her little body.  they put a tube down her throat to breathe for her.  and it stayed there for a long time.  her mama sat and tried to think of words to tell a three year old about her sister dying.  there were tears.  there were doctors who seemed so heartless.  there was the constant rushing in of nurses and respiratory therapist to use the ambu again.  there was non-stop beeping.  there were lines and cords, plugs and wires.
and somewhere, although it didn't feel like it at the time, there was some small whisper of hope.  of future, life, and laughter.  of smiles some day, and milestones to meet.  of a sister who loves fiercely, a papa who swoons, and a mama who can't get enough.

the ambu was always close by, and got used quite often.

it is amazing the difference a year can make in the life of a little.  we are thankful beyond words that we have a sweet little who is still here with us.  smiling.  loving her sister.  and smitten with her mama and papa.

more sitting practice.

wearing the pirate hat her sister made her (i have no idea why it's a pirate hat).

playing with her sister.

'every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.'  james 1:17

shilo.  gift from God. one year later.

february.

i stand in the kitchen watching the large snowflakes fall from the sky, and i think of the line from a nichole nordeman song, 'wrapped in blankets white, all creation, shivers underneath.'  i can hear my big giggling in the other room, and my little loudly proclaiming, 'dadadadada!'   and, even those happy noises make me feel guilty.  i don't even try to stop the tears.  they are around for a little while.

when i woke up i could feel the lies creeping in immediately.  the grew bigger and bigger, threatening to swallow me.  and i know over the next couple of weeks that i'm going to be fighting hard with myself to let go of all that i want to hold onto tightly, believing that if i just hold on tight enough, it really will change the past.  i can somehow go back and undo that one decision that left us living separately for months, and nearly took my little's life.
i text jason and ask him to pray for me.  and, as always he reminds me of all that is good about me.  but, the good doesn't erase that one moment in time.

and i know as that 'one year ago today' draws closer that the memories will keep flooding me.  and they will do their best to remind me of where i have failed as a parent.  i'm not sure how to undo those thoughts, and i most certainly can't undo the past.  i will, however, remind those thoughts that they are not welcome to take away my here and now because that's all i am able to do, is the here and now. and so we live.  we love.  and, we take lots of pictures, just in case our here and now ever becomes an ugly hospital room again. or something worse.

the emotions of the last few days.

Shilo is currently sleeping, Jason is back home to get some work done and hang out with our daughter, and I am choosing not to hold sweet one right now because she tends to desat when she gets upset...so I'll wait until they do vitals again and then comfort her instead of being the one who causes it.
Anyway, I thought I would share a little more of the personal and emotions side of things here.
First of all, I wasn't sure what to expect when we got here.  There are so many stigmas that go with children with Down syndrome that I was ready to defend our choice to knowingly adopt Shilo.  But that hasn't been the case at all.  While I have had lots of saintly comments, 'wow two children with special needs, y'all are just amazing' I think it's good to clear up right away that we aren't amazing or saintly.  We wanted to be parents.  And without Abigail and Shilo we wouldn't be.  As far as special needs go: raise your hand if you have a biological child with special needs.  Now raise your hand if you got some sort of choice about it during pregnancy.  Right.  Nobody else gets to choose.  So why should I be able to say, 'yes, I'll take a Caucasian baby, brown hair, green eyes, and perfectly healthy please?' 
I also believe that If I'm going to be willing to step up with my beliefs about being pro-life then I should also step up to the plate of helping those Mama's who choose life.  For some that might mean coming alongside single parents.  For some it might mean stepping up and taking in those kiddos who's parents loved them enough to choose life and make certain that they had a great one by placing them for adoption.  I can't write passionate post about not aborting children with Down syndrome and then hope everything just works out in the end for whomever ends up in that situation. 
'If one of you says to him, "Go, I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?'  These verses are from James 2:16.  We are called to have the works that back up our faith.  If I say, go have your baby with Down syndrome, and enjoy your life, but am not there to help out in some way I am a liar.  Well wishes do nothing to help in the midst of the situation.

