The Road to Atlanta

Four weeks ago, Benaiah and I relocated (temporarily!) to Atlanta, Georgia so that he could recieve treatment through an intensive feeding therapy program at a medical facility called the Marcus Autism Center.

Although Benaiah has grown MUCH taller over the past year - He's the tallest 2 year old you've ever seen! - he hasn't gained much weight - only about 2 1/2 pounds.

When we changed from infant formula to Pediasure in January, he began to get sick and vomit every day.

We couldn't put him back on infant formula, however, because it doesn't contain all the nutrients a toddler needs, so we were stuck with the Pediasure.

Because of his low muscle tone, Benaiah is limited in the consistency of the foods he can eat as well as the amount of food he can eat since his body seems to digest things slowly.

So not only were we stuck with the Pediasure, but we were dependent upon it in order for Benaiah's nutritional needs to be met.

The vomiting reached a new level in March and he was hospitalized for dehydration and failure to gain weight.

Daddy and Benaiah taking a stroll through the hospital

Multiple tests were run while we were in the hospital but nothing was ever found that could pinpoint why Benaiah was vomiting so much.



I don't like being in the hospital, Mommy :(

 

The nurses had to wrap his hands with diapers so that he wouldn't pull out his NG tube.
He didn't mind.  He enjoyed chewing on the diapers. :)


12 days later, we left the hospital with an NG tube in and with a more elemental formula called Peptamin Jr.


I'm so happy to be home!!!


Unfortunately, Benaiah continued to get sick, even with the NG tube and the new formula.

And that's when we heard the dreaded word:  G-tube

A G-tube, or gastrostomy tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

G-tubes serve a great purpose, but my "Mama gut" told me that this was not for my son...not right now anyway.

Doug and I began researching ways to avoid getting a G-tube and ran across several websites about Feeding Therapy Programs and how they aim to help kids with G-tubes become independent of them and how they help kids avoid getting G-tubes by helping them gain the skills they need to recieve most of their nutritional and caloric needs from food.

There are only a few of these programs around the country.  The program at Johns Hopkins and the one here at the Marcus Autism Center were the 2 that I was most impressed with, so it was a pretty easy decision to choose the one in Atlanta since it's closer to home and we have family and friends who live in the area.

Then the work began....3 months of doing paperwork, waiting, getting rejected because of insurance complications and an infamous "contract" that would never get signed, more phonecalls, phonecalls, phonecalls, waiting, rejected again, phonecalls, phonecalls....

Finally, we had to get our attorney involved in order to reassure all parties that the documents that were written and signed do ensure that money will be paid for services rendered - because it's not about Benaiah's health, but about whether or not payment will be made, right? Ugh! - and we finally got a start date of August 19th.

And that's how we got here!

Stay tuned to find out how things are going.... :)

Back From My Break!

I've enjoyed a little break from blogging since completing our 20 day celebration of Caroline's life.

But now I'm back and have so much to share....and so many things for you to pray for! :)

September 4th: Caroline's Wedding Day

Dear Caroline,

Was it the most wonderful thing ever imaginable?

Were you nervous, excited or calm as you walked down the aisle?

Was all of heaven in attendance or was it a private ceremony?

I wish I could have seen your smile.

I bet it lit up the entirety of the heavenly realms.

What did you do when you saw Him?

Did you run into his arms and burst out crying?

I think I will!

What did He say to you?

Did He have to say anything at all?

Or did you just automatically know how He felt about you?

I wish I’d been there.

I wish I could have witnessed the moment when you met Jesus…

Your Bridegroom.

My Bridegroom.

I long for my Wedding Day with great anticipation.

To hear Him say, “It’s over now, Elaine.  You are complete.  You are healed.”

And maybe…

Just maybe…

I'll get to hear your sweet voice call me "Mama".

I have soooooo enjoyed these past twenty days.

Remembering our time with you.

Honoring your life.

Nobody asked me about you any more after you died.

