Saturday, April 30, 2016

The "Yeti"

Shortly after Brent started growing his beard, we took the kids to Disney World.  This was the fall of 2014.  We think that after being at Animal Kingdom and around Mt. Everest is when Daniel started saying "Yeti".  And from this point on, "Yeti" became his name for his daddy.  We think because of his beard!  Whatever the case, this nickname stuck and Daniel affectionately referred to his daddy as the "Yeti".  So I was super excited when I found these PJ's for Daniel's Christmas pajamas...

They say YETI OR NOT.  

I love that he called him this, our whole family did.  The big kids still call him that.  I think "Yeti" will always be.  

Thursday, April 28, 2016

Surrounded By Love

Daniel was surrounded by love his entire life.  He was so loved by his brothers and sisters.

I remember the day I found out we would be having him, our living room erupted in a chorus of shouts and screams! Drew at the age of 8 jumped up and down saying, "I got my wish, I got my wish!"  He wanted me to have 100 babies.  :)

Today, our sweet friend and photographer sent me a few of the photos from Daniel's visitation and Celebration of Life.  This one reminded me of the one taken just hours after Daniel was born...



In life and in death Daniel is surrounded by their love.  He was so blessed.  And they were so blessed to have him as a brother.  We love you Daniel.

Wednesday, April 27, 2016

Glory


When I took this video, Daniel and I were out for a walk at the park by our home.  He spontaneously lifted his hands in the air as I said "Glory", from the verse "The heavens declare the glory of God, and the skies proclaim the work of his hands." Psalm 19:1  Such a great memory, knuckles and all.

Today as I was running (are you beginning to see a pattern with my thinking and running? :))  the song "Glory" by Selah came on my shuffle.  It made me think of this video of Daniel and just brought all of the thoughts that will follow together.

I have been rereading "Through Gates of Splendor", by Elisabeth Elliot.  And yesterday I read these words of Ed McCully (one of the missionaries who would ultimately lose his life attempting to bring the gospel to the Auca Indian Tribe), "I stood by the bed of an eighteen year old indian boy in the eastern jungle.  I watched him vomit blood and in a few minutes I watched him die. In that hour, as I stood looking at his lifeless form lying on bamboo sticks on the dirt floor of the hut, I was to realize even more fully what Paul meant in 1 Thessalonians 4, 'Ye sorrow not , even as others who have no hope.'  I will soon not forget the screaming-chanting wail of those heathen folk who beat their breasts and mourned for 2 days and nights.  It was a picture of no hope."

Shortly after Daniel died, a dear friend told me about a family that lost a child.  This family too had no hope, and the mom went crazy going from psychic to psychic trying to find out what had become of her child. To no avail.  No comfort or answers ever came, just madness.

This made me think of our waitress at the Disney restaurant who told me "I hid it well."  "It" being that my son had just died.  But my tears prove I was hiding nothing.  Instead, I think it is the truth of 1 Thes. 4 that the waitress was witnessing, the "not grieving like the rest of mankind who have no hope."  I grieve, but with the hope of knowing I will see Daniel again one day.  I grieve his absence, with the hope of knowing that he is now whole and healed and happier than ever.  I grieve, because I loved him so, love him so and MISS him so.  But not without hope.

"Bothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind who have no hope.  For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those  who have fallen asleep in him.  According to the Lord's word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep.   For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first.  After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air, and so we will be with the Lord forever.  Therefore, encourage one another with these words."  1Thes 4:13-18

As I listened to "glory" on repeat as I ran today and even now as I write, the truth of the hope that I have in Jesus, that one day...one day...one day we will see His glory, is what brings comfort to my heart.  Paul says to encourage one another with these words.  I can think of nothing more encouraging than the truth spoken of here.   So we wait for that "one day" with much expectancy, all the while saying come quickly Lord Jesus, come quickly!

