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Tuesday, May 05, 2015

How You Can Be Awesome Today...

We've been making lists of what we need to do the second we get "the call."  And I finally read the "Liver Transplantation" guide given to us at the hospital--a medium-sized booklet full of info of the before's and after's of this new normal we're living in.  Oh man, do we have a lot of plates spinning right now, and while I'm eager for Brooklyn's health to be fully restored, I'm also able to be thankful on the days we don't get that call, because there's lots of TCB (taking care of business) to be done.

One of those pieces of business to be TC-ed is rallying our prayer warriors and sucker-punching the Enemy's attack.  Here's where you come in...

Would you commit to praying a verse of Scripture over us every day for 30 days starting with the day we receive "the call?"

1. Use an index cards or cut a regular sheet of paper in half (nothing larger please).
2. Write/type/paint/doodle/chicken scratch your committed verse onto both pieces of paper/cardstock.
3. Mail it to us in Chicago:
Brooklyn Faris
c/o April Clark
3539 W. Carroll Ave #2
Chicago, IL 60624

The verse can be primarily for/about Brooklyn (her health, her surgery, her life) or primarily for/about Nick & me (our family, fear & courage, strength, faith).  Whatever it is, when we say "Go!" you pray that verse over us every day for 30 days.  Write it on your calendar or set an alert in your phone.  And we will post your verse in Brooklyn's hospital room as a banner of prayer and protection and encouragement over our family.

We need this, friends.  God's hand through your prayers and encouragement have carried us through.  We know we can choose faith and courage over despair when you're standing with us.

Go ahead and send your verse NOW, because we have no idea when that call will come (it could be...now!  Or...now!  Well, I guess not, but it could also be...now!)  ;)  and we want your Scripture prayers to have gone before us, ready and waiting.

Feel free to send this to anyone and everyone--strangers-turned-new-friends are our favorite kinds of friends!  And thank you in advance.  You guys are clutch.  

Sunday, April 12, 2015

Telling the Story to Ourselves

I feel sad and overwhelmed today as the sunshine streams through my window on this pretty spring day.  And that's the way it is sometimes.

We'd like to think change is just good and not accompanied with stress and exhaustion and regression.  That healing is only triumph and will erase all trauma.  That progress means that you'll never get stuck again.  That you won't feel gloomy anymore once the sun is shining again.  

Last spring, we went through an intensive training program in order to become certified to teach a set of parenting strategies that we feel passionate about to others.  The program is called "Empowered to Connect," (ETC) and it was developed to support parents & caregivers of children "from hard places."  That phrase "from hard places," gets thrown around a lot as a popular phrase in adoption circles now, but in essence, it refers to a child who has experienced trauma of any form.  (That can include children who were involved in high risk/high stress pregnancies/births, spent time in the NICU/hospital, experienced childhood illnesses, or experienced any kind of traumatic event in their life.  That includes many more children than those who came to their families through adoption!)

We have loved and used this material since it was first presented to us when we were preparing to become adoptive parents.  We've read Dr. Karyn Purvis's book, "The Connected Child," multiple times, attended the Empowered to Connect Conference, participated in both the pre-adoptive ETC course as well as the post-adoptive parent Connect course, and then we were trained to be trainers.  We have had lots and lots and lots of practice with this material over the last six years.

And yet, I felt a heaviness yesterday as I attended a simulcast here in Memphis of the annual ETC conference.  No matter how much training I've received, how many books I've read, how many seminars I use to remind myself of the principals that promote connection and healing with my children...it's still really hard.  It's HARD.  Because trauma and pain and feelings and growing and BEING A PERSON is hard.  For everyone.

We've had a big year.  We're having a big year.  I joked the other day (in the context of forgetting to take a family picture on Easter) that "I don't do 2015."  So many plates are spinning and they're overwhelming and complex, and everything else has been pared down to the bare bones.  I didn't do my "12 Days of Christmas" this year or put ornaments on the tree or travel for New Year's or make Nick's chocolate peanut butter layer cake or compile Rhet's annual birthday video or do anything out of the ordinary for our 9th anniversary or hide eggs to hunt in the back yard.  We are keeping it so so SO simple.