There was no reason for them to.

But not talking about you – not having any “Caroline” stories to share with others - was one of the first things I mourned after you died.

I catch people a little off-guard when they ask me how many children I have.

I don’t mean to make others feel uncomfortable.

But I can’t stand the thought of pretending like you never existed, so I always say “two”.

That way, I get to tell them all about you and your precious life.

My arms ache to hold you.

Sometimes in the middle of the night I wake up missing you so badly that I go into your brother’s room, swoop him out of his crib and hold him tightly just to soothe the ache that my arms feel without you in them.

My “arm-ache” may be soothed...

But my heartache never will.

Permanent hole.

Center of my heart.



Caroline, the only peace I have in living this life without you here is knowing that Christ died for me and my dirty, sinful heart…

My heart that needs so much more healing than your body ever did.

It will be washed clean once and for all one day

And I will spend Eternity with you.

I am also confident that God’s entire will for you was fully completed in the 20 days of life that He gave you.

That’s sometimes hard for me to understand.

And I don’t like it.

But I know it to be absolutely true.

You have changed my life, dear Beautiful Victory.

I will never be the same.

I love you, Sweet Caroline.

Mama

“We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.”  Romans 8:22-25

Come quickly, Lord!

Celebrating Caroline - Day 20

Memory #20:  Caroline’s Celebration of Life Service

I reeeeeally don’t like funerals or funeral homes.

So the leadership at our church took on the enormous responsibility of handling the details of Caroline’s memorial service.

                                                                                          

I can’t say enough about the staff at our church.

David, Rich, Kim and Neil literally put their lives on hold for four days as they prepared for the service.

When I think back to the meetings we had with them regarding the service order, the music selection, Scripture readings, slideshow, flowers, food, etc., I see each of their faces and think how humble they all were…

Willing to do w.h.a.t.e.v.e.r. they needed to do in order to make things as easy as possible for me and Doug and to honor our wishes for Caroline’s memorial service.

This was David’s first funeral to perform.

I can’t even express how much I hate that his first funeral was for our infant daughter.

Hate. It.

However…

I have never heard a better sermon in my entire life.

It was sooooo covered by the Holy Spirit.

Every word he said just oozed with God’s love….

For Caroline.

For me and Doug.

For the world.

Rich brought in his band members and we had a full-on worship service.

Loved. It.

He worked so diligently to prepare the music we requested, the programs and to create a slideshow of Caroline’s pictures that we gave him.

Kim was like my very own personal assistant, working out all the logistics of the day.

There are about 498 details that go into planning a funeral service.

I thought of about 5 of them and Kim took care of the other 493.

I don’t know what I would have done without her.

Neil was such a servant leader – getting volunteers for the nursery, parking lot, greeters, etc.

And all four of them were in their work clothes afterwards, setting up and breaking down chairs and tables so that my family could share a meal together after the service.

Have I made my point yet?

These people are AWESOME.

And we were very humbled that they would give up so much of their time and energy for us.

We decided to call Caroline’s memorial service a Celebration of Life Service because we desperately wanted the focus of the service to revolve around celebrating the life that Caroline was given here on Earth, the Eternal life she is enjoying as a child of God and the Eternal Life all followers of Christ will eventually enjoy.

Several members of our family, our community group and close friends read Scripture throughout the service.

Rich and the band led us in a ton of our favorite worship songs.

David preached an amazing sermon.

And Doug and I gave the eulogy.

I read a letter I’d written to Caroline and sang the song “Homeward Bound” while Doug shared such incredible insights that the Lord had revealed to Him through Caroline’s life and death.

So many of our friends and family were never able to meet Caroline, and we felt incredibly blessed to be able to tell everyone about our sweet little girl.

An astounding number of people were able to squeeze into our little church building, and everyone there blessed us with a written note of encouragement.

We were so honored that day.

So very loved.

More importantly, Caroline’s memory was honored…

And Caroline’s Creator delighted in the praises of His people that day.