All that was to bring us to the first doctor conversation I had in the NICU at University of Kentucky hospital.  It will forever be etched in my heart as a moment that God ordained with great joy.
Jason and I arrived here on Tuesday at around 1 in the afternoon.  We sat next to Shilo (who still didn't have a name at that point) and stared and rubbed and kissed and sang.  After about an hour a doctor pulled us aside so he could give us all of the going-ons with our little girl.  He went through what all she had going on medically and then with the biggest smile said, ' She has Down syndrome. We know that. But she will be great. She is great. Where I am from [India] we don't have this sort of care for these children. She will do just fine.'  It went on, but the conversation about her actual diagnoses was all positives of why her life will be great and how many opportunities she will still have in life if we don't limit her.  I still tear up thinking about it.

Every interaction we have had with nurses here has included a story about a friend, a niece, a cousin, somebody they know that has Down syndrome who is just this awesome joyful person whom they have strong affectionate feeling towards.  Not one person has questioned the logic of what we are doing.  Not one person has mentioned that she should have been disposed of while in the womb. 

We are so grateful for our Shilo and the joy she will bring to our family.  We believe ALL children are a blessing from the Lord.

Enjoying our children with different chromosomes than most,

P.S.  While I'm not going to make any sort of public push for assistance, we have had lots of people wanting to know how they could help.  So I added our paypal info at the side as well as the charity that we would love for people to donate to. :)

Heartsick.

Before you read any further in this post please go read this blog entry.  It's beautiful isn't it.  I read it tonight, and it seemed like a good jumping point for some thoughts I wanted to share.

What seems like forever ago, we were waiting on a baby.  God had told us that He was bringing us a little girl and her name should be Abigail.  During that time period, I watched a neighbor girl have her fourth, fifth, and sixth kid (she has eight now).  I also watched her not doing much parenting, and leaving it all to her oldest, who was around nine at the time her sixth was born.  I became slightly indignant and made certain to let God know how unfair it was that someone who didn't want kids kept having them, and someone who did couldn't.
On a warm day my husband, our dog Maggie, and I were our for a walk.  Some friends were outside.  They told us that they were pregnant, with their second.  During this time in my life the announcement of someone being pregnant always left a little sting.  However, this particular pregnancy was unexpected, and they seemed a little more exasperated than excited (they did eventually become excited, and they definitely love this child).  I was both heartbroken, and pissed.
I came home that day and went to my bedroom.  I sobbed as I told God just how unfair He was being.  I let Him know just exactly how I felt about people who didn't want to be pregnant having multiple children and on and on.  I carried on with my little fit for a while before I just layed there and cried.  God allowed me to cry and whine for a while (much longer than I allow it from my daughter).
And then,tenderly and firmly, God let me know a couple of things.  He first let me know that He could make it so that I could get pregnant.  That wasn't too hard for Him, and was something He would be more than willing to do.  He also clearly let me know that IF I got pregnant, it would not be the child He had promised us, and it wouldn't hold the same promises as our Abigail.
I won't say that the wait wasn't painful from there.  This was revealed to me at the very beginning of our process so we still waited over two years from that point before we heard about Abigail.  However, there was something about knowing that God really did have a plan that instantly took the bitterness away.

