In Memory...

In memory of Shaun, last Saturday, the two week mark, I designed and went and got a new tattoo; one that will be with me forever, knowing SuperShaun is always with me. I feel like it was ok for me to do this, and I will have to answer for my decision one day but I really like it...! Some of it hurt so badly, but during the pain all I could think about was if Shaun could go through what he did, getting a trach, being in a broken body, poked repeatedly for blood draws, and do it with such grace, I could withstand this. He is a part of me forever and I will always be able to look at this and remind myself of many lessons he taught me.  It is part of my healing process.

 In Shaun's honor, I held a weighted blanket making party. There were quite a few women who showed up and we made 8 blankets to give to the PICU at University of Virginia where Shaun spent so much time. Connie, one of the ladies who made Shaun's blanket, taught me how to make them and also participated in the day. I hope to make many more of these this summer so the children may have something good come out of their hard experience. Some of the kids there don't have anyone that can stay with them. The weight will be good for them so they don't feel so alone.  This is just one of my projects for giving back. Thank you for all you do too.

I have also started running again. It has been a long time~ since I found out I was pregnant with Shaun, that I have ran. Each grueling step I take as I am getting back into shape, I can feel Shaun right there with me, pushing me and telling me that I can keep going. In Shaun's honor, I will be doing a mud race in Lovettsville, VA on June 29... a way of showing him that I am going to be healthy and can complete things that I put my mind to. The second race that I will do, in October, is to support Blue Ridge Hospice, the program our family is currently in. Proceeds go to Camp Hope, a camp for kids who have lost loved ones over the past year, help them with grief, help them know they are not alone, have a memorial service, balloon release, and a good time knowing they are not so different from everyone else. This is dear to my heart as these people in a short time have become like family to me. It is a 5k and I would love to have half the field out there with SuperShuan shirts on. If you can't race, then maybe you can sponsor someone who can. More on this race later... but keep looking for updates about the mud race in Shaun's honor.

Thankful....

We have been blessed these past couple of weeks by many, many people. Some come over and mow the yard. Some weed, others bring meals, do laundry, sit and listen, bring the big boys gift baskets, and some pray. We were even allowed to use the funeral home for free... I am thankful for all of it.  So very blessed to have such a great community, friends, and church family. I just want everyone to know that each gift, whatever it is, we are grateful for.  We have learned a lot these past few weeks, how to be humble being the main thing. I understand now of when Jesus taught from the parable:
Matthew 25:31-40

31 “When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. 32 All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. 33 He will put the sheep on his right and the goats on his left.

34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Each and every act of kindness, gift of life to another and prayer is cherished. Thank you for giving of yourself to our family and others in Shaun's honor.

Ode to My Grandson, Love Grandaddy

An Ode to My Grandson, Shaun Peter Steyaert

I sing of a child, who is Irish I think,

Shaun Peter Steyaert I say with a wink.

A handsome young lad with sandy blonde hair,

And a smile on his face for the love he will share.

I’ll tell of a vision before life began,

In September of ’10 the spirits of children the Savior to send:

“I have an assignment for one at my knee”, and up go the hands,

One, two, now three.

Then the Lord added this: it will be accomplished with difficulty.

There one child spirit, precious and fair,

He stood up and said as if without care,

“I love you, Lord Jesus, I beg you, send me”,

Jesus looked and he smiled at our little Shauney.

“You see, Shaun, this task for you is to show

My love through a mom, a dad and two brothers,

That all the world may know

That God in Heaven loves them so.”

He came on an anniversary, the 10th day of June

A great uncle’s passing had been much too soon.

Though happy that day it had been before,

Great grandparents married, and now all the more.

Your birth was met with such great joy

An eighth grandchild, a baby boy!

A pal for grandpas, and dad, and brothers,

A blessing for grandmas,  mama and others.

As you grew we held you with such great pride,

But began to see that something is amiss inside.