And we're all feeling it, those big changes.  I've been honest with friends about how we're dealing with transition and regression with our kiddos.  But it struck me yesterday as I tried to hold the guilt and shame at bay while listening to experts talk about these parenting principles and values that I feel so passionate about...WE'VE regressed too.  Stress just does that.  It knocks you off your feet...pushes you back a couple steps.  I'm not peeing in my pants, but I might as well be...because I sure am regressing back to that yelling voice and angry eyes and lecture, lecture, lecturing...and so much despair that what I'm doing doesn't matter, that it's not making a difference, that I'm just spinning my wheels...

This is why the story matters.  This is why His Story matters.  We struggle to connect and and we repair our mistakes and we do our best, and then we do it all again the next day.  And through that mess, He is healing, restoring, redeeming.  WE are the WEAK ONES.  He is the strength.  We lose sight of the progress, and we feel like everything is sliding backwards, but He is writing the story.  And when we tell it, we see where we've come from and how we got here.

This whole time I've been thinking, "I need to tell them Brooklyn's story.  I need to tell them how God is at work in the world and in her life.  I need to tell them for His glory.  I need to tell them to strengthen their hearts and faith."  But this whole time...I've needed it.  I've been telling the story to myself.

He is not finished.  There is more to come.  And some of it will be so freaking hard.  And some if will be blindingly glorious.  But I'm going to keep telling this story...her story...His Story...to myself.  Because it's just what I need to keep doing this today. 

Thursday, April 09, 2015

Those Sweet Cheeks

I'm interrupting the crazy stories of how God worked to write a little "everyday" post of what life is like on a daily basis with sweet B.  Hoping I can satisfy some curiosity as well as educate a little on how best to pray for us and treat Brooklyn when you see us out and about.

First, I can't remember if I ever told you what "biliary atresia" is!  So for those of you who haven't asked Google yet, my most simple explanation is this: Everyone has ducts that lead from the liver to the small intestine.  The liver produces bile, and the ducts remove it from the liver and dump it into the small intestine.  This is what makes your poop brown.  (Gross, I know, but now you have your fun poop fact for the day!  I know you needed one of those, right?)  A person with biliary atresia (BILL-ee-airy uh-TREE-shuh) was born with ducts that are blocked, so the bile can't make it out of the liver.  Bile is toxic and causes liver damage and ultimately liver failure.  Sometimes a surgery called the "Kasai procedure" can be done, which reroutes the flow of bile and extends the life of the liver, but it needs to be done early enough in life (by 3 months old) to keep the liver from sustaining significant damage.  Without a successful Kasai procedure, a child cannot typically live past the age of 2 years old with biliary atresia.

So, there's my non-medical and probably not 100% accurate explanation.  But now you know.  {Cue shooting star with rainbow.}  In terms of Brooklyn's little body, she was given the Kasai procedure at around 4 months old, which is too late.  Her liver was already damaged and thus the older she got, the more that liver started shutting down.  We found out about her when she was 9 months old.  She weighed 10 lbs.  (The liver processes certain fat-soluble vitamins like A, D, E, & K, and they're needed for proper nutrition.  Since children with liver damage/failure cannot process those vitamins, they often have trouble putting on weight and getting the proper nutrition to help their little bodies grow.)  She had a big "buddha belly," caused by acites (ah-SITE-ees, which means there is fluid in her belly as a complication of liver failure), but her chest, arms/hands, legs/feet, and little booty were so, so tiny.  The doctors in China gave her a 50% chance of living 4-6 months.