Like the blog I posted above talks about, it's really easy for me to look in the rear-view mirror and see how smooth that all was.  A long wait ended in a beautiful relationship with Abigail's tummy mommy, and one truly amazing little girl.  Our lives have been so full and rich, not only just being parents, but learning so much from God, as the result of getting to be Abigail's parents.  The trip felt scary, and I white knuckled it for sure, but here we are.
And like any crazy person along for this ride, we have decided to travel that same scary road again.  Most people would think that the second time around wouldn't seem quite so bad.  You know where most of the bumps are, and you know what the end result is.  I, at least, have been trying to tell myself that.
In reality though, I am just trying to keep from feeling the pain again.  Silly, I know.  So last night as we watched a show together, and a couple finds out they are chosen to adopt a baby, I felt it.  That ache that sat in my chest while we waited for Abigail.  That feeling of longing for my child, and knowing that all I can do is buckle up, and hold on.  I have been fighting it for a while, but couldn't control it any longer last night.
The truth is, despite that I have been on a very similar road, and despite that I can scoop up the most beautiful results in my arms, and kiss her repeatedly until she says, 'no sank you mama,' I am scared.  I spent three years walking around with that pain.  It just sat there, day in and day out.  Sometimes it got worse, but it never went away.  And honestly, I don't want to feel it again.  I especially don't want to feel it again for three years. 
It's that feeling of being heartsick, the feeling of hope being deferred; the reason that Abigail's middle name is Tohelet.  'Hope (Tohelet) deferred makes the heartsick, but a longing fulfilled is a tree of life.'  Proverbs 13:12
I don't want to live heartsick.  Yes, it's different this time, because I already have my first Tohelet upstairs sleeping right now.  That doesn't make it easier.  So we have buckled ourselves in, my knuckles are white, and I have tears streaming down my face.  But somewhere in me, just like before, I know that one day, I will get to look back, and realize that this road wasn't so scary.  And the company, the smiles, and the conversations I will get to have with the driver, will make the memory of this road even sweeter.  There will be much laughter and celebration when we arrive at our next destination as well.

Longing for our next child,

the end....

See this little girl playing the violin?

Or making the basket like she learned in ballet?

Do you notice her climbing that ladder all by herself?

And celebrating her third birthday with some friends?

Do you see her beautiful smile?

Yeah, this beautiful little girl right here.  She is no longer eligible for special needs services.  You can reread that if you want.  She officially aged out of early intervention today (the day before her third birthday).  Today was her last therapy session.  She was assessed by the school system and found to be on target for where she needs to be at her age!  Sounds to me like we will just continue to play instruments, make baskets and do ballet, climb at the park, and play in the bubbles.  Because we don't have to do anything else we need to be doing!!

Celebrating the end, 

That moment.

I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.

Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'

But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.

In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.

So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.

Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.

I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.

I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.

In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!

Enjoying seeing things from a different view,

"Tis the season.

As I was sitting at church on Sunday my mind drifted to Abigail, and where we are right now in life with her. It seems overwhelming at times, but I couldn't feel anything but hopeful. It's a season wrought with hope. And quickly I was reminded of where I was three years ago.
It was the worst Christmas I can remember. I was extremely depressed, and was begging God for a baby. I specifically asked God to bring me a Christmas miracle. When January rolled around and we hadn't gotten that phone call yet I sunk even lower. I was at the point where I was trying hard to let the desire to be a mama just die. But March came, and with the melting of the snow my heart seemed to soften a little too. And in April I sat praying one afternoon and heard God tell me to pray that our Abigail would come now. So I prayed, and called and asked others to do the same. The rest of the story is that in May we were chosen by Abigail's birth mom, and in September she was born.
However it wasn't lost on me that in December, when I was praying for my Christmas miracle, Abigail was being conceived. What I thought would be a miracle, and what it actually ended up being, were different, but beautiful none the less.
And so as I sit here during this season of advent, "expectation" I find myself unable to do anything but hope. I feel the hope that was born over 2000 years ago. I hope for the return of my Savior. And I hope for another miracle for my little girl.
The official update is that we went to the neurologist this morning and all signs point to a plexiform neurofibroma (although the doctor couldn't technically diagnose it because the MRI didn't make it clear). These specific type of tumors are much harder to deal with than regular neurofibromas. So for this reason we will be consulting with a surgeon to see if we can have it removed early. We also will have the added weight of having to cover whatever cost of this procedure and appointments ourselves. Our insurance will not pay for it because it is out of state and considered elective. However the doctor we are seeing is the best of the best and world renown for removing plexis. So we will figure out the finances for it.

Leaving you with the theme of the last six years of our lives, hope,

Praying for monkey.

The other day I heard Abigail coming down the steps. The next thing I knew it was quiet. I peaked around the corner and she was sitting on the step rocking her baby and patting her back.