The Balloon Project #20

Brent, Kim, Samuel, Claire and John love you, Caroline!!!



Celebrating Caroline - Day 19

Memory #19:  Her Burial

Doug and I buried Caroline’s body.

No one else was with us.

It was just her Mama and Daddy.

And it was one of the most sacred acts I have ever experienced.

We’d sought the advice of others whose children had gone before them, and we decided that we wanted to bury Caroline’s body by ourselves so that we could grieve without reserving any emotions like we probably would have had other people been with us.

I would never say that this is how everyone should bury a loved one, but it was exactly the right thing for us to do.

The hospital had given us a burial box so we’d taken it home a couple of days earlier, painted it pink and white and wrote a message to Caroline on it.

Doug carried her casket in his arms from the funeral home to the burial plot and placed it in the grave that had been dug for her.

And I won’t lie.

I wanted to open that box .

I wanted so desperately to see my baby one more time.

But I knew I’d regret it.

I knew what I wanted my last memory of Caroline to be.

And seeing her in that box wasn’t it.

So we proceeded to sprinkle dirt on top of the pink and white painted wood.

We wept bitterly.

We cried out to the Lord in anguish.

We cried out to Caroline with some hope that she could possibly see and hear how much we loved her and missed her so deeply.

And then we sang.

Y’all….

This story could not have a more perfect ending.

Remember how I told you that Doug can’t sing?

Well, no miracle happened that day as we sang our last rendition of “Jesus Lover of My Soul” while we stood over Caroline’s grave.

Not five words had escaped our lips before I was shaking uncontrollably, laughing hysterically at Doug’s off-key singing.

And I couldn’t stop!

So of course Doug sang louder :)

Then I got even more tickled because I could just picture Jesus and Caroline rolling with laughter as they watched the scene that was taking place.

A scene of laughter and tears.

And one of my life’s most treasured memories.

The Balloon Project #19

Pa and Gran Gran love you, Caroline!!!



Celebrating Caroline - Day 18

Memory #18: Saying Goodbye

This is the memory that is probably most difficult to write about.

Re-living the last moments you ever spend with your child is quite emotional so bear with me if this gets lengthy because when I'm emotional, I tend to ramble :)

Doug called me from the hospital to tell me that Caroline wasn’t doing well on the night of September 4^th.

I panicked, but, oddly enough, there was a sense of peace in the midst of the panic.

I called my Mom to come watch Benaiah so that I could go to the hospital.

But before she could even get to our house, Doug called again to say that our neighbor, Marcille, was on her way to keep Benaiah because I needed to get to the hospital immediately.

Marcille’s husband, Jeremy, drove me to the hospital because I was so nervous.

I remember talking to Doug on the phone as Jeremy chauffeured me to UMC.

He told me that it would be a miracle if Caroline lived.

The strangest calm came over me and I said, “I know.”

I really did know.

In the depths of my soul, I knew that this was the end.

I hung up the phone and calmly said, “My baby girl is going to die tonight.”

Poor Jeremy didn’t know what to say.

But I wasn’t really talking to him.

I just needed to say it out loud.

Doug asked the doctors and nurses to keep Caroline alive until I got there.

The 30 minutes it took me to get to the hospital seemed like an eternity to everyone.

I’ll never forget the solemn feeling of the NICU that night.

It seemed so quiet despite the relentless beeping of the life-giving machines all around me.

When I rounded the corner, every nurse in the NICU was standing around Caroline’s bed, many crying.

Doug took my hand and took me to her bedside where the doctor was performing CPR.

Her color had already changed so dramatically from when I'd seen her earlier that day.

I broke down and told Caroline that we’d see her again one day – that we’d all be with Jesus soon - and that I loved over and over again.

The doctor continued CPR so that Doug and I could hold her while she was still alive.

We kissed her and held her tight for just a few minutes until we knew it was time to let her go.

We sang “Jesus Lover of my Soul” to Caroline as her soul went to be with Jesus.