You can listen here:
Glory

"We know not the day or the hour or the moments in between, but we know the end of the story when we will see Your glory! Every knee falls down before thee, every tongue offers you praise, with every hand raised.  Singing, Glory!  To You and unto You only. We sing glory to Your name." (--quote from the song, "Glory", photo taken during Daniel's Celebration of Life by Ramesh Richard)







Monday, April 25, 2016

"Though You Slay Me"





This song came on my shuffle as I was running today.  A few years ago, my dear friend Laci sent me this song along with the full sermon by John Piper.  When she sent it, she simply wrote "love you".  I am so blessed to have dear friends like her in my life.

On the Wednesday night before Daniel died some dear friends came to the hospital to be with Brent and I.  Nekiah and Shawn Torres and their daughter and our friend Brian Bain prayed with us around Daniel's hospital bed. As Shawn was finishing praying a beautiful, bold prayer to our King, I quoted Job 13:15 "Though He slay me, yet will I trust (hope) in Him."  And then I went on to pray about God's faithfulness and character.  And we altogether said "Amen."  Again we are so blessed to have friends like this in our life.

Earlier that day when Daniel had flatlined several times, I had put my hand and spoke/prayed over him (as the doctors were working on him) in a way that I know the Spirit of God was leading.  I told him, "If Jesus is saying to go home you go, but if He is saying stay, you fight!!  No matter what though Daniel, I am so proud of you.  You have fought so hard for so long and I could not be more proud.  You have made me better.  You have made everyone who knew you better.  I am so proud to be your mommy and so thankful for your life..."  And I continued, naming things I loved and things he loved and things he had to look forward to when he woke up.  I remember the room of nurses and doctors crying and laughing with me...laughing when I mentioned his love for bananas and ketchup!  :)  Even when you were flatlining, you made people smile Daniel!

Bananas and ketchup IS silly!

 John Piper's words in this song are based on these verses:
"Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us and eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not are eternal." 2 Cor. 4:16-18

Momentary, light affliction.  There is nothing about Daniel's loss that feels momentary or light.  It feels heavy and long lasting...and these verses are not minimizing that.  The reason it can be called momentary and light is only in comparison to eternity.  This separation, this very real pain, this huge, heavy loss is but a moment in comparison to eternity.  I am thankful for that truth.  I am thankful for that hope.  It is because of this that I will not lose heart.

Piper says "Not only is all of your affliction momentary, not only is all your affliction light in comparison to eternity and the glory there.  But all of it is totally meaningful...Every millisecond of your misery in the pathway of obedience is producing a peculiar glory you will get because of that...it wasn't meaningless, it's doing something.  Of course you can't see what it is doing. Don't look to what is seen...but to what is unseen...it is working for you an eternal weight of glory.  Therefore do not lose heart.  But take these truths and day by day focus on them.  Preach them to yourself...until your heart sings with confidence that you are new and cared for."  

I hope that you listened to this song, with his words integrated in.  It is powerful truth.

My heart does sing with this confidence.  And I pray that as I continue to place my trust in the Lord, he will show me day by day how to do this life without my beloved Daniel.  For the pain is real, the missing is heavy and the sadness comes in title waves that knock me off my feet.  But the hope is equally as real too.  And it makes me want to sing.

"Though He slay me, I will put my hope in Him."

Saturday, April 23, 2016

Daniel's Wish




I am so glad that we were able to take Daniel on his Make-A-Wish trip.  We knew that he was eligible since he was 2 years old, but we had wanted to wait until Daniel was old enough to make his own wish.  We knew this was a risk, as there was never anyone who could tell us how long Daniel would live but we hoped he would live long enough to be able to make his own.

Just before Christmas in 2014, Brent and I had surprised our kids with a trip to the beach and to Disney World.  The three youngest had never been to an ocean shore of any kind and Disney has always been a family favorite.  We had a WONDERFUL time.  Daniel loved the ocean.  Everyone did.  And Disney was as fun as it always is!!  I love that place.

