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.  

Never Want to Leave You

Last night, driving home from volleyball practice Lizzy said, "Mom, I have this faint memory of crying and being really sad the first time I met Daniel."

Right away, the photos that will follow came to my mind.  Like all of the big kids, Lizzy was so excited to meet Daniel...

But unlike the rest of my big kids, Lizzy completely broke down when she had to go home again.  So we talked about this last night.  I told her how she "never wanted to leave Daniel" and she could not understand why Daniel and I had to stay behind.  Oh my goodness she was so sad.  I made a picture video that captured Daniel's first few weeks and in that video I put a few of these photos.  Lizzy was 4 at the time, but after watching the video anytime she heard the song I had used for it, she would start to cry.  One time she was even sleeping in the car when the familiar David Crowder tune began to play, and in her sleep she cried out.  

They had such a deep connection.  Lizzy sang to my belly every day of my pregnancy.  And so once she met this little guy, she did not want to leave him...Ever...

On Friday, April 1st 2016, I am sure if there had been a photographer in the room, I would have looked much like this.  The single hardest part of Daniel dying was leaving his body behind at Children's Hospital.  It went against every motherly instinct in my body.  I never wanted to leave you either dear Daniel.  We all love you so.

Dear Daniel

Dearest Daniel,

You have been HOME for 171 days now.  I miss you so much.

The past days the kids have been watching lots of videos of you.  I have loved hearing your voice and your laughter fill our kitchen.  I adore watching Drew, Sam, Lizzy, and Abby gathered around the computer laughing, enjoying, remembering you.  You left us with so much.  A number of times I have said "Oh Daniel!" in synch with saying those same words in the video.  This has made us laugh too.  I said that a lot when you were alive.

As I have watched the videos, besides missing you I have been happy for you.  I have been thinking of how you are no longer tongue tied!  You can speak freely, and I bet you have not stopped talking except maybe to sleep!!   Oh how I would love to hear what you have to say.  Even though your speech was affected by all of those terrible PH crisis's, your life said so much.  Your face told us so much, but I know it must have been frustrating to not say the words.  I see from videos how we missed a lot too.  I am sorry for that.

I missed you at Sammy's baseball games this past weekend.  It was hot, so you would have needed lots and lots and lots of ICE!  :)  I saw a sweet little boy wearing a baseball uniform, probably about your age.  I could not help but wish you could have worn one too.  I love how you loved baseball.

The boys baseball friends loved you too.  In fact, this weekend I ran into one of the mommy's of a dear boy from one of Sammy's past baseball teams.   I had not seen her since the day of your funeral.  She told me that after attending your service, her 13 year old had written a paper about you.  She said he had written that until your Celebration of Life, he did not realize how much you had suffered.  The 5000+ beads of courage you earned are such a tangible picture of what you went through in your short 6 years.  She told me that he went on to write how you were always smiling and joyful inspite of all you had gone through.  She said that your life had an impact on him.  That your joy left an impression.

Oh Daniel, to know you was to love you.  You shined so bright.  You didn't ever feel good a day in your life, but you chose JOY.  Thank you for leaving such a wonderful example for us.  I do not feel very good these days.  It helps me in my missing to know that you are whole, healthy, and talking up a storm.

I found this poem that Drew wrote a few years ago...

Smiling Face

Courageous and fun

Building, Running and laughing

Choosing JOY each day

Daniel

His poem describes you so well.  

We miss your smiling face.  We miss the pitter patter of your bare feet running around our house all day.  We miss your laugh, your voice.  I miss your hugs.  I just miss YOU!  Last night, as Lizzy and I were talking about this we wondered if you were maybe missing us too.  

One day there will be no more missing, Little Buddy.

Love you so much and I could not be more proud of how you shone so bright for JESUS.  Thank you for being an example for me to follow.  Looking forward to the day I will see you again,

Mommy

Home Coming on Fridays

Today was our first day back to co-op.  I had not been there since the week before Daniel died.  Last night I was overwhelmed and slightly anxious about seeing everyone again.  Our life has so dramatically and tragically changed and all of these "re-entry" situations are hard.

But the people at our co-op made this re-entry very loving.  Many big bear hugs and some tears shared with fellow home school moms.  One of the first people to hug and greet me this morning was the sweet woman who is the mastermind behind our yearbook.  She delivered one to my classroom shortly after I arrived telling me someone had purchased one for our family last spring. She added that the last page was in Daniel's honor...

Also early this morning, one of the sweet ladies I have co-taught classes with the past three years brought me sunflowers...

Tears.

Many tears.

Today they were not lonely tears.  They were tears hugged with love.  I felt very loved by this community of people.  I did not feel lonely in my sorrow at all.  Thank you Lord for the dear people who let me know they cared about our missing.

But coming home today was hard.  I cried several times throughout the day thinking about how much I was going to miss seeing Daniel waiting to greet us.  Brent spent the mornings and early afternoon home with Daniel every Friday so that I could teach and the big kids could attend classes at our co-op. Daniel was not quite old enough to benefit from going.

The way Brent has described Friday afternoons to me is that after lunch Daniel would start pacing and checking out the window to see if we were coming.  We usually got home a little after two.  When he would hear our gate open, he would look out his favorite window spot (I know this is from the night, but I do not have a day time photo of his special waiting place)...

and then when he spotted the van he would run to the door that leads to the garage.  Every week when that garage door went up, Daniel would open the door with Brent right behind him.  I can still see him standing in the door frame on his tippy toes trying to see me as I parked the van.  As soon as I would stop, Brent would let him come out.  He always came running over to my door saying "Mama! Mama!" and I would pick him up to hug and kiss and let him sit on my lap still in the drivers seat.

This was our "home coming on Fridays".

It was a wonderful greeting.  One that I never tired of.  One that I now long to have happen again. And to hear Brent talk of his anticipation of seeing us is such a wonderful, heart warming memory.

Since Daniel died, I feel a lot like he did on Fridays.  Waiting, anticipating, so excited for that hug at our sweet reunion.  Maybe when I enter heaven, Daniel will be on his tippy toes trying to see, anticipating,  waiting for our Heavenly Father to say..."Now Daniel!  Go hug your mommy".  And maybe  I will once again hear "Mama! Mama!" as he runs towards me wrapping those sweet arms around my neck.

My final home coming.