And we continued to cry and kiss and hug her and drink in every part of her that we possibly could.

My mom and Doug’s mom were also there and were able to hold her and rock her until we decided it was time for the doctor and nurses to do all the official stuff to pronounce her dead.

Thankfully, we were then able to spend as much time as we wanted with her in a room adjacent to the NICU.

All the tubes, IVs, wires….

All the stuff that had been attached to her since just moments after her birth…

All the stuff that had sustained her life for 20 days…

They were all detached from her body now. 

We were able to bathe her and put her in the outfit I’d picked out months before to take her home in.

We tried to contact several photographers from Now I Lay Me Down to Sleep but weren’t able to reach anyone, so we ended up asking our dear friend Michelle to come take pictures of Caroline and our family.

Marcille brought Benaiah to the hospital and several of our friends and family members joined us in saying goodbye to our sweet girl.

 

The range of emotions I felt in the hours we spent in that room with Caroline after she died was so wide.

I felt proud.

Proud that she’d fought the good fight, and I was more than happy to show her off to those who came to see us that night.

I felt afraid.

Afraid that I wouldn’t remember every detail about her body once she was out of my sight forever.

I was smitten.

I kept staring at her, thinking I’d never seen a more beautiful little girl in my entire life.

My mind also couldn’t help but think about what she was experiencing in heaven while we held her body here on earth.

She was experiencing Jesus and the fullness of his glory.

She was experiencing perfection.

Caroline had been healed.

The Balloon Project #18

Gary, Michelle and Micah love you, Caroline!!!



Celebrating Caroline - Day 17

Memory #17:  The Begging

Maybe on some level you could call it praying.

But let's be real.

I spent months upon months upon months....

Begging.

Begging the Lord to heal Caroline.

Begging Him to rewind time and form her body "correctly" when she was conceived.

Begging Him to spare our family this road of hardship.

Begging Him to send a tornado to hit our house so that we could all just go to heaven together.

And even after Caroline died, I begged Him to raise her back to life and give her back to me.

We spent many, many hours on our knees throughout my pregnancy and Caroline's short life.

We worshiped.

We cried.

We wailed.

We praised God for her.

We glorified Him because we knew her life was in the hands of an Almighty God.

We thanked Him for letting her grow inside of me and allowing us to love her.

But mostly we begged.

Caroline's death obviously doesn't compare to Christ's death for our Eternal salvation, but I swear there were times that I almost sweat blood as I begged God, as Jesus did in the garden, to "let this cup pass from me".

But He did not.

And I have struggled greatly with that.

Although the answers to "Why?" are very clear in God's Word (I'll spare you the Sunday School lesson), they're very difficult to accept.

They don't satisfy my longing.

And they have tested my faith.

I'll be honest.

Until the day when I my faith becomes sight,

I'm still begging Him to send that tornado :)

The Balloon Project #17

Bruce, Charise and Abigail love you, Caroline!!!

 

Celebrating Caroline - Day 16

Memory #16: Caroline’s Right to Life

I have a love/hate relationship with doctors.

I love that they can be used of God to help heal. 

I love this quality about them so much that, looking back on my life, I wish I’d become one.

On the flip side, there are areas of medicine where our technology is so advanced that some doctors get “too big for their britches” if you get my drift.

I had one such doctor.

He wanted to do every test under the sun to see if we could determine an exact diagnosis for Caroline.

After our very first, very stressful visit to see him, we made a decision:

We weren’t going to make any decisions.

At least not while we were at the doctor’s office being “encouraged” to do test after test after test.

We would go home, pray about the decision(s) that had to be made and call him the next day with the verdict.

And EVERY time we left those doctor’s appointments and went home to pray about it,

The Lord said, “Be still.”

Don’t move a muscle.

Don’t do a thing.

Her life is in my hands.

