Laughing at Lightning

I am up late tonight, snuggled in on our couch with my cozy Daniel blanket.  As I was sitting here, I thought about how much I would love to have him climb up on the couch next to me.  And then the memory of a late/early morning summer night came to mind.   Daniel and I were snuggled up on the couch, as for some reason (maybe the storm) he had awoke and was not ready to go back to sleep.  So we were in the living room, lights out, Disney junior on the TV...it was after midnight...and every time the lightning flashed he belly laughed.  Over and over and over and over.

I miss that laugh.  I miss my boy.  

Our Superman

For Daniel's last Halloween, he chose to be Superman.  In life he was our superman, a super hero.  He faced the adversity handed to him with such grace and an unwavering smile.  His circumstances did not put out his light.  He let it shine.

It is only appropriate that this would be his last costume.  I remember being in Target early last October with Lizzy, Abby and Daniel.  We made our way to the back of the store where the Halloween costumes were.  Daniel walked right up to the Superman costume and put it in the cart.  I had to double check the size, and in doing so I asked him, "Are you sure? Look here's Jake...here's spiderman...here's a hotdog!"  No, no and NO were his responses.  I learned later (watching him shop on his Make-A-Wish trip in Disney World) that he was a boy who knew what he wanted when he saw it and didn't waste time picking it out!  So superman it was...

Speaking of being a boy who knew what he wanted, as he went from house to house, he only took lollipops.  If the bowl had other candy he just said good-bye and headed to the next house.  Daniel did not like candy, but suckers and lollipops were his favorite.

This superman costume now hangs in my closet.  Probably for as long as I live on this earth.  Daniel was our Superman.  My little Superman.  

 On his grave is a Superman plaque.  I sure miss you Little Buddy.

Boggle and a Train Ride

 This past week, our sweet friend Lori shared a photo on my Facebook page of Daniel on the BNSF Make a Wish Train Ride last fall.  She shared a photo of Daniel with her grandson. Lori was one of Daniel's wish granters and her grandson is a cancer survivor.   It was so fun to remember that Saturday afternoon.  All of my kids had so much fun going on a train ride!  As I looked at the photo of Daniel, I saw something in his hand and then I remembered...BOGGLE!  Lizzy had been given a mini boggle game upon entering the train.  Daniel coaxed her into giving it to him.  This mini boggle game became a BIG deal.  Daniel loved that Boggle game.  In fact, if you even said "boggle" he would laugh so hard I was afraid he would pass out.  I cannot tell you how fun it was when I remembered this.  "Boggle!"  I can hear him laughing.  I can see his finger pointing.   I can see his body fold over as he's laughing.  I can see strangers laughing as they watch Daniel laugh.  I can see his smile and the twinkle in his eyes.  I am glad that we have all of these photos to help me always remember...

 This is the photo Lori shared...

This train ride was such a wonderful blessing.  So many great memories and some of my favorite photos were taken on this afternoon.  I can't believe I forgot about "Boggle" until seeing that sweet photo Lori sent.  I am thankful for photos that help me remember.  As a family we had a fun time laughing and remembering "BOGGLE!"  I'm so thankful for another memory that immediately brings the sweet sound of Daniel's laugh alive again in my mind. And he loved trains too.  It was a great Saturday afternoon.

The Time We Were All Together

Today we had some dear friends from our seminary years over.  One family lives nearby, the other lives several states away, all of us remain dear, life long friends.  The last time we were altogether was two years ago and the photo looked like this...

Tonight one was missing.  And another sweet boy, adopted into a loving family was added.

Daniel I missed your presence here BIG today.  Well, actually that is really no different than every day.  But you would have loved all of the kids running around. Your best buddy Taylor met Ruthie Joy.  They hit it off and said they were going to be "pen pals".  Tears wet my face this afternoon as I thought about how your life brought those two together.  Ruthie's parents said that your life is a big part of what inspired them to adopt.  And Joy is her middle name because God gave us you.  It made my heart so happy to see these two become sweet friends...

I know you would be happy, but I couldn't help but wish you were there too.

I love you buddy.  So much.

Anne and I went to your grave.  Ruthie and I went to your tree.  All of us miss you.  I am so thankful to have such dear friends that love you too. 

Reunion

In Daniel's short 6 years we had many wonderful reunions after and during hospital stays, but October 9, 2010 always stands out in my mind as one of the very best.  After Daniel survived the events I shared in the previous posts, we brought the big kids for a visit when he was strong enough.  I wish I had a video of the reunion, but these photos say a lot.  I am so glad I was taking pictures...

Look at that face!  He was so exited to see them!!  It was like he was saying, "Hey guys...oh my word...you would not believe what has happened these past days...it's been crazy...I am so glad you are here...thank you for praying for me, I'm alive!!"  

During the last, dark days of Daniel's life, the thought of another sweet reunion when he woke up was the glimmer of hope on the horizon.  Now we wait for our heavenly reunion, which will be the sweetest, most glorious of them all.  And these precious memories are burned in my mind while we wait.  How I pray you Come quickly Lord Jesus, come quickly.

A Poem

October 7th, 2010

The sun is streaming in

Cars surround me

I cannot breathe

The news playing through my mind,     

My baby is dying

My baby is dying

I am not there.

The cars are not moving.

I cry out to my God

To the One who created all things

I scream, "What am I supposed to do?!?!"

Sing

Sing?!?!

Sing

Sing is the answer to my soul

David Crowder is playing, O Praise Him the song

I begin to sing

From way down deep, I sing

From a place I didn't know existed, I sing

With all my heart, I sing

Hope fills my soul

I imagine the angels welcoming him home

I can see the prison walls falling down

Which will it be?