Upon returning from that trip, Daniel learned how to say "world".  And he began to ask every. single. day. to go back to "World".  He would go through a whole dialog.  He would say "World", kiss the air (meaning he wanted to kiss Minnie Mouse), he would then put out knuckles (for giving knuckles to Goofy) and then he would say "boots" for seeing Jake's boots again.  When we visited Dr. Ivy in August, he did this for he and Beth too.  And so it was at this visit that we decided maybe it was time.  Daniel was definitely expressing a "wish" to go back to Disney World, very persistently!!  :)

In late August we heard from Make-A-Wish that Daniel would get to have his wish granted!  And shortly after meeting our wonderful granters, a plan was in the works for Daniel and family to return to Disney World.  And oh my goodness did he have so much fun!  The best part was receiving a Genie Pass.  For him the blessing in this was being able to meet all the characters he wanted to.  That was Daniel's favorite part of Disney...hugging the characters.  One of my all time favorite memories of him was when he met Tinker Bell and hugged the photographer before hugging her and then preceded to hug the strangers waiting in line.  He had so much love to give!

Today our family saw some of Daniel's favorite characters.  Not at Disney World, but at a Disney character resort.  It was our first official family photo taken without Daniel.  The tears have come in full force and the weight of the grief and missing is as great as it has been.  But as I walked this afternoon, I sang "It is well with my soul" and thought about the story behind what led to the writing of this hymn (read the story here). God has again been faithful to comfort my heart, as even though I grieve it is not without hope.  God has been faithful to have my heart "overflow with hope" as Romans 15:13  says.

But oh friends.  Today was hard.

As Sam gave Goofy knuckles in honor of Daniel and Lizzy gave Minnie Mouse a kiss, it was too much for my heart to take.  And I cried.  I felt the need to tell our waitress why I was crying, because I could tell she was worried...and then she cried too.  And hugged every one of us.

It is nice that others care.  Even a stranger who only waited on us for a little over an hour.    She told me that "I hid it well".  Which I guess must mean that I don't outwardly look how people would think, knowing how recent his death is.  I know this is grace too.

I am sure that one day I will look back and see God's faithfulness to us now, the same as I can so clearly in Daniel's 6 years of life.  How am I sure?  Because, of one thing I am confident...God is faithful.  He is faithful.  He will not leave me now.




Friday, April 22, 2016

"Ball" on Christmas Day

Christmas in Texas was beautiful this past year.  While waiting for our Christmas dinner to cook, Daniel and I played lots of ball...high heels and all!








I get just a "little" excited when Daniel hits the ball...



After a great hit we had to Say, "weights, zumba, big bob, heeyyyyyyy" That's what is happening in the photos that follow...





So thankful that Sam was our photographer that day.  I love having these photos.

Thursday, April 21, 2016

All of ME





I shared this video the day before Daniel's 2nd birthday.  In leading up to the days before his birthday that year, I had been overwhelmed by God's grace in our lives.  And when I first heard this song, I thought it must have been written for me! As when Daniel was diagnosed with Pulmonary Hypertension in April of 2010, the first days in the hospital I could not look at him without crying.  I remember one night sitting next to Daniel's hospital bed and asking God to somehow help me "do this".  To help me love Daniel without holding back despite a terrible prognosis.  I remember telling the Lord something like this, "Daniel deserves to know ME.  Not me like this.  Not me defined by a disease.  Not me who cannot look at him without crying.  Daniel deserves to hear me laugh.  My other kids still need me.  This me that cannot stop crying just won't work.  Please help me Lord!"  And although there were many tears throughout the years, there was MORE laughter.  God was faithful to answer my prayer that day.  God was faithful to help us live, even with a terrible disease that threatened the life of my baby boy every. single. day.  God was faithful to help me give all of myself to all of my children.  To my sweet Daniel.



So I made this video and shared it the night before he turned two. The past few days it has come on while I have been running...



