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.
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,
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 maybeI will once again hear "Mama! Mama!" as he runs towards me wrapping those sweet arms around my neck.
Yesterday was our first day of school. I have been homeschooling my kids since Drew started kindergarten. And we always start after Labor Day. :) This is the photo of Daniel's Last First Day last fall...
He was Pre-K FIVE! One of the traditions we have is that the kids all get a little gift (usually clothes) and a card from me on the morning of the first day. Last September, Daniel was SO excited to receive a "Nike" T-shirt just like the Big Boys. He was proud.
And this photo is framed. It is one of my favorites of Daniel with the girls. Their personalities and their love for each other shine through.
Yesterday was hard. Just missing my boy so very much, and longing to see that smile again. Wishing I had a card and gift to get ready for him too. But just like the Lord, in His faithfulness, He has provided a most wonderful gift to me. Taylor's family asked if I would homeschool her this year. We had talked about it briefly before Daniel became so very sick and this summer we talked about it again. I am so thankful to be using all of our kindergarten materials one more time, instead of having to pack them up to pass on. My kids are also so excited to have Taylor with us. And I know that Daniel would love knowing that his best friend is doing "Cooool" at our home. So this year I still had 5 cards to make...
Today during our craft time, she asked me if Daniel could make an octopus with us too. I wish he could sweet girl. I wish he could. So instead as we crafted we talked about heaven and what Daniel might be doing. I have another story from today too, but I will save that for another blogpost. In a way that makes me in awe of the Lord, this Taylor story goes along with one of my most favorite memories of Daniel.
God continues to make his presence undeniable and He encourages my heart in ways I could never have fathomed.
I love you Daniel. "Cooool" just isn't the same without you, but thank you for leaving our hearts filled with so many wonderful memories.
And thank you Lord for providing Daniel with a best friend. A friend that we all love and reminds us so much of Daniel. The more we get to know her, the more we see why Daniel loved her so much.
Brent and I have had a especially hard time the last few days. When he came home from work today, I told him how the floodgate of tears opened up late last night and didn't stop until 3am. He then told me he had a morning like that while we were in Colorado. And he said, "When it happens you just can't stop it."
I then said, "I just still can't believe he's gone."
Brent said, "I know. And people tell me I know what you mean...but I don't think they do. He's already been gone for 5 months."
I said through tears, "I can't believe he's been gone 5 months."
Sam was listening to this conversation and after I made the last statement...without missing a beat...he said, "You mean we're 5 months closer to seeing him again."
Yes. Yes we are. Thank you Sam. I needed that reminder. <3
I sure will miss taking these race day family photos...
This year it was just the girls and I. From Daniel being so sick and in the hospital for so long, Brent used up all of his vacation days and so he was unable to join us. Originally I was going to travel to Colorado alone, but about 10 days before I would be leaving Lizzy came to me and said, "Mom, I really want to go and run for Daniel. Can I please come along with you?" And I had replied, "I am sorry honey but we just cannot afford it this year." She said, "Please just check. Maybe you can. Show me!" She's persistent! And I am glad that she was, because as it turned out Southwest had tickets for $70 roundtrip and we had points...so I ended up paying just $5.60 for each of the girls!! That I could afford! ;-) And it was really wonderful to have them there with me. One of my best friends was in Colorado at the time and so we were able to stay with her and her family. I was so thankful to have her there too.
The day before the race we spent the morning watching all of our old race videos. We cried. And cried. Lizzy had said through tears, "I am really going to miss crossing the finish line as a family. I wish Daniel would still be here. This is going to be hard to do without him." And it was hard, but I think spending this time looking back and sharing and crying actually helped us on race day. The most emotional moment of the day was writing on our "In Memory of"...
DANIEL.
Another emotional moment for me was when I saw the event posters for this year. They had this sweet photo of Daniel and Dr. Ivy from our first ever PH race we attended...
Drew was in the top photo too!
The morning of the race my outfit was inspired by Daniel. For the last year of his life, "weights" was one of the first words he said each day. He sometimes even said it in his sleep. On this particular day he came to get me for "weights" with my shoes and headband on and a water for each of us. Lol. I love you Daniel. And I miss being asked to do "weights" all. day. long!
Lizzy and I ran the race. Abby walked with my mom, my aunt Kathy, Beth, Rhonda and some of my cousins. Thank you to all of you who came out! I cannot believe we didn't get a photo. Next year!! Lizzy actually won the race for her the 12 & under age division! Way to go Lizzy! You really did want to run for Daniel!! I know he would be so proud and happy!
And we just love these wonderful people who helped take such great care of Daniel. Thank you Dr. Ivy, Beth and Michelle!! We are forever grateful.
I miss you Daniel. I would give anything to kiss you like this again and hear that amazing laugh. We are so proud of you. You finished your race. You crossed the finish line. And you ran so well. Now the rest of us have to finish ours. And I think our reunion one day will be just glorious. I love you Little Buddy.