Jesus Knows.

Mommy singing

Daddy Holding

People praying

Daniel Lives.

To fill in some of the details of this poem that I wrote, this is the original caringbridge I wrote on October 7th, 2010...

By Jaclyn Jackson — Oct 7, 2010 1:27pm

Daniel has made a turn around.  This morning I got the call to come in quickly and was told that our choices were to take him off the ventilator and see how he does (one of the doctors thought this might be a part of Daniel's problem) or put him on ECMO (full life support) because he was in right heart failure, he was unable to keep his oxygen saturations up and he was not responding to the "eppi", dopamine and other drugs that were being given to him.  His saturations with the ventilator, nitric oxide and slew of medicines to stimulate the heart were in the 60's-70's most of the night.  I told DR. W that given those 2 choices I would prefer to take him off the ventilator and see what he does.  After all Daniel had already been through, I just could not put him on ECMO.  When they pulled the tube Daniel's saturations were in the 30's. Brent was with him.  And I was stuck in traffic.  Dr. W was calling me with updates and I was crying saying that I just wanted to GET there!!  I didn't even know what to pray, but when I cried out to God I felt He said, "sing".  So I turned on David Crowder and started to sing.  Loudly. And I imagined Paul and Silas singing in prison and the walls of that prison coming down.  I also imagined the angels welcoming Daniel home.  And I sang even louder.  Our family song, "O Praise Him".  And Daniel began improving. His saturations are now in the high 90's.  He is breathing on his own and holding his own.  He seems to be in pain and is still in a critical situation, but doing SO much better.  

Thank you for praying.  The Lord has decided that today Daniel stays here with us.  And we couldn't be more pleased.  Thank you, thank you, thank you for praying. 

Oh how well I remember being stuck in traffic on the Dallas North Tollway, right at the George Bush.  The cars at a standstill.  Daniel struggling to live.   Blue in color, his daddy beside him stroking his hair, whispering words of encouragement.  That day I wondered if I was joining the angels welcoming Daniel home as I sang loudly, alone in my quiet, not moving van.   But instead I was singing to help the prison walls fall and Daniel survive.  April 1, 2016 would be the morning I joined the angels welcoming Daniel home.  Singing a different David Crowder song while standing on my front step. Once again that stretch of freeway keeping me from my boy.  I think of this day and the latter nearly every time I drive on the tollway, under the bridge at the George Bush.

Today Lord, October 7th, 2016, I thank You for the 5 years and 6 months that followed this dark morning.  I thank you that we got to know the little boy that Daniel was.  I thank you that we got to hear his voice say "Mama" and "Da-da" and "Ball" and "Ba" and "Uke" and "La-La" and "Ab-eeeee".  I thank you that we got to watch him walk.  And swim.  And feel the ocean water.  And hit a baseball.  And cheer for the Ranger's.  I thank you that he knew what a time-out was and that he pulled the hair of his sisters to sit there.  I thank you that he lived for 6 years and almost 3 months.   I thank you for his smile that I see every time I close my eyes.  And for that sweet finger that persistently pointed. And that laugh that no one can forget.  I thank you for his love of jeans...Disney World...Crowder...bananas with ketchup...the way he loved his family...the way he loved me...the way he loved YOU!  Thank you.  Thank you.  The list could go on and on and on and on...thank you that you gave us 5 years 5 months and 26 days past the date of his original central line placement.  I cherish each of them, as I recognize without You not one of them would have been.

First Central Line

The morning of October 6, 2010, Brent, I and Daniel woke up bright and early to head to Children's Hospital for an early morning surgery.  After much thought, many questions and much prayer we had given the okay to Daniel's doctor to have a central line placed so that Daniel could receive a continuous IV of epoprostenol to help control his pulmonary hypertension.  We knew from the beginning this medicine would not be a cure, but would be something that would give him a longer, better quality of life.  Learning about this was intense and reading about the care for this on going treatment was overwhelming.  The phrase "could result in death" was one I never became comfortable with nor took lightly.  In fact, those intense, overwhelming realities would be a part of our life for the next 5 1/2 years.

This was Daniel and I waiting for him to go back for surgery the morning of October 6th...

We had come to this weighty decision because our little Daniel was doing so poorly.  He could not cry without turning blue.  At just 9 months of age we had already called 911 over a dozen times, not all resulted in ambulance rides, but many did.  I would have to go back to his caringbridge and count to know the exact number.  So by this time, Brent and I felt that the benefits Daniel could receive from this medicine outweighed the risks and possible complications associated with it.  Knowing what we know now, we most likely would have advocated for it even sooner.  This same central line that helped sustain his life for 5 years and 6 months would be the very thing that took his life on April 1, 2016.

The day that Daniel had his line placed went okay.  In addition to having his central line placed, he also had surgery to have his MIC-KEY button placed for food supplements.  From 3 months-9months he had an NG tube taped to his face.  He needed this, as the work of drinking milk wore him out.  His Pulmonary Hypertension made even eating a real challenge.  So we were all excited that as a result of this surgery we would be able to see those chubby cheeks without extra stuff stuck to them...even though he was still cute as could be...

The night that followed his surgery was dark and grave.  He almost did not survive, and most, if not all of those caring for him thought he would die.  But I will save those details for tomorrow...  

The gift of 5 years and 6 months that followed is one I have not ever taken for granted, but my heart still cannot help but to have longed for even more time with him.