A Final Video

On the morning of March 29, we had a painfully long wait for his surgery.

Daniel was thirsty, hungry and so very tired.  We snuggled, played his favorite I-Pad games (like Stack the States and Presidents v. Aliens), we talked and we took some videos.

This was one of the final videos of the morning...

Home.  His new word.  I had desperately hoped the home he would go to was ours, but instead he went to the permanent address for all who believe in Jesus.  Our heavenly Home.

I am so thankful Brent captured a photo of our final snuggles.  As after I walked out of Daniel's room, down the halls of the ICU, I would never again snuggle my precious boy.   I remember as I was walking down the hall having this overwhelming urge to run back and hug him again.  I did not, as in the past days when I was in the room for any procedures he would become much more upset and agitated wanting me to rescue him.  A few times he was so mad he turned blue and passed out.  This did not happen with Brent.  So I left wanting to give him the best chance for a successful surgery.

This has haunted me some.  That I did not go back for one more hug.

But what I have come to realize is that I would always want one more.  Even if I had gone back for that hug, I would still want one more.  And one more.  And one more.  And my reason for not going back was for Daniel.

For the 3 days that followed Daniel's surgery we had a front row seat to the horror of watching him struggle.  Of watching him on the edge of life and death.  These past days I have been reliving the valley of the shadow of death.  The tears have flowed freely.  My heart has been heavy.  And the Lord has reminded me He is near.

Psalm 23
"The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name's sake,

Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the LORD forever."

Home.  Forever Home.  Daniel is no longer thirsty and begging for ice.  He is no longer dependent on medicines or machines for life.  He is home.  And one day I will live there with him.  One day.

One Last Night

One year ago we had what would be our last time together as a family.  This would be my last photo with all five of my kids...

It was Easter Sunday.  Our Easter tradition has become to eat "Family Style" at Maggiano's.  Last year, since Daniel was in the hospital, the kids and I picked up our Maggiano's meal to go with the promise that we would still dine in when Daniel came home.  We found a few tables in the lower level of the hospital and made the best of it...

After we ate, we headed out to the courtyard to play.  My kids soon found a way to play a "baseball" game in the tiny courtyard at the Children's Hospital.  They even argued about a few calls to make us really feel at home...

Daniel and I sat on the side lines and cheered most of the time.  Etched in my memory is the look on his face as he watched his brothers and sisters play.  He was so happy.  The sparkle in his eye, the smile, he was just so content.  It was like he knew it was the last time and he was just taking it all in.  These last moments together have been some of the most treasured because of my memory of the look on his face...

Whenever Daniel did have the energy to bat, the kids paused their game and all attention was on him.  One of Daniel's most favorite things was playing "ball"...

Brent even got one more great "BAAALLLLL"...

That was their thing.

And I love these photos I got with Lizzy.  They hang in her room now with the memory that this was the last time they were together...

 I also got my 5 kiddos together to take a photo...

And one with me...

We buried Daniel in that shirt we gave him.  It says "Greatest Brother Ever".  I have often wondered since Daniel passed away, "Would I have wanted to know this was our last night together?"  And the conclusion I have come to over and over is that I am certain I would not want to know.  I would not have enjoyed the afternoon and evening like I did.  I would not have been fully present.  I would not have been okay with imperfect photos or the big kids arguing in the courtyard.  I would not have wanted to know.  

I am so thankful we had this last night together as a family.  I treasure the memories.  I hold them close to my heart.  I wish I could go back...even if just for a moment.  Reliving them has brought an abundance of tears, but also deep gratitude and joy in the sweetness of the day.   

As I was typing this out tonight, Matt Hammitt's "Trust" came on my music shuffle.  The words speak well for me today, so I thought I would share the song here.  Please pray for us, walking through the last days of Daniel's life again has been harder than I anticipated.  

"Trust" by Matt Hammitt

If we had to have one last night together, I love that it was the day we celebrate our risen Savior, the Lord Jesus Christ.  Our hope.  Our faith in Him gives us assurance that we will one day be together again.  One day.

Love you forever Daniel.  I cannot wait to see you again.

Psalm 34:4

March 11th will mark one year from when Daniel was admitted to the hospital for the first time since 2012. The few weeks that would follow would become some of the most painful and horrific I have ever experienced. We would never again bring him home.

