Nov 25, 2013

Adoption conversations

Since being at the adoption retreat, I’ve started some very interesting conversations with my children.  Now let’s start with the truth … we talk about adoption ALL THE TIME.  It’s nearly impossible to step out our front door without it becoming very obvious something is unique about my family. 

There are no secrets.  They know about their adoptions.  They know as much about their birth story as I feel they can handle per their maturity level.  (My rule of thumb for determining that?  If they can articulate the question, they can handle the answer.) 

But even still, by bringing it up directly this week, some new conversations were hard.  Good conversations. 

 
One with Kaley (14, adopted at 2 months) came around because she has a new reborn collectible doll.  She saved up her money for this very expensive doll and bought it.  It’s 2 ½ pounds and one of our friends is a NICU nurse.  She said it was just like holding one of her NICU babies.  Kaley asked me, “I know I was little when I was born.  Was I in NICU?”  I told her the part of the story that I knew. 

“I don’t know.  I’ll tell you everything I know.  Remember how I told you that you were born at home and your birthmother called the Ambulance? And she said she wanted you placed with the Safe Haven program for adoption.  They took you to St. Joseph hospital and you were there until you were 8 days old when you went to a foster home… etc.  But I don’t know if you were in NICU or not.  It’s not in the birth records that I have.  You can get those when you’re 18.  I’ll help you if you want.”  She asked why we couldn’t get them now and why I couldn’t get them.  And we finished that conversation. 

A few minutes later, she asked, “Do you have your birth and adoption records?” And I said, “Remember? I wasn’t adopted.  I grew in Mimi’s tummy and stayed with her.”  “Oh, that’s right.”  And I proceeded to remind her that most babies stay with their “tummy mommy”.   That adoption was a very special way for kids join a family.  How only when the birthmother can’t parent the child, THEN they place for adoption, etc.

And she got very sad.  Visibly upset.  So I continued.  She was holding that precious baby doll.  I asked her, “If this baby had come out of your tummy, would you want to be it’s mama?” Of course.  And I tried to leave it with how much she was wanted.  How she will be a great mother one day.  The whole time I’m praying I’m saying the right things and not breaking her heart further. 

But it’s there.  It’s always RIGHT THERE. 


The conversation with Zoe (age 8, adopted at 2) was her asking for her adoption story again.  She’s always eager to hear any and every detail.  Thankfully I have quite a bit, especially considering she’s adopted from China where most people have very few details.  She could hear her story 5 times every day without tiring of it.  So we did. 

 

Manny (age 4, adopted at 9 months) isn’t really interested in adoption related stuff yet.  He’s met his birthfamily (it didn’t go well).  And I don’t think mentally he “gets” it.  I’m always ready and willing to start the conversation with him … but for now … he’d rather play with his ipod. 


Then there’s the conversation with Sam (12, placed with us at 19 days).  He said the only real conversation he ever had at school about adoption was this.  He and a friend were discussing family dynamics.  The friend said it was really rough because his parents were divorced and he felt he had to choose between parents.  He asked about Sam’s situation.  Sam mentioned he was adopted and lived with both of his parents.  And the friend said, “Oh man! You have it way rougher than I do!”  This kid actually felt sorry for Sam.  And Sam had to straighten him out about how he has a great life. 


Next was the conversation with Luke (10, placed with us at 2 days old).  He said he NEVER thinks about being adopted.  He forgets he is.  The only thing that he finds challenging is that he lives with siblings who are another race.  I carefully put my toe in that water.  He articulated that if the kids were all White, then no one would ever know they are adopted.  But because we have several races in our family, it comes up ALL THE TIME.  He’s a little more private and would rather it stay that way. 

He also added that he thinks that race is the reason he and one of his siblings fight sometimes.  Again, carefully pulling that string, he said that maybe it’s because that kid is a different race that they have struggles in our family.  I didn’t validate nor negate that feeling.  I found it interesting.  I personally believe it’s all about the early losses and traumas this child experienced that cause them to act wacko, not race.  But by having this conversation, I realized how a 10 year old is perceiving his upbringing.  Fascinating!   

And then there’s the very, very long conversations I’ve had with Jacob (15, adopted at 18 months).  Some highlights:  He said he never had considered meeting his birthmother.  Had no interest.  But as the thought dwelt with him, he said maybe his cousins or other distant relatives.  I found that interesting.  I didn’t ask why.  Just let him dwell.   

As time passed, he realized … He likely won’t have much in common with this extended family.  Jacob is VERY interested in all things history and government and politics.  He is VERY convicted of his beliefs (way more strong leaning than I am in fact).   He is even starting a political blog for teens.  He was 14 at the last presidential election and was horrified at the low information voters.  He realized he will be old enough to vote at the  next presidential election (just by a few months) and would love to reach out to others in his age group and start the political dialogue.  (Oh Heaven help me! LOL)

He actually made the statement, “I think of myself as White.”  And I about choked on the hot tea I was sipping.  I had him clarify and realized that he knew he was Black but that he has rarely found an African American that is politically “right” leaning and so he just assumed it’s a “White” thing.  I had NO clue he felt this way and was able to get him hooked up with a few people who are people of Color AND politically more conservative. 