PS: We are now at 6 months from that original prognosis!  {High five!}

Since October, Brooklyn has made it up to 15 lbs and grown 1 inch taller!  Yeah, girl!  And her development in all areas is just flourishing.  We're so proud of our Little Biscuit!  Lots of people (including us) are so surprised when they first meet Brooklyn, because she is tinier in person than she appears in pictures.  She has these sweet chubby cheeks and that big buddha belly, and they don't realize that her feet don't even fit in 3-6 month-size shoes!

(Her latest trick: saying "cheeeeeese!")
So, a day in the life with Brooklyn looks like this:

7-8a - She wakes up and we give her 3 vitamin supplements: a water-soluble combination of vitamins A, D, E, & K, a water-soluble version of vitamin D, and a water-soluble version of vitamin E.

When she first came home, she was gagging on pureed foods, but now she can feed herself finger foods and loves being fed with a fork or spoon.

More poop talk: B's poop is grey/white because it doesn't have bile in it.  Don't worry, it still stinks to high heaven.  ;)

9:30a - Brooklyn drinks a bottle of formula and usually takes a morning nap.
Normally, a 15-month old wouldn't still be drinking formula, but B drinks Pregestimil, which is specially formulated to be easier to digest for babies with fat-soluble digestion issues.  It's also $40/can at retail cost.  {Cha-ching!}  Totally worth it for the weight she's able to continue putting on!

11a - B wakes up, and we eat lunch and play.  She loves pulling up and cruising, she'll obsess over anything paper or plastic (or iPhone--ha), and she adores music.  (If she meets you, she will ask via hand motions if you know "The Itsy Bitsy Spider.")

1-2p - Time for another bottle and another nap!  I call the two-nap phase "nap jail" because you can only really get out of the house between those two naps.  But look at all the napping, uh I mean blogging, oops I mean housework I can get done!

2:30-4p -B wakes up and it's time for more playing!  We usually go pick up Rhet from school around this time.

5p - Dinner time for everyone--Brooklyn eats little bites of what everyone else is having.  Plus Annie's Cheddar Bunnies: her one true love.  ;)

6p- Brooklyn loves splashing in the water at bathtime.  She drinks one more bottle before going to bed around 7p.  I usually give her Benadryl, because hightened amounts of bilirubin (a result of bile) in the blood make your skin jaundiced (as you can see) and itchy.  (B's bili level is up to 23.  A normal level is 0.)  Especially when she's tired, Brooklyn scratches and scratches, and she will often scratch herself so much that she starts bleeding somewhere.  The Benadryl often helps alleviate some of the itchiness.  And thank you Old Navy, for making the only pj's B wears these days because the sleeves fold over and cover her hands in her little 6-9 month jammies!

10:30p - We wake B up to drink a bottle right before we go to bed.

2-4p - On a "good" night, B usually only wakes us up once to drink a bottle in the middle of the night.  (When we first came home, we were on "ever hour/every 2 hours" duty.  {Zzzzzzz})

Also, every minute of every day, have our phone turned on and nearby, because once we get "the call," we'll drop everything and follow our "Liver Call List."  We have an hour to return the call if we miss it, and we have 24 hours to get there after we receive it.

After transplant, Brooklyn will be in-patient at the hospital for about 2 weeks (barring complications) and then we'll stay in the Chicago area for another 2 weeks (totaling a month) so they can keep an eye on her.  Then, we'll come back every week for a month for check-ups, then every other week for a couple months, and then eventually once a month until we reach the one year anniversary of the transplant.  So far, we love Chicago, and we love Lurie, so we hope it stays that way!

One more thing: before transplant, we have to be diligent to keep Brooklyn from getting sick, because she can't be cleared for surgery if she is.  (And because transplants are so time-sensitive, that could cost us a liver!)  Post-transplant, she'll be on immune-supressing medications to keep her body from rejecting her liver, so it will be very very easy for her to catch illness.  That being said, we are being trying to be super vigilant about not exposing her to illness and germs (short of putting her in a bubble).  EVERYONE wants to touch those sweet cheeks of hers, but we're asking everyone (kids AND adults) not to touch her face or tiny little hands.  Thanks for using your super-human willpower!  (Because you guys, she's just so dang adorable!)