I have an incredibly compassionate daughter. I am often blown away at how sweet she is with her baby dolls and stuffed animals. She sometimes even hugs and kisses inanimate objects (like our blue car). She is a little girl with a very big heart.
She also has begun to pretend all the time. She cooks when we cook. She likes to dress up, wear a purse, go shopping, drive her car, and about a million other things. It's fun to get to see your kids act things out. It gives you a small glimpse of how they view life. Sometimes I see things that make me realize I might be doing okay as a mama. Sometimes I get a reality check and realize I have some things I need to do differently.
In general Abigail is just becoming more aware of things. She is interacting more, and remembering (and retelling) more. This past week she was sitting on the potty and looked down and saw a few of her cafe au lait spots. She asked, "that?" I told her it was called a cafe au lait spot, but we just call them her chocolate chips and pretended to eat one. She later showed her papa and told him it was her "chochit chip." There is both joy and sorrow in having her realize she has spots on her. She is not self-conscious yet, so it's nice to tell her about the spots before she is old enough to experience the teasing from them. It's sad to know it is something that she may not always be comfortable with. I hope and pray that we tell her how beautiful she is enough that these spots won't matter some day.
A few weeks ago we got a hand me down cozy coupe car from her cousins. She LOVES it. However when she got in it the first time and told me she was going to the doctor I felt a small sting of pain. She is really good at pretending with her doctor kit. She knows what everything in it is for. It's pretty cute most of the time (although if you are her patient it's a bit more like getting beat up). I just can't help but think at the same time that if it wasn't for the combination of asthma, NF, and the incredible amount of time she spent with "common illnesses" the first two years (it seems to have slowed down) she would not be as great at it. I mean really, what two year old knows what a blood pressure cuff is, and that it squeezes your arm. But she is pretending what she knows. Driving to the doctor, and getting checked out.
But probably the biggest blow has come this past week. As we continue to wait (impatiently) to find out more from the doctor about the tumor in her leg, she continues to have a little bit of pain and an inordinate amount of itching (very common with NF, and NF tumors). She has started telling me that her stuffed animals and baby dolls have boo-boos on their leg or that they itch. It is such a "normal" part of her life that it is acted out in her pretend play. There is nothing that tugs at a parents heart like seeing their child act out their medical issues.
Like I mentioned above though, there are moments in her pretending that I think we might be doing okay as parents. And even though their is sorrow in watching her pretend her monkey has a boo-boo on his leg, I can't help but overflow when I watch the scene unfold:
Abigail, "Muhnee boo-boo, leg. Swatch."
Mama, "Monkey has a boo-boo on his leg and it itches."
A, "Uh-huh. (Hugs monkey to her) Sowwee muhnee boo-boo. (Kisses him) Pway. Jeyuh, boo-boo, swatch, amen."
Sometimes she asks me to pray for her animal, but most of the time she does. And whenever she is in pain or extremely itchy she asks Jason or I to pray.
So even if I mess up lots as a parent (and I do), I am so glad that the thing she has picked up on is that we can always go to Jesus. He is the author and perfecter of my faith, and He is using a sweet two year old to grow it in ways I never would have imagined.

Thankful for the trials of life that draw me closer to Him,

Why we pray.

At nine months old Abigail couldn't/wouldn't put weight on her legs. If you held her up to a standing type position she would stick her feet straight out. If you put her in the exersaucer they sort of just dangled. We had just found out that she had NF1. I had known for a while she wasn't putting her legs down like most babies did, but kept it stored away for "just in case." So I mentioned it at her nine month check up. The doctor thought it constituted further investigation, and ordered an MRI. Insurance denied it.

So at this point we were stuck trying to figure out what to do. Our pcp could appeal to our insurance company. We didn't have an appointment with the NF clinic until October (this was July). Or we could apply for a state insurance specifically for children with special needs that MIGHT cover it. I felt so helpless to figure out what was going on with our baby.

I was reading in James one night and had to stop at this part:

"Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." -James 5:13-14

I immediately felt like God was asking me to be obedient to His word. I didn't feel like He would or wouldn't heal her. Just that His word said to have the elders pray. So we did. And a few night later our pastor and his wife and children, as well as two of the elders and their families came and layed hands on Abigail, anointed her with oil and prayed. I could feel God moving. I didn't know what He was doing, but knew that He wanted to show Himself.

Before they all left our pastor's wife held Abigail up and she put weight on her legs. I was astonished, and wasn't certain if I believed it. I couldn't get her to do it again and thought it was probably just a fluke.