Now my prayer is similar...that in his loss, that in my missing, that in the giant hole left in my heart, that I would still somehow give all of myself to my children that are living.  Jesus, I need your help. You have proven yourself faithful over and over.  And I am trusting you with our tomorrows, until one day we will all be together again.



Thank you Lord, for answering the cry of a mommy.  Thank you Lord that Daniel got to know me.  Thank you for the gift of loving him...of loving him without holding back.  Help me to continue to love like this.

Wednesday, April 20, 2016

First Hair Cut Video



Oh how this this hair cut is a memory forever etched in my mind! This crying to laughing went on the entire 20+ minutes his first hair cut lasted.  I wish I had not made the youtube video so short, maybe I will try and upload a longer version later.  But regardless, you can see how his responses were like a light switch from crying to laughing!



I have had many people tell me how they remember this video.  His laugh was contagious from day one.

This smile

Oh how I loved Daniel's smile.  I especially loved the dimple up on his cheek when he did this big smile.  One of a kind.  I miss this so much.

Tuesday, April 19, 2016

This Little Light





This song came on as I went out for a run today and it reminded me of this video I made three years ago.  This Little Light of Mine was a favorite song of Daniel's.  I can see his little pointer finger up as he would listen to the words.  On Daniel's coffin we had the words, "This Little light of mine, I let it shine!" painted on the top.


Your life shined so bright sweet Daniel!  I love you.

Sunday, April 17, 2016

Home

Home was a new word for Daniel during this final hospital stay.  Every doctor, every nurse, every visitor, every few moments, Daniel would ask to go home.  As he was apparently becoming sicker and sicker, I started to wonder if the "home" he would be going to was not our earthly home.  Here is what I wrote just after midnight on Daniel's caring bridge site, the night before his surgery...

"So I stare at this white page and don't know what to write.

So I am writing to ask you to pray for a miracle.  

Daniel wants to go "home".  I pray the home we get to bring him back to is ours.  I am thankful to know that no matter what he will get his desire.  I just can't imagine the giant hole there will be in our home if he doesn't pull thru.  Jesus, we ask that you would let us keep our son.  We all love him so much.

Thank you for praying. Just knowing that you are asking God to spare his life brings my heart peace.  I trust Him. "

I no longer have to imagine the giant hole.  It is here in front of me every day.  We all miss him.

This is the last video I took if Daniel the morning of his surgery...


I wanted to bring him home to our house.   Instead, God took Daniel to his heavenly home.  While our personal addresses are you unique, like Ramesh said at Daniel's Celebration of Life, our permanent heavenly address can be the same.  Daniel loved Jesus.  I know that he is with him now.


All of the days that Daniel was so critical, we had his iPad propped against his hospital bed playing Crowder's "Neon Steeple" album on repeat.  Some nurses told us they went and downloaded it after their shifts.  Crowder was Daniel's favorite.



On the morning that Daniel died, I was not there.  One of the nurse practitioners had called me at 7:32 am to tell me they were doing chest compressions.  What she failed to mention was that this had been going on for a long while.  In what seemed like slow motion, I sat up in my bed and thought "I can't just jump in my van in PJ's".  And I also knew at that time of day the drive would take well over and hours time.  It would be too long to get there if Daniel would not pull out of this.  Dr. M had talked to us about the risks prolonged chest compressions.

So I walked into my bathroom, washed my face. I went to my laptop and shared Daniel's "We Believe" Video (that I had stayed up until 2am the night before finishing...because the Lord has prompted my heart to do so.)  I went back to my bathroom and combed my hair and pulled it up.  I put on my clothes.

As I stood looking at myself in the mirror, the "Steeple Outro" from the Crowder CD began playing in my ear...not on any device.  Just playing in my head.  These are the words...