Thanks for praying for her and for us.  God is so good to us, and we are enjoying this sweet post-home/pre-liver time to grow our attachments nice and strong.  :)

Monday, April 06, 2015

I've Just Seen a Face

{Psst: There's a new medical update over here today... }

The weeks leading up to seeing Brooklyn's sweet face for the first time are remarkable when I look back and think about them.

I was still sorting out the medical bills/insurance mix-up hassles.  Rhet and I had started back to school that fall, and we were adjusting to our new schedule.  I inevitably got a respiratory virus that was being passed around, and it took me almost a whole month to shake it off.  After it came back with a vengeance, I high-tailed it to my parents' house in Atlanta for help and rest.  We had fall break that week, and Rhet and I went early in the week and Nick joined us later for a few days.

The day we arrived, I had a missed call on my phone from a number I didn't recognize.  It's here in the story that I need to push rewind for a second...

****
A year and a half earlier, I had been praying for a 7-month-old little girl in China.  A friend had been advocating for her, and her picture just stuck with us.  Her file was not complete (nor was it being worked on at the time), so I just prayed and prayed for her family...and I prayed for us...that maybe we could be her family.  She had a medical condition I had never heard of before: biliary atresia.  I googled it and internet-researched it (yeah, the best kind of research right? ;) ) and just prayed.  Biliary atresia seemed big and scary.  And yet I just prayed....Lord, please find her a family.  Lord, please let us be the family.  Nick wasn't feeling it.  We had just gotten rolling on our Dave Ramsey quest--we still had all of our debt.  We didn't have any space for a new kiddo.  He didn't feel led to say yes.  And that is the way things go.  One person feels the pull, the other person isn't on the same page.  You live in the tension.  You pray and talk and one of you moves.  It requires lots of respect and communication and open hearts and a commitment not to harbor resentment, and it is really hard.  I think most adoption stories for most families probably include a piece of that.  But you move forward, knowing that you both have your family's best interests and God's leading on your hearts, and you'll make a decision...together. We decided that I could fill out a Family Profile for the adoption agency in order to find out more about her if and when her file was completed, but otherwise, I moved--this time was a "no."
****

So I listened to the voicemail from the unknown number.  A year and a half later, it is a representative from the adoption agency whose voice I'm hearing.  The message was vague: Can you please call me back?  I have something I need to ask you.  The voicemail was out of the clear blue and it perplexed me.  I stood in my parent's driveway, alone, just wondering.  I called her back and got her voicemail.  I googled her name--she is the coordinator for the China Hosting Program.  Ahhh, she wants to know if we could host a child next summer, I guess.  Um, lady?  Do you know we are already stacked on top of each other in our itty bitty house?  I dismiss the message in my mind.

But all week, my mind went back to it.  Is that what she really wanted?

I received a text from my dear friend Brooke, a matron of honor in my wedding, on the same day that I received the voicemail from the adoption agency.  The message says: We must talk.  Been way too long.  You've been showing up in dreams!  For real!  I figure it's a sign.  We played phone tag for the next couple of weeks.

The week at my parent's house was just what we needed.  Relaxing, recovery from illness, playing, sunshine, date nights, just enjoying being together. Nick and I even took the plunge and updated our "archaic" phones.  Our family of three drove back to Memphis at the end of that week feeling lighter and more restful.

Nick was unpacking the car that night while Rhet helped, and I flopped on the bed for a minute to stretch out from the long roadtrip.  I went to Facebook on my phone, and my eyes were drawn to the picture of a baby girl staring back at me.  A friend had reposted her picture from a China Waiting Child Advocacy page.  She was 9 months old.  With biliary atresia.  (Yep, I know what that is.  I've been sitting with that idea for a year and a half.)  Her name was Brooke.  (Brooke!  She's been having dreams about me...)  Nick came in the house with another suitcase and I called out to him, "Hey Nick!  Come look at this little girl..."