I felt like I have failed him as his mother.  I try very hard to expose him to Black culture and his heritage (the best a white, almost see-through, Mama can do).  Like for his 4th birthday, we had numerous families over who were White and had adopted African American kids.  In fact, my nephew was the only white kid there!   

But like a few weeks ago, my husband and Jacob went to visit a (Black) family Dan knew in college.  Jacob was trying to find things in common with their teenaged kids.  He liked the music and the spirited dances they all did together.  He shared how he liked history and the teenaged son said, “I only study BLACK history.”  Jacob shared how he thought all history was interesting and that by studying it all, he could gain a better understanding of all humanity.  The other kid basically called Jacob a sell out for not studying ONLY Black history. 

There have been many times that I mourn that I have no clue how to teach my son “How to be black” but … it hit me one day.  I don’t teach him how to be male.  Or tall.  Or bearded.  It just IS.   Maybe I can just teach him to be a Godly man.  How to be kind and a hard worker.  How to be generous and loving.  How to be the right kind of man so that some day he can be a great husband and father.  THAT I kinda know how to do. 

I thought maybe we were doing alright in raising him “Ebony in an Ivory world” (to steal a line from a new friend, Laura). 

And then THIS conversation happened.  And I’m right back at square one, wondering what the heck I’m doing.  Praying I’m not screwing him up too badly. 

There were more conversations this week.  These are just a few of the moments on my journey on this road of adoption. 
Adoption is not for the faint of heart. 

Nov 19, 2013

If you want to go far... go together


All through the night while sleeping, my brain was still “On” apparently as I awoke with multiple thoughts immediately flying around.  In my last blog entry, I referred to the adoption conference called “Joy for the Journey”.  And how something was deposited.  It’s like a computer “upgrade” that happens.  You’re not sure what all is new yet though you see some obvious things right away, you know there’s more. 

I woke up with An African Proverb on my mind. 

 

Another reason I love the word “Journey” in the title of the ministry “Joy for the Journey”.  The world in general, the adoption road, the road with kids with special needs, the one with teenagers, the one with hurting people … ALL these roads are long and hard.  We must do it together.  (All of my books written thus far have had the word JOURNEY in the title!  Clearly, I love that word.) 

I mourn the loss of the days my grandmother’s generation talked about.  Group of women sewing a quilt together perhaps.  They’d sit around and chat.  Maybe one would say how they’re struggling with an issue.  Another shares a brownie recipe.  They laugh.  They cry.  They share.  They bond.  Community. 

We’ve lost that in our modern age.  My husband and I have a bit of a similar thing in our house church.  But it’s not quite enough for my needs.  And besides, what about all those people who have nothing like it at all.  How do we create community?

I shared at the conference about what it’s like to get DISCONNECTED.  I shared part of my story about how life circumstances and “Duty” came first and relationships came second.  And I ended up isolated.  Broken.  Empty.  But I got all my jobs done. 

Most of that disconnect was my fault and the circumstances of life.  But part was because we don’t do this any more.  People see how busy someone is and they don’t want to bother them.  Since when is a friend a BOTHER??  I think people need to see busy people and think how they can help share the load so they can both go further.  But we need to retrain our brains to do that. 

We spend time on Facebook … but how much of that is REAL versus pretending.  We’re all guilty of that.  We edit pictures to crop out the dishes in the background.  We take 5 pictures until little Johnny is actually not glaring at us and we only use that one.  And so it creates this IMAGE that all is well in my house when sometimes … it’s not.  It’s just not.  It will be.  But it’s not fine yet. 

And in our busyness of doing surface chats from afar, we think those will take the place of REAL connections.  Of sitting together in one place.  Chatting while the kids play in the background.  It’s impossible to hide my proverbial warts when you’re sitting right there with me.  You SEE them.  You also see my needs and I can see yours.  Maybe you have a missing piece to my puzzle and I have one of yours. 

Now don’t get me wrong … some of my best friends I have never met.  I know that sounds ridiculous unless you’ve experienced it.  But it’s true.  We have found ways to share the REAL but across the miles.  We don’t just crop out the stuff we don’t want the other to see in the telling of our lives.  We share it all.  And those relationships have kept me afloat many, many times. 

But there is something about being together in one place.  Sitting.  Eating.  Our spirits connect in a different way.  And after this weekend, I knew I needed even more of this.  It feeds my very soul.  And with that, I can be a better wife and mother. 

And maybe in those meeting times, I discover I don’t have to be perfect.  I can be real.  In fact, I’m always fighting for and talking about this.  If I go around pretending that everything is fine in my little world and you’re struggling, then it says to you that you are broken or less than.  Maybe you think you’re not a good Christian or not a good mom or are failing in some way.  Too little faith.  Not enough prayer.  Whatever.  When the truth is … you’re probably right where you need to be.  God has you in the palm of His hand and He’s working on you for His glory and His purpose. 

In contrast, if you see I’m a good, Godly woman who has a loving husband and amazing kids.  You see I’m a woman of faith with deep commitment to God and family … and yet … I’m struggling too.  Then maybe, just maybe, it encourages you. 

God is a redemptive God.  He takes broken, messy lives and hearts and puts them back together in the way HE wants them.  Years ago, in the middle of some really hard times, I wrote a song called “Catch My Tears” … Maybe I’ll dig it out and share the audio track for that.  But there was a line in the middle that changed my life.  I was given this line by direct inspiration from the Lord.  How do I know that?  Because I didn’t know this before I wrote the song. 