"My heart was weary, 
my soul was heavy, 
my bones were aching Lord. 
I needed waking, 
I needed breaking, 
I needed you my Lord.  
Then you took my hand 
and lead me to the river 
and buried all I was.  
Then you kissed my face 
and told me I was yours, 
and I knew I 'd found my 
HOME."

As soon as I heard "home", I knew Daniel had died.  The hospital never called.  Brent never called.  I knew.  I then grabbed my phone off of my night stand and went out on my front porch.  I put "All This Glory" on as that is the Crowder song that follows...and it is about all the glory of heaven and Jesus being victor...and I put my hands in the air and sang my heart out to heaven, knowing I was joining the angels in welcoming Daniel to his heavenly home.

Later that morning, I found out his time of death was 7:45 am.  I am convinced that when the Lord played those words in my mind, it correlated directly with Daniel leaving this earth.  And while my heart is broken and the hole that I spoke of earlier is large and I wonder how I will ever be the same, I am so thankful that Jesus told me he kissed my boy, and told him He was his and that Daniel knew he was "home".

Oh Jesus, now help this mama.  While I am so happy for Daniel, the missing of his presence here is most unbearable. Thank you for the sweet gift of grace in telling me Daniel was "home".   And thank you for the hope I have in knowing that our heavenly addresses are the same, so we will again be together one day.

Saturday, April 16, 2016

Amazing Quilt

In January, two sweet friends gave Daniel the most amazing quilt.  They had it made with his most favorite things; baseball, jeans, Jake and the Neverland Pirates, Pooh and the color blue.  He loved it so very much.


I now sleep with it every night.  Thank you dear friends for this most precious gift.  I will treasure it always.

Friday, April 15, 2016

A Birthday

Today is Drew's 15th birthday.

Our first family celebration without one of our family members.  I asked Drew this morning, "What is it like for you?" "Weird." Was his response.

It is weird.

Brent and I blew up balloons, wrote on cards and left Drew's presents by his door as is our family tradition.  We all sang happy birthday and watched him open as soon as we were all awake.  We then spent the morning snorkeling in a beautiful bay.  And picked up pizza for lunch per Drew's request.  Tonight we will grill and have cake and sing some more.

But he is right, it is weird.

Necessary and right to continue to celebrate the life in front of us, but so weird to be minus one.

I can't tell you how many times since Daniel's death that I have had a moment where I feel like I'm forgetting something.

I wonder if it will always be weird.

Since we spent the morning in a beautiful bay, I thought these photos of Daniel and Drew from last summer at Myrtle Beach would be a good memory for today.

Look at how he looked at you "ooooo-ck"(This was how Daniel said Drew's name the past few months...long "o" sound) .





He loved you so much.

Thanks for being a great big brother to him.

Happy golden birthday dear Drew.  And even though it is "weird", we are so thankful to be able to celebrate your life today.  Love you so much.

Thursday, April 14, 2016

A Best Friend

In the last few months of his life, Daniel had a best friend.

During his life, Daniel had many friends.  Family friends.  People who loved him.  But up until December he did not have a best friend.  Sweet Taylor came into Daniel's life just before Christmas.  A dear friend introduced me to her mommy and shortly thereafter I invited her and her 3 girls over to play.  Daniel and her 4 year old daughter Taylor hit it off right away.

They are both busy, lively, full of personality and somehow they just "got" each other.  She was patient with Daniel and Daniel adored her.  In fact, Daniel talked about her every. single. day.  He called her "Shleshler" and everyday he would remind us that her favorite color was blue (like him), that she was pretty and beautiful!  Everyday.  Sometimes multiple times a day.

They both loved trains, the color blue, dancing, and being silly.

They sent videos back and forth to each other.  They are priceless.  Priceless.  In each one she sent, she declared her love for Daniel.

I cannot tell you how thankful I am for this sweet gift of friendship.  I had prayed that Daniel would have a friend.  A true friend.  Who loved him.  She did.  And it was mutual.  It did not seem to bother Taylor that Daniel could not talk very well, they just played and enjoyed each others company.  I am sure this is a reflection of her wonderful mommy too.