"Oh geez..." he mutters with a smile as he takes my phone.  He looks at her a second longer than usual.  "She is adorable," he says, his voice softening.  My heart leaps--NOT Nick's usual response.

I've written about what our decision-making process was like that week.  What I didn't include is that we'd seen a house we were interested in the previous week when we were in Atlanta.  We contacted our realtor and set up a time for me to go see it while Rhet was in school on Monday.  It was small--not much bigger than what we currently live in now.  But it was cute and staged well and it was in a neighborhood close to where Rhet and I went to school.  I brought Nick and Rhet to see it on Tuesday, and in those 24 hours between Monday and Tuesday we ran the numbers with our mortgage broker and talked seriously about living there.  There wasn't a lot of room in the house to play, but it had a big yard.  There wasn't room for family/friends to stay with us when they visited, but we could just pile into one bedroom and put our guests in the other.  There wasn't an extra room for an another kiddo, but we could just put Rhet in the master bedroom with the alcove off of it and put a crib in the alcove.  We all walked out of the house talking about the purchase.  We promised to be in touch, Nick got in his car parked on the street and waited for us to back out of the carport, which I'd parked under due to the rain.

Scrrrrraaaaaape.  My driver's side mirror scraped along the side of the house.  AUGHH!  I immediately re-centered the car and tried again.  Scrrrrrraaaaaape.  My passenger's side mirror scraped along the other side of the carport.  No no no!!!  I can't explain what physiologically and emotionally happened to me in that moment.  I know I'm sounding melodramatic, but as I finally got the car backed out the carport and backed down the driveway and scrrrrrrrraaaaaped the bottom of the car as I pulled onto the street, it was like a clean break.  I rolled down the window and said to Nick, "Did you just see that?"  "Yeah, bummer," he replied.  And in my mind, it was done.  There was no way we could buy that house.  The scrapes on my mirrors had just snapped me back to reality.  Nope, not our house.

Now as I think about that day, it feels like God was saying "You can NOT buy this house."  There wasn't enough room for Brooklyn over the next 5 years, and more importantly, if we had put that sale into motion, we could not have pursued her adoption.  The agency wanted someone who was already paper-ready for a China adoption (meaning their dossier was already sent to China).  We were not, but we promised to move swiftly.  USCIS requires that you re-submit paperwork for any address changes--we would have had to wait 30 days to close on that house and then get new clearances on several different levels.  It just would've set us too far back.

The day after we committed to pursuing Brooklyn's adoption, I finally got in touch with the woman from the other adoption agency with whom I'd been playing phone tag for a good two weeks.  She was actually calling to offer me a referral for a little girl with congenital heart disease.  My jaw dropped.  What if I had answered her call that first day of fall break?

****
I've just seen a face
I can't forget the time or place
Where we just met

She's just the girl for me
And I want all the world
To see we've met
Mmm, mmm, mmm, mmm mmm mmm

Had it been another day
I might have looked the other way
And I'd have never been aware
But as it is I'll dream of her tonight
La, di, di, da di di

Falling, yes I am falling
And she keeps calling
Me back again

Saturday, March 28, 2015

Medical Update, Web Address Update, and a Heap of Gratitude

There is a new medical update on our page--Brooklyn's hernia surgery was moved up a couple days.

In other news, you can now access this page with the old web address OR my new one:
www.jessefaris.com

Also, as I sit at this desk with four stacks of unopened and unused thank you cards, all ready to send to all of you, I just want to say: thanks.  For your open hands, for your constant prayers, for your selfless help, and for your crazy grace that has me feeling so grateful without a chance to catch up and send a proper thank you.  Until I get there, know I'm feeling it!

Adopting Rhet: Click on the timeline above to read more