The line says, “You have a purpose for my heart and You are shaping me.”  Seems simple enough.  But to me it was profound.  It means that there is a very specific purpose in the Kingdom of God for ME.  And there’s a shape I need to be in to fit that purpose.  Right now I’m not in that shape yet.  Therefore He is molding and shaping me into my Kingdom shaped Purpose.  He’s working on you and your shape. 
And it hurts. 

It means letting go of parts of “Me” and exchanging them for Christ shaped parts.  The exchange is always worth it.  And we always get the better end of the deal.  But it’s a painful process.  I’ve found in my life that the faster I get to the surrender part, the less the pain though.  And in our minds, it seems backwards.  I’m not saying I get there easily or right away.  I’m saying I get there faster than I used to. 

It’s the reason we can’t compare ourselves.  Or judge each other.  God is working on me and helping me become the shape He wants me for the exact purpose I have in His kingdom.  Meanwhile He’s working on you for YOUR purpose and YOUR shape.   We have no clue where God is leading YOU by the life experiences on your journey.  But we can sure as heck support each other in the journey.  And that is what it’s all about. 
On Jacob’s 15th birthday, he asked why he had kidney disease and was on the autistic spectrum (Not   the words he used but what he was asking).  And I told him this very thing.  That somehow, having these things is what was going to help him get into the shape God wanted.  (Now of course we also believe in healing and we claim his complete restoration daily … but until we see that healing manifested in Jacob’s life, God has not stopped using this to help shape him.)

As a redemptive God, He sees the way big picture and we see the flea sized problem in front of us.  Of course it doesn’t seem flea sized to us.  And He taught me … if my problems seem too big, then I have made God too small in my mind and I need to go magnify HIM.  Hold HIM up, not the problem. 

While we were going through some of those roughest of times, I felt like worrying … a lot.  And God used a teenager in our church to preach a message about Jehoshaphat.  Basically … God promised to fight their battles if they would just praise Him.  And the Lord is faithful so that happened. 

I realized … why can’t I claim that same promise??  So every time I’d start to feel the fear grip, instead of indulging in the fear, I’d set myself to praising.  Sometimes I’d put on a cd and just worship.  Other times I’d be up dancing and singing.  Sometimes I’d sit at the piano and plunk out a tune.  It’s how hundreds of songs were birthed.  (Can you tell that I had a lot of fear and worry? LOL)  And one of those was the one I just referred to. 
He was healing me through those moments of praise.  He was equipping me in that intimate time. 

This redemptive God also has a non-human view of time.  I often thought He was late.  VERY late.  But He would always ultimately show me that His timing was indeed perfect.  Just like a few months ago and there was the fire on our porch.  I’d have preferred He just put it out with a gust of wind or a small rain.  No need to bother me.  Just take care of that please.  But instead, I needed to be reminded of a few things I guess.  So He told Dan to go look outside.  And we have learned to be obedient.  The fire was manageable.  5 minutes earlier and it would have been too small for Dan to notice and 5 minutes later it would have been in the house.  Timing. Guess He’s pretty good at it afterall.
And so it leads me full circle.  I have to think about the timing of this weekend.  Why NOW?  Why was this community of Sisters brought together at this time?  And what will come of this? 

It’s not enough if we all just heard some funny or sad or inspirational stories.  It’s not enough to have gathered.  It’s not enough to have met new people.  There has to be change in the way we think, the way we behave, the way we believe, the way we respond, the way we mother, the way we love, the way we live.  This weekend has to be something that carries beyond a few days or weeks.  It has to be a new way of living.  We have to yield to the process of becoming the shape God wants us for the “us” sized  Kingdom purpose.  Warts and all. 

Nov 17, 2013

Joy for the Journey Retreats and Home

I sit on a plane wondering what God just did. What exactly was just deposited in me?  I spent the last few days in a whirlwind.

That's the middle of the story. So let me start further back. I have stopped going to or speaking at adoption conferences. It's been YEARS.

Why? They advertise it as a certain thing but I typically find it's not as promised. It's either too clinical (education only and usually adoption 101 type of topics). Or it's too sappy. (Only feel good stuff with no meat.) Or it's an agenda pushing type of meeting.

I can't do any of those.

So when Pam emailed me (she found me because she googled), I knew this one was going to be different. I said yes.

Joy for the Journey Retreats... http://joyforthejourneyretreats.org/  It's up near Baltimore (Sandy Cove to be precise)

Then months later I got a phone call from Pam and Cheryl. They said they'd been planning and praying about the topic assignments.

"Outrageous Faith". And I was like "great! ". I was so excited and my mind and spirit filled instantly with thoughts.

They then told me the second topic "The connected mom" and I told them I wasn't sure I was qualified to give that talk. Thry said God had given it to them so it must be so. I said I'd pray about it.

I went to the conference with the faith talk and two versions of the connected mom talk.

It wasn't until the night before, around midnight that I felt God lead me to give the harder of the two versions of the talk. I was willing. But I felt that as the last speaker, it was my job to make them laugh, connect the pieces and send them out on a high. To inspire them. This was NOT that talk.

But God had other plans. He knew who was there and what they needed to hear. So I did what I always do ... dove in head first.