The next day we were playing at a friends house whom I had told all of the previous too. I was showing her how Abigail couldn't put weight on her legs, but instead all she kept doing was standing on her legs. I was nearly in tears as I watched it happen.

Over the next few months Abigail began to crawl finally, pull herself up, and eventually walk. With each new milestone I never forgot that God healed her. We didn't know if there was a tumor somewhere He had healed, if the leg issues were from her low muscle tone, or if we would ever know what He had healed. We simply rejoiced at our God's ability to perform miracles. And I still look at her sometimes, standing, dancing, jumping, and (making an attempt at) running and know that God did something, and has something awesome planned for her life.

There is more to this story....so you will have to stay tuned.

What do you ask for?

As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."

What do you pray for you children?

The valley of the shadow...

I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.

"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23


Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.

Enjoying the green pastures and quiet waters,

About that word hope again.

It was almost a year ago that we sat in a neurologist office with Abigail for the first time to find out she unofficially met the diagnostic criteria for NF. It was also a year ago she was diagnosed with asthma. I had recently started to feel like I was closer to the side of sanity again. I had stopped fearing every new doctor's appointment as the next horrible thing that would happen. I wasn't freaking out about every new bump or spot on Abigail, certain it was her first tumor. I was starting to feel almost like the NF was just a part of our lives.
And just like the first time we heard about NF, I took Abigail to the doctor for something completely unrelated, and got sucker punched with something new. So now I am in the waiting mode to see if she has mastocytosis. At this point if she has it I am certain it is mild. The thing is though, it's definition is like that of NF...most cases are mild, some are not. We don't have any way of predicting what will happen.
I feel like I'm caught in some sort of weird parent nightmare. Because it seems unlikely to have a child with a disorder (NF is not technically rare) that nobody has heard of, and then to also most likely have a second rare disorder. I mean does that really happen? And if it does it doesn't happen to us...right?
I am overwhelmed with it all right now. I want to know something now (our appointment for the masto is at the end of November). I want to find someone to blame. I want to fix this all. It feels so surreal to be in the same spot emotionally a year later with something different.
As I write about all of this I also feel torn. I feel SO fortunate with Abigail because of things we have already bypassed with the NF. I feel fortunate that although both of these disorders leave her at higher risk for being on the autism spectrum, we see no signs of that. I feel fortunate that I watch Abigail learn new things, say new words, walk, talk, laugh, eat, play, and everything else a typical two year old does. I am very aware of how easy we have it, even with all of the medical stuff.
But honestly, the craziest part of all of this to me is the word that God has whispered since before Abigail came....hope...I need to learn to hope. And not just hope that everything turns out okay, or that she outgrows the masto and never has the bad stuff from NF, but hoping in the one who can save her; the one who knows the cure to all things.
While we waited on a baby God told us to hope in Him and what He could do. And the story he spun into motion with our little girl could not be more beautiful. The things He is still writing and doing, have spurred me on to hoping for more than just a little girl for us, but hoping for the lives of her birth family to be changed by her presence in the world. And then learning about the NF all we could do was hope in Him. There isn't a doctor out there with the answers for this disorder. Nobody can tell you what the future holds. So I slowly remembered what it was like to live in hope; how it feels to be held up by the one who hung the stars and moon. And for whatever reason God gently nudged me over the summer to hang the word hope over all of the windows in our house. To remember to look at the world outside with hope in my eyes; because I know the one who can do all things.
And here I am again, losing hope. Feeling like I'm unable to swallow this, and trying hard to read what I can, talk to people, do whatever is in my power to figure out what the future holds. I don't believe that God has caused any of this suffering. I do believe that He refuses to waste it. And so with each new thing that comes into our lives it seems to all point back to that one word. The one thing that can lift me up and keep me moving forward when all I really feel like doing is laying down and waiving my white flag. But I can't give up. I can't back down after getting a taste of the things God does when we put our hope in Him.

"And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ will himself restore, confirm, strengthen, and establish you." 1Peter 5:10

Ready to be restored, confirmed, strengthened, and established by Christ,