You see – no matter what the outcome of those tests were, our choice was the same:

Life for Caroline

There was actually a point in the pregnancy when, if we had allowed certain tests to be run and they’d come back positive, we could have chosen to terminate the pregnancy.

Do you see this baby girl?

We could have chosen to kill her.

And the crazy thing to me is that we actually have this choice.

Because I don't believe that ending a person's life is a choice at all.

There are people out there who hold the opinion that choosing life for a child who will probably either die or have lifelong disabilities is the wrong choice.

And I WHOLEHEARTEDLY DISAGREE.

Make no mistake.

It’s a HARD choice.

But NOT the WRONG choice.

Our "choice" lead us down a road of no regrets.

Our "choice" gave us peace.

Our "choice" allowed us to have our daughter with us for 20 days.

Yes, we have a lifetime of grief ahead of us because of our "choice".

But let me make this very clear:

Choosing life for Caroline was worth Every. Single. Second.

The Balloon Project #16

Uncle James, Aunt Alicia, Lucy, James Andrew and Anna love you and miss you, Caroline!!!

Celebrating Caroline - Day 15

Memory #15:  Choosing Her Name

Caroline's name was chosen long before Caroline even existed.

Let's face it - We girls have been thinking about names for our children since we were little girls ourselves :)

So when Doug and I started trying to have kids...

The pen, paper and Baby Names book quickly found it's way into my hands!

After much thought, we decided that if we had a girl, her name would be Caroline Anne.

We just fell in love with the name Caroline; and Anne is a family name from both sides of our family.

Caroline's brain abnormality was detected at our very first ultrasound when we didn't yet know what the gender of the baby was.

Because of all the fluid that had already begun building up around her brain, it actually looked as though her skull hadn't even formed.

We were given a diagnosis of acrania.

And we were told that this condition was not compatible with life.

There, the long road began.

We began praying,

And researching.

And praying.

And researching.
Then my friend Kelli told me of a blog she found that was written my the mother of an acrania survivor.

At last....

We had hope!

Her name was Vitoria de Cristo.

Vitoria de Cristo lived in Brazil and had recently turned 2 years old when we found her mom's blog.

I have to be honest and say that seeing her for the very first time was pretty difficult.

We just weren't accustomed to seeing babies with cranial deformities like that.

But, we were trying to prepare ourselves to have a baby just like Vitoria de Cristo so we began to read her blog.

It was hard.

Hard.

And more hard.

But their baby girl was ALIVE, and her parents gave absolutely ALL the glory to the God.

So we began to ask the Lord to give us this same story.....

This same miracle.

Several weeks later we had another ultrasound that provided us with good bad different results.

Our baby did NOT have acrania.

But it was clear that her brain was developing abnormally.
Things still weren't looking great, but we were sooooo excited about this new development because we thought that perhaps the new diagnosis would be compatible with life.

At this point in our journey, Vitoria de Cristo had become a part of our life.

We checked her blog every day.

And I'm not exaggerating when I say this...

We fell in love with her.

She stole our hearts.

Vitoria de Cristo's life impacted ours so much so that when we found out that we were having a girl, we decided to change her middle name from Anne to Victoria.

We love the name Victoria because we were confident that whether in life or death, Caroline would be Victorious in Christ.

On July 17, just one month before Caroline was born, Vitoria de Cristo went home to be with Jesus.

We grieved...

And we rejoiced that she had been healed and was in the perfect presence of Christ.

She lived a beautiful life and we were so grateful to know her story.
I find a strange comfort in knowing that Vitoria de Cristo was there beside Jesus when He healed Caroline.

I KNOW they are good friends in heaven, just busy being....

Perfect.
Caroline means "Beautiful".

Victoria means "Victory".

Caroline, you are, without a doubt,

A Beautiful Victory.

(If you want to read about Vitoria de Cristo, her blog is www.belovedvitoria.blogspot.com)

The Balloon Project #15

Uncle Chuck, Aunt Carol, Taylor, Ashlyn and Jackson love you, Caroline!!!