This post isn't about the content of my talk but let's just say I showed my proverbial undies. And I did something I've NEVER done in a talk ... I cried. Not that big blubbery sloppy kind. Not the ugly cry. But there were tears. From me and the audience.

And I can only hope that God was glorified. That God was lifted up. That His Kingdom gained some ground by my brokenness.

This adoption stuff ... It's hard sometimes. It gets REAL in my house. I rarely share much of that on here. Probably because I don't want to discourage anyone from adopting. But it's always right there.

This weekend was a beautiful, deeply spiritual time .  During the conference I got to sit and talk with others. To hear their stories. To connect.

And because there was no agenda of man, God's agenda got to be heard!! Before the first session, I heard the conversations. They were light and surface and very "all is great in my life" Pollyanna stuff.

Then the first speaker went head first into infertility. And I shared about special needs and looking at the waves of life vs Jesus (based on Peter walking on water).

And from there, I heard the conversations turn to "I deal with that issue too" and "how did you handle that?"

We got into race issues (how can you not with transracial adoption) and the point of view from adult adoptees. (Who all had lots of unique stories).  We laughed. We cried. We worshiped. We ate. Every waking moment we were immersed in this bubble of kindred spirits. A womb of sorts.

And while in that  environment, the other ladies and I completely free. No question off limit. Hearts open. Connected.

The whole weekend, I kept feeling like something was being planted, "conceived" if you will. And I'm so excited to see what God births!  I've NEVER experienced such a deep connection with a group of 100 people INSTANTLY.  We were of one mind, one body, one spirit, one Lord, one faith, one hope.  The BODY of Christ.  And I've been in a community of believers where we have that community but never experienced it instantly. 

So back to my plane ride I'm on as I write this. I wonder where all of us attendees go from here. I can't help but feel this story isn't over.

I just know ... For a weekend, I was surrounded by like minded people who are willing to get their hands dirty. They stand and be counted when many cower. They are warriors. And like most warriors they have the scars to prove it. We were loving on each other and sharing the heart of the Father. And I don't want to lose them.

I can't help but think THIS is what it looks like to BE the Body of Christ. To destroy the works of darkness. To propel forward the Kingdom of God.

I'm sure He is a Proud Papa this weekend. Saying , "well done, my good and faithful servants".


Now on to some of the behind the scenes stuff ... Let's start with some weirdness on the plane as I type this... A woman starts to hyperventilate. Hear her tell the flight attendant she is claustrophobic. She's a mess. She is sweating profusely and crying. Got a bag. The whole none yards.

I get out of my seat and tell her I'm Christian, could I pray for her. She was like, "do whatever you have to do."  I took that as permission. So for about 6 rows, they could hear me pray.

Let's just say she didn't give any glory to God when it IMMEDIATELY stopped. But I sure did.

That was an hour ago and she's happily playing a game on her Ipad.

Thank You, Lord. You are good.

Secondly, on the way TO the conference I was blessed with an exit row and an empty seat next to me.  How cool for an almost 6 foot person. 

But on the way back, as circumstances would have it, I was one of the last people to board.  As I got on, I could see my assigned empty seat.  It was next to a very, very large lady.  In fact she was so large she covered all of her seat and half of mine.  Really?  How am I going to squeeze my very non-petite hiney in that part of a seat?  And the seat in front of me was broken so it was laying back extra far.  So picture me ... knees in my nose.  And because there was a lady next to me, I wanted to continue the conversation and that instant bond thing we had going.  But ... well ... let's just say I instantly knew we would not be BFFs.  :)

I spend the two very uncomfortable hours in this moment though, still wanting to be in the cocoon I'd just left.  So I typed this blog entry out on my iphone on the notes page. Yes, all of these words typed out by my index finger on the right hand.  Why? I knew I needed to capture it while it was still fresh in my spirit.  I knew I'd hit home and immediately be hit with their needs, the needs of a family when the mom was gone for 3 days.  And I wanted to be there present for them. 

The hour home from the airport was uneventful.  Just my spirit trying to sort out what was different in my spirit, mind and soul.  A song kept playing over and over in my head.  A song I hadn't thought of or heard in over 15 years.  I tried to find a Youtube video with it singing it the way I had heard it but couldn't.  I'll put the lyrics on here anyway.  I was singing at the top of my lungs and weeping. Because THIS is what we experienced this weekend. 

Sister let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too
 
We are pilgrims on the journey
We are sisters on the road
We are here to help each other
Walk the mile and bear the load
 
I will hold the Christ light for you
In the night time of your fear
I will hold my hand out to you
Speak the peace you long to hear.
 
I will weep when you are weeping
When you laugh, I’ll laugh with you
I will share your joy and sorrow
Till we’ve seen this journey through.
 
When we sing to God in heaven
We shall find such harmony
Born to all we’ve known together
Of Christ’s love and agony 

And before I knew it, I was home.  Daddy didn't tell them when I was returning. They were out playing tennis. (Yes, don't be hatin', it was 81 at 7:30 pm).  I walked in, they yelled "Mom!" All but one of the ambulatory kids rushed to me for hugs. (Not sure what was up with the lone holdout.  I got my kiss and hug anyway.)