But Daniel. How evident God's grace was in his short life. Amidst Daniel's suffering and the horror of blue spells, pokes, and tests his love for life filled those hospital walls. He had smiles and lollipops to share with everyone.  He brought his headbands and weights to the hospital and impressed the nurses with his upper body strength. He pushed the limits with his "poopy" and "wee-wee" talk, ironically now being one of our favorite memories. He comforted others "Boo-boo's" and showed concern for their equipment and machine beeps in common areas. He had a tent bed filled with his favorite animals, games, and toys. He made sure the diffuser with his favorite oils was going and it made the halls of our wing of the hospital smell extra minty! He bought a new pair of socks and sticker packs every time we visited the gift shop. He watched adoringly as his family played baseball in the courtyard of the Children's hospital. He asked everyone who visited to play "Mem-Rie". He smiled through his pain. He let his light shine.

One of the nights that I came home to sleep, I spent a few hours in prayer on our kitchen floor. I cried. I wept. I begged God for His help. I professed my love for Him. I thanked Him for who He is and for letting me be mom to five precious kids. I asked for Him to give us answers. I asked Him for more time. I asked Him to let us bring our sweet Daniel home again. I poured my heart out to Him. I cried until I had no more tears. As I got up and sat down on our couch Psalm 34:4 was whispered to me heart...

"I sought the LORD and He answered me, and He delivered me from all my fears."

Outloud I said, "OKAY?"

Because it made no sense.  As I was crying and praying and calling out to the LORD I was not feeling scared, fearful or anxious.  Instead I was feeling sad, weary, brokenhearted.

It was not until after Daniel died that this response was made clear to me.

Regularly throughout Daniel's short six years of life, I asked the Lord that he would let me live one day longer than Daniel. I worried about who would care for him like me. Other prayers said regularly were for his line to not break, his pump not to malfunction in the middle of the night without me knowing (as an interruption could result in death), for emergencies to only happen where we could get help quickly, on and on the list went.

All of my fears had to do with Daniel's living. There was no fear in him dying. I knew where he was going. He loved Jesus.

I am currently again reading "Hudson Taylor's Spiritual Secret". I first read most of this book when Daniel was alive. Since his passing, I have not found more kindred words to what my own heart is feeling then in the words penned by Hudson Taylor to his mother after his 8 year old daughter Gracie passed away...

"Our dear little Gracie! How we miss her sweet voice in the morning, one of the finest sounds to greet us when we woke, and through the day and at eventide! As I take the walks I used to take with her tripping figure at my side, the thought comes anew like a throb of agony, "Is it possible that I shall nevermore feel the pressure of that little hand...nevermore see the sparkle of those bright eyes?" And yet she is not lost. I would not have her back again... 

I think I never saw anything so perfect as the remains of that dear child. The long, silken eyelashes under finely arched brows; the nose so delicately chisled; the mouth, small and sweetly expressive; the purity of white features...all deeply impressed on heart and memory. Then her sweet little Chinese jacket, and little hands folded over her bosom, holding a single flower--oh it was passing fair, and so hard to close forever from our sight!  

Pray for us. At times I seem overwhelmed with internal and external trials...But He said, 'I will never leave thee, nor forsake thee,' and 'My strength is made perfect in weakness.' So be it."

The words and description are different for my beloved Daniel, but the heart of love and missing and trust in the Lord is the same.

Later on in the pages of the book they lose a son too. Amidst many words Hudson Taylor wrote, "About 2 of our little ones I have no anxiety.  They rest in Jesus' bosom."

Daniel now too rests in Jesus' bosom.  This is what I mean by I had no fear in Daniel's dying. I am confident of where Daniel now lives. I am sure this is why the Lord spoke the words of this Psalm to my heart in the weeks before Daniel died. My fears for Daniel are gone. I just miss him. Terribly. I feel the "throb of agony" that Hudson Taylor spoke of whenever I think of not seeing that sweet smile, not hearing Daniel's precious laugh, not holding him close, not kissing those precious cheeks, not watching those beautiful brown eyes dance with joy and mischief...

But one day. One day there will be a great reunion! And as Hudson Taylor wrote about his Gracie, I would not have him back. The Lord was so kind and merciful to Daniel for He is far better off now.  The children I have anxiety over are the one's living.

Later in Psalm 34, verse 18 reads "The LORD is near to the broken hearted and saves those who are crushed in spirit."

I trust that these words are true. My feelings go up and down, my emotions roll like the tide, but I trust in the sufficiency of His grace, I trust that He is near. I trust that He will never leave or forsake me.  I also believe these words of Hudson Taylor:

“It does not matter how great the pressure is. What really matters is where the pressure lies -- whether it comes between you and God, or whether it presses you nearer His heart.”

Oh that I would be pressed nearer His heart.