Eye contact is fleeting, and problems with growth,

Sinking feelings began as we changed our approach.

Then came doctor’s visits to see what was wrong;

We find cataracts but he still hears our song,

Swallowing problems and needs for nutrition,

We searched for answers to cure his condition.

All the long Shauney knew only growing,

He learned to roll over, his development showing.

Excited he was when visitors came,

He’d wave and he’s wiggle, give a kiss without shame.

Shaun never gave up as his condition grew worse,

Was constantly blessed to be part of his church.

The joy he spread when he saw our faces,

A reflection of joy in heavenly places.

Not a cry or a groan did I hear from his lips

But once when my glasses removed,

I scolded him “Shauney, leave them alone!”

Provoking a baby’s boo hoo.

A valiant mother, though now heart broken,

A demonstration of total devotion,

A child not complaining but bearing the pain

As modern medicine searched for knowledge to gain.

A winter of illness, of fever and distress

Hospitalized he fought his way through it, though we were a mess

Then the movements began, by his body betrayed

But the heart of a champion would not be dismayed.

The battle waged on

And as answers were found,

No cures would be offered;

He was now heaven bound.

The fateful day came,

As the disease had its way,

A frantic flight to the mecca,

“Make the seizures go away!”

But all the king’s horses,

And all the king’s men,

Could not turn the clock back

And make him whole again.

That would rest with his Creator

And with assignment complete,

It was time to fly heavenward

To be cradled so sweet.

The family was gathered,

Friends came to assist;

Two devoted brothers, loving parents

This child would be missed.

As heaven patiently awaited

Praises of faith rose from our hearts,

And a small child slipped away

From mom and dad into Christ’s arms.

So now we gather,

To celebrate his release;

To remember his gifts to us

And comfort our grief.

“Shaun’s life was in vain!”

some may say

Though in God’s kingdom

This truth remains:

He had a purpose

that fit divine plans,

And he fulfilled all required of him

as no one else can.

And what might he say

To those for whom he cares,

H would echo his Savior,

“Come be with me here!”

“You can, you know,

If you trust in the One who sent me!

You may think He was cruel, but no;

He sent me to testify to Love,

And I was glad to be His tool.”

I love you and will miss you, my little buddy! I look forward to our reunion!

Your Grandaddy

One of the hardest days....

They came and picked up his stuff... I had to go into his room. His room that I haven't really been in since the morning that he started the shaking. It brought back all those memories. The biggest one being eyes glassing over, holding him, crying on him, then telling him it was ok to go home. I don't know why both times this happened that was what came out of my mouth. It wasn't its ok to die. or Its ok, go to heaven, or Go to Jesus. It was go home. Maybe because there is comfort in home. Maybe because this world is not our home. For whatever the reason, the Holy Spirit always leads. And in this moment when I couldn't do anything to help or comfort my Superhero, I told him through the leading of Christ, to go home. There is a song that says that this is not our home. This one has been one of my favorites the last week. Until I see you again, my Superhero...

2 Corinthians 12:9

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

One Week.