Manny however, yelled "Mama" happily and then burst into tears. He said, "I thought I lost you!" (Oh my heart).  Kaley says he's been saying it over and over.  That he was afraid he misplaced me or that he somehow didn't keep good track of me so I got lost.  Like it's his responsibility.  My heart broke further.  I assured him I didn't get lost.  That he couldn't possibly lose me.  But in light of the heartfelt things we had just heard, I couldn't help think about the impact of adoption and loss and trauma on his tiny fragile spirit.   (He's had MANY.)

After a few minutes dealing the Little Man, I took off my jacket and joined them in tennis. They all started telling all their stories from the weekend. And we just picked up where we left off. 


I think (Hope) that my story resonated with people.  I believe it made a difference and contributed to their walk in the Lord and with their husbands and kids.  I know my spirit has been added to.  (It's like a computer "Upgrade".  I know something's different, I just don't know what yet.)  But like I said in the conference ... the most important job I will EVER have is these 6 children who call me Mom.  It's the most important ministry.  It's the most Kingdom building work I'll ever do. 

And with that, I was back where I belonged.  Forever changed and Home.





Nov 11, 2013

Princess Kaley 14

14 years ago today, "Mary" (not her real name) gave birth to her 6th child.  This child was a little girl, 4 pounds and 17 inches.  She was born at home.  Then the paramedics were called and "Baby Girl King" was taken to a local hospital.  (You're called Baby Girl or Boy and the last name of your biological mother if she doesn't give you a name.)  Ironically ... this baby was taken to St. Joe's.  (If that sounds familiar, it's because it's the hospital where we take Manny.) 

Baby Girl was discharged on 11/19 to a foster home.  A few days later it was discovered she had a brother in foster care "Baby Boy King" and she was moved to be with him. 

Meanwhile, across town, a family was working feverishly to get their paperwork and classes completed to be able to adopt a child with special needs from foster care. 

Early February, we heard about an 18 month old boy available for adoption.  We said we were interested.  At our meeting on Feb 12, 2000 ... we met the boy who would be our son, Jacob.  I played with him the whole meeting on the floor.  As we were done with the meeting, they said, "You know it's both or none."  And we were like, "Both what?" 

They said, "He has a 2 month old baby sister."  Uh ... no, as a matter of fact, we did NOT know about her!  Turns out she was in the room the whole time.  I never even got to see her. 







Dan and I decided to take the weekend and pray about it.  Afterall, we had NO children.  We were thinking of adding ONE child.  But two?  Both with special needs?  A newborn and toddler?  Different race?  It was a lot.  But I knew.  I sat in the car knowing those were my children.  I tucked that in my heart. 

On Feb 14, we sat down and had our heart to heart.  Dan shared all the reasons that we shouldn't adopt them ... and then he added that ALL of them were based in fear.  None were justifiable reasons.  And we said yes. 

It was at that moment, I knew I was going to be a mother for the first time. 

Over the next couple of weeks, we told the social workers of our intent to adopt them both.  They tried to deter us.  They were all Black social workers and we are of course White.  They wanted them to stay with a Black family.  I bluntly asked how many Black families had come forward for them?  NONE.  In fact, we were the ONLY family who had ever come forward for them.  I finally quoted them the law about non-discrimination.  I guess they realized I wasn't as "blonde" as I appeared!
 
They finally agreed they would be placed with us.  We just needed 3 more weeks of paperwork.  So Over the next 3 weeks, I visited them as often as I was allowed. Basically every morning until bedtime.  I fed them breakfast, played with them, took them places and put them to bed in their foster home. 

It got harder and harder to leave them there.  They didn't want to go!  They wanted to stay with me. 

March 23 Kaley came home for good.  I remember sitting there just staring at her.  She was still very tiny and a bit frail.  She had a lot of medical issues.  But she was perfect.  She was amazing.  And she was MINE. 

I was there for first crawl, first steps, first tooth.  I missed the first few months of her life but truly I missed very little and for that I'm very grateful. 

Over the years, she's gotten stronger.  She's not as medically weak any more.  She rarely is sick.  She is smart and funny and witty and loving and kind.  I know no other person like her.  Her heart is full.  Her compassion is complete.  She amazes me daily. 

On her 12th birthday and again on her 13th birthday Manny ended up sick and hospitalized.  She never complained.  We made it up to her best we could on other days but ... still. 

So today, I am thrilled to announce that Kaley got to celebrate her 14th birthday NOT in the hospital.  We did part of her celebration yesterday.  Grandparents came by and brought her presents and ate cake with us.  Today we went shopping and found a few special things for a special young lady. 

I can't help but reflect backwards on the past 14 years.  I have never once second guessed our decision to say YES to our little bonus baby.  We thought we were getting one amazing son and we ended up with an amazing daughter as well. 

I also think about how difficult my life would be currently without her.  I've written numerous times about all she does for me, especially with Manny.


But I also am reflecting forward.  What will the next decade bring?  Driving a car? Boyfriends? Husband? Children of her own? Career?  Missions?  Traveling? 

I have no clue.  I just know that I'm so happy to have a front row seat.  I have a feeling that whatever it is she chooses, it will be extraordinary.  Kaley loves with abandon and the world is in dire need of people like that. 

So I say to you, Kaley.  You are so very precious to me.  I am proud to be your Mama.  I am excited to walk the next years beside you.  I will always be your biggest cheerleader.  And I hope you never forget how much I love you.  You are a blessing to the world.  And a blessing to me.
 