Our Team Daniel shirts remind us to run our race. Not only for you, but for Jesus.
"RUN with perseverance, the RACE, keeping your eyes on JESUS."
TEAM DANIEL
"Therefore since we have so great a cloud of witnesses surrounding us, let us lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart." Hebrews 12:1-3
Forgive me if this has been shared before, but tonight "We Believe" came on as I was running and the need to write out the events of Daniel's final day and hours was on my heart again. Details I do not want to forget.
March 31 was a hard day.
It seemed like a better day than the previous two, as it was the first day Daniel had not arrested since having his surgery. We all saw this as a good sign.
However, he was still on super high doses of meds that were keeping his blood pressure stable and his lungs were congested. On April 1st they planned to extubate Daniel (take him off the ventilator) so much of March 31 was spent suctioning and attempting to strengthen his lungs and wean some meds to make this possible.
It was hard to watch.
In fact, mostly I didn't. I walked. A lot. Hours. Hours were spent pacing and walking the halls of the hospital. Some of you reading this joined me for a lap or 40. Thank you. I walked so much that the hospital staff would tease me.
I had a hard time just sitting there.
When I would sit on that Thursday, I would work on a picture video. I had started it earlier that day, as I felt that the Lord wanted me to make it. And so sitting there I would chip away at adding and editing photos. Praying and hoping and waiting for the next day.
As the day went on, it was more of the same. Every hour and a half or so the team would come in and suction and work on Daniel...and I would walk for the 20-40 minutes it would take. Finally at about 10, I was encouraged by the staff to go home. To try and sleep, because once Daniel was awake they were going to need me.
So I obeyed. I kissed my boy, for what would be the last time alive and drove home.
My teenagers were up when I got home. I told them about how Daniel and I had secretly planned a trip to Disney World. We pulled up the details on-line and talked about how much fun it would be to go back. It was a wonderful temporary diversion. I prayed with them and they headed to bed.
As I got up to head to bed myself, the Lord whispered to my heart (I did not hear a voice or anything like that) "You need to finish that video."
In my heart I said "Really? Now? When I am so tired and supposed to get some sleep?"
"Yes, now." was the answer to my heart.
So I stayed up until around 2 finishing the video. I fell asleep on the couch with the computer on my lap. When I woke up about 5:30 am, I clicked the button to "Publish" my finished video and then called the ICU to check on Daniel. The sweet nurse said that he had a stable night. She said that he had tolerated the suctioning well and the vent had been turned down some. She said everything was looking good and we were moving toward our goal. She encouraged me to sleep more, saying that we would not extubate until after lunch. Brent was sleeping in the waiting room.
So I moved to my bed.
At 7:32am my phone rang to tell me Daniel was arresting and they were doing chest compressions.
My computer was in my bed with me. So I shared the video I had just finished to facebook. They called again to tell me they were still doing chest compressions.
Everything from this point on felt like slow motion...as I then got up, washed my face, pulled my hair back...all the while thinking it's at the very least 1 hour to the hospital with morning traffic...more likely two...and so I stared at myself in the mirror wondering what to do.
At that moment, the words to Crowder's "Steeple Outro" played in my mind:
"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 Led 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"
And I knew Daniel had died. His official time of death was 7:45 am and although I am not sure what exact time it was, I know deep down in my soul that when the word home was whispered to my heart, Daniel had entered heaven. And I went out on my front porch and lifted my hands to heaven singing "All This Glory" knowing I was joining the angels in welcoming him home.
This happened just minutes after sharing his video where I had pleaded "We want you to come HOME, Daniel!"
And for reasons that I am sure I will not fully understand until I myself am in the presence of the Lord, God said "No." to our desire to bring Daniel back to our earthly home, and instead said "Yes" to taking Daniel to his forever HOME. A home that we will live in with him. A home that each day we are one day closer to having for our permanent address. A home that is far better than any I could give him.
We Believe.
He's coming back again.
It is for this that we wait with eager anticipation.
"Death is swallowed up in victory. Where, O death, is your victory? Where, O death, is your sting? The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us victory through our Lord Jesus Christ."
We believe.
"In this time of desperation,
When all we know is doubt and fear,
There is only One foundation,
We believe.
In this broken generation,
When is all is dark, you help us see,
There is only One salvation,
We believe.
So let our faith be more than anthems,
Greater than songs we sing,
In our weakness and temptations,
We believe.
Let the lost be found and the dead be raised,
In here and now let love invade,
Let the church live loud our God will save,
We believe.
And the gates of hell will not prevail,
For the power of God has torn the veil
Now we know your love will never fail.
We believe.
We believe in God the Father,
We believe in Jesus Christ,
We believe in the Holy Spirit,
And He's given us new life.
We believe in the Crucifixion,
We believe that He concurred death,
We believe in the resurrection and He's coming back again."