Her mommy sent me a text earlier and said that Taylor learned about Daniel and the Lions Den at school today.  Her teacher said that Taylor raised her hand and said "My best friends name is Daniel too." Oh sweet girl.

Jesus thank you for the gift of friendship.  And thank you for the sweet little girl you sent into Daniel's life.  He loved her so.  And she was a great friend to him.

She gave him the superman shirt.  The "croc-ie" stuffed animal she gave him was place in his coffin with him.  And the night of Daniel's visitation, when it was over there was a blue Thomas the Train in  his coffin too.  I knew it was from her.

Thank you sweet Taylor for being such a good friend to Daniel.









Fingerprints

As I opened up my computer to write this morning, I was once again greeted with a screen that is in desperate need of being cleaned.  I have not been able to bring myself to clean it though.  In the hospital Daniel watched picture videos I had made for him over and over.  The favorite being his "Lava" video.  A few weeks before he became so sick, he had asked me to make him a "Lava" movie.  Lava is the title of the song.  It's about two volcanoes falling in love.  Lol.  He has always loved "Somewhere Over the Rainbow" Ukulele version, so I think the Ukulele was what he loved, but I'm not sure!

As he watched the videos he always touched the screen when certain photos came on, so my laptop screen is covered with his little fingerprints.  And I mean covered.  For now, it will stay that way.  This is the video that made the fingerprints...

https://youtu.be/tHduJdnzSxA

Just this simple video holds so many memories for me.  One of the days that he was feeling terrible, he had it on repeat and laid beside the computer watching this for almost 2 hours.  Each time it finished he would say "more".  And "dead"...he was always worried the computer would die.

I am thankful that something so simple brought him so much joy.  And now I can watch this on repeat.  Forever.  I am so thankful for all of these precious memories. And for the fingerprints Daniel left on everything.  My heart included.



Wednesday, April 13, 2016

Easter

Easter Sunday was such a wonderful family day.  Amazingly wonderful for having one of us in the hospital.  The kids and I stopped at Toys R Us on the way to the hospital that day and bought some extra special gifts for Daniel's Easter basket.  We picked out a giant blue bear, a new car mat, a Thomas the train set, and some duplo Mickey Mouse Legos.  This was paired with a Nike blue shirt and a World's Greatest Brother outfit that I had already purchased.

The World's Greatest Brother outfit ended up being what we buried him in.

For the past 7 years, we have eaten family style at Maggiano's Italian Restaurant on Easter Sunday.  This year we picked up take out and brought it to Children's Hospital, with promises for going to the real restaurant when Daniel came home.


After our dinner we headed to the tiny courtyard at Children's.  Within a few minutes my baseball loving family had figured out a way to play "ball" (as Daniel called it) in that small courtyard.  They used a blue and white tiny football from Daniel's Easter basket (that the hospital gave him) and their arm as a bat.  They made up rules about how people were safe and out depending on when the football was back to the pitcher.




They argued about calls (which made it feel like we were in the backyard) and Daniel and I sat on a bench and watched.  He was so happy watching them. And it was a great opportunity to capture that newly missing front tooth.


I loved when he clasped his hands like this sitting cross-legged.  So glad I snapped this photo.

He was a lover of selfies too, so we took a few as we watched together...





 And every few minutes, we would take out the real bat and ball so Daniel could hit.  He was too sick to run much, but he loved hitting the ball.





This was one of his favorite things to do in excitement with his daddy...


...they are both exclaiming "BALL!" after a great hit.

These are the last photos I have of my five kids together.  I will treasure them always.






 He was the World's Greatest Brother.  And he has the best brothers and sisters in the world.

Lizzy has sleep with the giant blue bear every night since he died.  It was not until after he died that we noticed the bear has beautiful brown eyes.  Just like Lizzy and Daniel.