Love, Mom

Oct 30, 2013

Get Well NOW


* Disclaimer ... not my normal type of post. 

Every night, Dan and Manny spend Daddy/son time together in Dan’s office.  They play toys and watch a little TV.  Last night, I happened to walk in to use the fax machine and Kipper was on.  I wasn’t listening attentively but then suddenly a phrase jumped out and struck me. 
Kipper was reading a “Get well” card.  He said, “I don’t want to get well soon.  I want to get well NOW.”


And it hit me!  Isn’t that the truth? Don’t we all?

No one wants to suffer for hours, days or longer when we could be feeling better instantly.  And I wondered why we have ever used that phrase of “Get well soon”? 
 
 
And the part that struck me most was regarding faith and prayer.  I think a lot of Christians actually pray like that.  They have little to no faith in a healing God.  They pray prayers like, “I hope you get well.” Or “If this be God’s will that you get better”.  Or they say, “I’ll pray for you” but then never do.  They’re praying for the “what if God doesn’t answer” plan. 

 What if we stuck our faith out there?  What if we prayed like we actually BELIEVED the person could be healed?  Would more people actually be healed?  Even some “Faith healers” could do better in this department in my opinion.   They often say the right words but then almost put a disclaimer on it just in case the miracle doesn’t happen.  Does God need an “Out?”

I don’t think so.  I truly believe we need to stick our faith out there more.  Hope BIG.  Pray BIG.  Afterall, we serve a HUGE God.  What if we gave Him room to operate in our lives on a Grander scale?

And at the same time,  how about James 2: 14-17? 
Paraphrased … What good is it if you say you have faith but do nothing to help.  What if you see a person without clothes and food and all you say to them is, “I hope you find some clothes and food” and do nothing about their physical needs , what good is it? Faith without action is worthless. 
 

As you can imagine, with a family like mine, I spend a lot of time thinking about healing, faith and actions.  Many people seem to find that right “balance” in regards to our family.   But honestly, many do not. 

I think most people just don’t know what to say.  How to say it.  Or what to do.  I think it’s not a lack of interest, it’s a lack of understanding.   (And I’m not saying people need to help us.  I’m not asking for help.  I’m talking about the ones who actually are TRYING to help us or pray for us. Unsolicited.)

I talked to someone the other day who said quite honestly to me that she wished she knew what to say or do for me but she couldn’t even spend the energy THINKING about our family.  Why? She has two healthy kids and is overwhelmed so her brain fritzes out even considering thinking about what my family dynamic would be like. 

I get that on some level.  But on another level, I think it’s a cop out.  I didn’t ask this person for help.  I wasn’t complaining to her.  I didn’t act overwhelmed around her.  She just came by the house to pick something up and I guess she felt guilty or something. 

And the whole conversation seemed to me very, “I hope you get some clothes and food”.   It’s as if the conversation had some benefit to HER because it certainly didn’t benefit me in any way.  But I kept wondering what she got out of this?  Why did she even bring it up?  What was the purpose of mentioning it at all?  I’m still at a loss actually. 

 But back to Kipper.  Manny’s health is as stable as he’s ever been in most ways.  His breathing is steady.  He’s stronger.  He’s been in the hospital very little.  Mostly good news.  But there is one area that seems to be declining (not ready to share yet).  And it’s troublesome.  It’s one of those that if God doesn’t intervene in a powerful, miraculous way, this story doesn’t  go well. 

This morning, for example, he woke up crying uncontrollably.  That’s new.  It’s not like him at all.  He’s normally a chipper thing … even when in pain or sick.  But this new thing is painful and progressive.  While he’s awake he’s in control of his emotions.  But when he’s in the twilight between awake and asleep, his emotions sometimes take over and it overwhelms him. 

I fight so hard for his quality of life.  I fight for pain control.  I fight for peace of mind.  And right now, it seems a losing battle. 

So imagine I said to him that I wished for him, “Get well soon”.  Seems cold and distant.  Instead, I would rather say, “Get well NOW”.   If it were in YOUR power to do that, wouldn’t you do that??  Wouldn’t you do anything in your power to get the job done NOW? (Yes, I know that timing is everything and not everything can get an instant "NOW" answer.)

My points?

1)      When someone is in need of something and it’s in your power to do something physically for them, do it. 

2)      When someone is in need of prayer, don’t just say you will pray, but actually DO it.  In fact, don’t wait until you get home in private.  Grab their hand and start praying right then and there.  If it’s public, you can do it quickly and quietly if you need.  But it is (usually) much more powerful to the person to actually HEAR the prayer.  Feel free to say you’ll continue to pray about them and the situation.  If they’re on the phone, pray then.  If it’s via email, don’t just tell them you’ll pray, type out a prayer and send it to them.  In other words … be INSTANT in prayer. 

3)      When you pray, do it with faith.  Do it like you are praying to a God who is kind and compassionate and capable.  Lay it at HIS feet. 

4)      Don’t be afraid of people who have a LOT on their plates.  They are just regular people who are putting one foot in front of the other.  Their load may be larger than yours but they don’t need extra burdens like judgmental statements or “you’ve got your hands full” kind of observations.  They need encouragement, a listening ear, acts of kindness, etc. 