John 14:27 "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

Today was one week. One week since I was able to hold my boy. One week since I could look at his sweet face. One week since I could sing to him, rock him, love on him, kiss his sweet cheeks. One week for my arms to feel empty. Today was hard. This past week has been filled with preparations for the Shaun Celebration, busyness of family and friends over all the time, keeping my mind occupied on other things. Today it wasn't as much. I had more time to stop and think. I miss my routines I was in. I miss all the people we see on weekly basis.  I can't seem to bring myself to go to Stephen's baseball games, school functions, or even the grocery store as I know there will be people there who will ask how we are doing. Fine I would say, but I am not fine. I hate going out. Especially to places I would bring Shaun. That's everywhere. I miss my little boy. His sweetness. His love. His face. With tears rolling, I miss him. I haven't cried much this past week, but today I did. It was real today. The nights stink too. When I am not past exhaustion when I try to go to sleep, I relive the last hours of Shaun's life. I can feel him cold, hear his last breath, see his color drain from him. I hate these memories. Pray for me.
Jesus tells us to cast all our cares upon Him. This is what I am doing; or at least trying to do. I know the next few weeks are going to be hard. We are going to have to establish a new normal. This is not something that I look forward to, but I will do it to the best of my ability as this is what healing is and what Shaun would want for us to do. But I am going to need grace.
Scottie told me today that he wasn't afraid to go to Heaven. That's because this is where his brother is. That you just have to have Jesus in your heart and then when you die you don't have to be scared. He said he wasn't scared... well just a little. Then he said that he was going to go to Heaven next, then Stephen, then Mommy and Daddy last. I hope this isn't so as I dont want to have the heartache that I am feeling yet again. But I do know if that does happen, Jesus promises to be there and carry me through it. The Footprints in the Sand poem comes to mind... "It was then that I carried you." And I do believe that Jesus is carrying me right now through it all.



The Footprints Prayer

One night I had a dream...

I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand;
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
There was only one set of footprints.

I also noticed that it happened at the very lowest
and saddest times in my life
This really bothered me, and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the
most troublesome times in my life,
There is only one set of footprints.
I don't understand why in times when I
needed you the most, you should leave me.

The Lord replied, "My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you.


John 14:1 “Do not let your hearts be troubled. You believe in God; believe also in me. 2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”
5 Thomas said to him, “Lord, we don’t know where you are going, so how can we know the way?”
6 Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. 7 If you really know me, you will know my Father as well. From now on, you do know him and have seen him.”

Grace

Overall I have had an amazing peace falling over me, one that is indescribable.  Unimaginable. Amazing. A peace that surpasses all understanding. Peace that can only be given by the Comforter.   People are walking on egg shells around me, trying not to say the wrong thing, trying hard to make it be okay for me. They are not crying, trying to laugh, trying to be happy all the time. This is hard. I want to cry with you, I want to feel the loss with you. This is why I shared our son. This is why we got so close. To not have these moments with you is a loss. Please share them as we shared all the countless appointments, the long nights, the happy times, the progress.  We are a family knit together through these experiences and I feel like they are missing, the ropes of the web being cut. Family, friends, sisters~ SHARE your heart with me. Be real. WE will get through it together. We will laugh, we will cry, we will ball. This is all part of it, of loving unconditionally a little boy on a Great Mission. We can share it and be real together.  And then maybe, just maybe, you can have a little taste of the awesomeness of our God's Amazing Grace.

14 “Do not let your hearts be troubled. You believe in God; believe also in me. 2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”

5 Thomas said to him, “Lord, we don’t know where you are going, so how can we know the way?”
6 Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. 7 If you really know me, you will know my Father as well. From now on, you do know him and have seen him.”
8 Philip said, “Lord, show us the Father and that will be enough for us.”
9 Jesus answered: “Don’t you know me, Philip, even after I have been among you such a long time? Anyone who has seen me has seen the Father. How can you say, ‘Show us the Father’? 10 Don’t you believe that I am in the Father, and that the Father is in me? The words I say to you I do not speak on my own authority. Rather, it is the Father, living in me, who is doing his work. 11 Believe me when I say that I am in the Father and the Father is in me; or at least believe on the evidence of the works themselves. 12 Very truly I tell you, whoever believes in me will do the works I have been doing, and they will do even greater things than these, because I am going to the Father. 13 And I will do whatever you ask in my name, so that the Father may be glorified in the Son. 14 You may ask me for anything in my name, and I will do it.
15 “If you love me, keep my commands. 16 And I will ask the Father, and he will give you another advocate to help you and be with you forever— 17 the Spirit of truth. The world cannot accept him, because it neither sees him nor knows him. But you know him, for he lives with you and will be[c] in you. 18 I will not leave you as orphans; I will come to you. 19 Before long, the world will not see me anymore, but you will see me. Because I live, you also will live. 20 On that day you will realize that I am in my Father, and you are in me, and I am in you. 21 Whoever has my commands and keeps them is the one who loves me. The one who loves me will be loved by my Father, and I too will love them and show myself to them.”...
 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Memorial Service and other information