5)      Don’t compare yourself with others.  It’s never wise.  Afterall, we can only know the outside tip of the iceberg about what others are going through.  We never know what it’s like to be walking in someone else’s shoes.  And it’s rarely like we would imagine. 

6)      Be kind at all times.  You truly never know what is going on in someone’s life.  And everyone is always dealing with something.  In fact, it’s probably best to assume they are and treat everyone with extra kindness than you think they deserve.  (Like someone cuts you off in traffic?  Instead of turning all type A and road-rage-aholic, perhaps you could give them the benefit of the doubt?  What if you knew they were  in a hurry because they just got word their daughter was in a car accident and they were trying to get to the hospital?  Would that change how you felt about them?

7)      Have the attitude of “Get well NOW”.  See if that doesn’t shift your thinking.

 


 

 

 

 

Oct 14, 2013

2 year anniversary


Two years.  TWO YEARS for what what supposed to be “temporary” and “Likely about 3 weeks.”

I had no clue how much my life would change on October 13, 2011.  The vastness of the implications of that day are surreal.  

Here’s a quick synopsis of the events leading up to that day.  

Manny was born and had troubles eating from birth.  It got severe by 8 months and he was placed for adoption and hospitalized.  It was then they did a swallow study and gave him a Gtube and a Nissen Fundoplication.  The Gtube is because he was aspirating the formula (means some was going down his lungs and not his stomach.)  The Nissen Fundoplication (also known as a “Nissen” or a “Fundo”) was because he was having some severe retching and that was ending up in his throat and also into his lungs from there.  Aspiration pneumonia is not pretty, especially for a child with weak lungs.  

We picked Manny up from the hospital the day he was being discharged from these procedures.  It happened to be the day he turned 9 months old.  

From the very beginning, he was having troubles with what I called “retching”.  The episodes were scary. He was losing his breath, he’d gag and turn bright red, eyes would water and he looked scared.  They would last for hours sometimes.  And he would often crash after for hours.  I got numerous of these on video.  Doctors didn’t seem concerned or perhaps they just didn’t know what to do.  But I tucked this away in my heart.  

Over time, the episodes became more severe and pronounced.  A test was done and showed his stomach was not emptying at all.  50% of stomach contents should leave the stomach in this hour study and less than 1% left.  We thought we had the solution.  We did a GJ tube.  So rather than food going directly into his stomach, it would go into the bowel.  

This never worked.  There were problems from the start.  The pressure in the bowel would send food and even the tube in the wrong direction.  His episodes of retching became worse.  

At one point, it was so dangerous, I thought I’d end up killing him just by feeding him.  Local doctors seemed stumped so we were referred to a different city for treatment. They initially thought is was a malfunctioning jtube.  Then they thought maybe I was making the whole thing up or even worse, making him sick.  

I was told numerous times, “Anatomically, that’s not possible.”  They were saying I was lying.  I was about to be discharged.  Then the head of the GI department was consulted and something in my story resonated with him. He took the case.  He immediately dismissed the rest of the team that had not listened to me.  

We started fresh.  I told him EXACTLY what Manny would.  I showed records. I showed videos.  I had them try the experiments themselves.  They saw what I was talking about.  They didn’t understand it but they saw it.  

He was very, very ill whenever fed.  We tried lots of different things ... speed, amount, type of formula, etc.  Everything made him do these episodes.  Some just did it worse than others.  

The only thing that didn’t cause troubles was pedialyte.  Problem is ... it’s only about 100 calories a day at the rate he could tolerate.  He wasn’t getting dehydrated this way but he was getting no nutrition and was losing weight fast.  

Eventually it became clear ... something had to be done.  Meanwhile I was researching and discovered that Total Parenteral Nutrition or TPN would have to be started. 

I remember the day I felt like this was inevitable. It was a cloudy, gloomy day.  I sat in our hospital room and just cried.  It was a very somber day.  

Why?  Because TPN is very difficult on the body.  While some people can live a lifetime on it with few to no complications, it’s not always that easy.  I knew that this decision might be one that was shortening his life. It was a heavy decision.  

When I asked if we were to TPN yet, she assured me we weren’t there yet and they would keep trying.  But I knew it was just a matter of time.  

Sure enough, on October 13, 2011, the doctors determined he had lost too much weight and was too weak to continue on with the experimental feeding.  We would have to start TPN “Temporarily.”  As the head doctor said, “To get him out of nutritional debt.  Then we can start again.”  


What we all looked like back then.  

Well ... two years later and we are still on TPN.  In fact, we have yet to have anyone even give a possible solution to weaning him off.  

I still have hope this isn’t lifetime, but it sure looks like it will be without divine intervention.  (Thankfully I believe in that though!)

I call TPN the biggest miracle that I hate.  

It’s certainly a double edged sword. 

On the one hand, it’s very hard on his body.  Within 3 months of being on it, he lost his gallbladder and he barely survived the event.  His kidneys are now damaged.  His liver is starting to fail.  And that’s not to even talk about all the crazy Vascular Access emergencies like broken lines, sepsis, blocked lines, etc.  Those events have been the most life altering events of all!  

But at the same time, TPN has given us freedom from the heartwrenching episodes of retching.  He’s stopped looking at me with those eyes and begging me to stop choking him.  His heart rate no longer goes close to 300. He never turns blue from lack of oxygen.  He no longer has hour long sleeps where he has just “passed out”.  He’s stopped “drowning”. (The formula would go into his lungs and he couldn’t breathe.)  

I had a very frank discussion with our new GI.  I’d rather him die of liver failure than drowning. And while I say that very bluntly and very matter of fact, it was a decision that I came to after much prayer and many tears. 

So as I reflect back on these past two years, I cannot believe the incredible ups and downs we’ve endured.  They have been the 2 hardest years of my life ... BY FAR.  

And yet, I still have Manny.  

Happy Anniversary buddy. I love you with all my heart.  I’ll never stop fighting for you.  

Oct 9, 2013

Destination Nashville


Before I share the next adventure, Just for fun, How about a picture of each of the kids?
Haven't they grown??  

Jacob 15, Kaley 13, Sam 12
Luke 10, Zoe 8 and Manny 4



  




Destination Nashville ... 


Manny, Kaley, Zoe, my friend Ann and I went on a road trip.  Nashville was the destination.  We decided we would just drive until we needed to stop.  Our goal was north of Atlanta.  Once we got there, we decided we’d head on towards Chattanooga.  

By the time we got there, Manny was having troubles with his central line.  What kind of trouble you ask?  

OK you know how he is on TPN for 20 hours and off for 4?  He can’t go much longer than that or his blood sugars will crash.  Well, it was at the end of the 4 hours off and the line was “blocked”. It just wouldn’t flush at all.  Like cement.  

So decisions had to be made.  FAST.  We could stay at a hospital in Chattanooga ... but I needed to be in Nashville.  The last time this happened with his line, it was 3 days before we could use it again.  I didn’t want him admitted in a different city.   

Nashville was 2 hours away.  We decided to push it.  Go!  Drive fast but not so fast we get a ticket.  At least this way if he’s admitted, we will be in the city where I needed to be.  

During the next two hours, I was praying, asking others to pray.  I was troubleshooting all the things I knew to do.  I even contacted the Vascular Access team and asked if I’d missed any steps.  They said we needed to get to the ER and recommended Vanderbilt Children’s.  

We got to the ER and the intake person didn’t even understand what a Central Line was.  She just wrote “feeding tube clogged”.  Well ... let’s just say THAT would not be a life threatening emergency.  By this time, I figured Manny’s sugars would be starting to drop ... but they weren’t yet.  (Shocking).  

When we saw the triage nurse, he understood the severity of our situation and got us right back to the nurse.  She got us right back to the “Critical Area” and gave us the Charge nurse.  So yes, they got it. 


He's not even bothered when he's in a hospital he doesn't know.  Wow. 




I also loved that the staff gave me the respect to make the calls about how we proceeded.  For example, I knew that he would need an IV of sugar if his blood sugars started to crash. That would mean a peripheral IV stick (not as easy as that sounds).  But if they could unclog the line, we could avoid all that.  They left it to me to make the call.  So I held off.  

They asked why I was there in Nashville. I was there to be a keynote speaker for the Vascular Access National Convention.  I was in town to talk about stuff ... like this!  Ironic, no? 

Well, the prayers worked.  It was only a few hours and it worked!  It was about midnight by then and we still had no hotel but at least we were all in the right city and not admitted!  His sugars never crashed. That’s amazing all in itself.  

I’ll write a whole blog post about the Nashville Conference soon.  I’m waiting for a few links before I can post that.  Very cool.  

We were super duper careful with his line while in Nashville and the trip home.  We got home on a Monday.  Tuesday I took him to our local ER to get the line repaired. I laughed because I’ve got to be one of the only people who actually “plan” the ER visits.  Sounds crazy, huh?  

OK well, he gets off his TPN around 1pm.  He will be off for 4 hours.  The repair for the central line takes 4 hours of dry time.  See where I am going with this?  If I time it perfectly, he won’t have to have a peripheral IV.  But if we don’t plan this, it could end up being an admission and be lots of hours of poking for an IV site needlessly.  

So I got to the ER about noon.  Got through the check in process and triage.  By the time we were settled in a room and the vascular access team could be there, his TPN was ending.  

The repair went flawlessly.  We were sent home.  And just like clock work, I hooked him up.  All ER visits should be this calm! LOL  

This was the 4th repair on this line.  As I write this, however, his line is 20 months old.  It’s truly amazing how long it’s lasted without a central line infection.  I still celebrate the 7th of every month.  I am sure I’m not the only one who celebrates the “birthday” of a central line!  
Right before the Repair. Doesn't he look too comfortable in a hospital environment? 



This is a picture of him during a central line repair. You might have some questions about the line repair. The white piece coming out of his chest is his broviac central line. There was a part on it that got blocked and was causing it to balloon out. This means it would break any time.  

The IV team cuts the line and basically glues a new piece on the end. It's held together by silicon glue. 4 hours dry time. Then voila! Good as new.
 But trust me, when they cut that line, it always sucks the air right out of the room.  If for some reason they can't get it repaired, he'd need surgery and a whole new line.

This picture is right after the procedure but before she put the dressing (bandage type thing) over it to keep it sterile.

Like I said, this was the 4th repair on his line. Why so many? The thing keeping him infection free is Ethanol lock therapy but it's hard on the line. It's a trade off and worth the issues to me! 20 months and counting!