Shaun's memorial service will be held on Thursday, May 16th, 2013 at Enders & Shirley Funeral Home in Berryville.  Visitation will begin at 2 p.m. and the service will be held at 4 p.m.  The family asks that you wear a superman (SuperShaun) t-shirt on that day to celebrate Shaun's heroic battle.  If you can't make it to the service feel free to send a picture through email to the Steyaert family to show your support.

In lieu of sending flowers, Shaun's family asks that you consider the following places to send a memorial donation in Shaun's memory.

• TGen~ Center for Rare Childhood Disorders -special tribute for Shaun found at the link provided
• University of Virginia Health System: Children's Hospital 0-2 Educational Program
• Blue Ridge Hospice

As stated in an earlier post, what the family really wants is that you do an act of kindness in Shaun's name.  If you are looking for a practical way to help the Steyaert family, some suggestions can be found on the "Helping in Crisis" post.

Also, please note that Donna Hess, who made the SuperShaun t-shirts (with the Superman logo and two Bible verses) is embroidering more that will be available for purchase at the funeral or personally.  The proceeds from these t-shirts will go towards the causes above.  You can contact Donna directly at dlhess06@yahoo.com.

Thank-you for the many ways you honor Shaun's life!

Hindsight is 20/20... and the Visions

About 2 months ago, Shaun and I had a talk. We were rocking in his room before nap and talked. I cried as I told him that I knew the day would come that he would be tired. That he would need to go home. And I told him that it would be ok. He just needed to tell me when. And he needed to show me in a big way. Then we rocked and rocked. He fell asleep on me. It was perfect.

About a week later, I was holding his hand as he was falling asleep for nap. The sense of touching Sarah when she passed, cold and stiff, came over me and I cried.

Then he got sick yet again. We went to the hospital. We talked about bucket lists. What did I want to have before he went home? I hadn't really thought about that.  I thought we were going to make it through summer because Shaun is strong in the summer. He doesn't get sick. He doesn't get colds. What would I want? I want a family picture. I want his hand prints. Foot prints. I want to go camping and make s'mores. I want lasting memories. So with help of others, his hospice team, therapists, friends and family we started making some of these things happen. I felt a sense of urgency. I needed to do it now or I wouldn't get it.

We made handprint and footprint butterflies. We made hand and foot molds. We took a snapshot of our family sitting in front of our house. We made S'mores with friends in the backyard. It was good.

Then the unimaginable happened.... I went in to wake my boy up for the morning and got him out of bed. As I laid him down on the floor to change his diaper and get dressed. As I did this, I saw a change. "What is happening Shaun?" I asked him. Tam, his Hospice nurse was looking concerned. Then his eyes went glassy. "What's wrong, Shaun? I love you." My voice pleading. Then it started. Slow and little at first. I picked him up. "What's wrong with him, Tam?" Looking for answers. She said "It is what you think. Just let him do it but you can hold him. I am going to get some medicine." The seizures got stronger and stronger and I looked to my little boy and told him, "Its going to be ok. Mommy is with you. I love you." It continued for what seemed to be ages and still got stronger and stronger.  The medicine wasn't working. Call Peter... "Shaun, Mommy knows your tired. Mommy loves you. Your brothers love you. Daddy loves you. Its ok. We will be ok. You can go home if you need to. I love you. I love you." Tears streaming. Heart breaking, pounding. Call Joy. Talk to the neurologist. She says "Call 911." Now in GO Mode.

As we were in the hospital, down at UVA, God gave me a vision. Every time I closed my eyes during the time that he was in a medical coma, I had this vision. It was sitting in the front of my eyes. In front of my nose. Right at the space you see when you close your eyes. A white robed man would be sitting. Halos of light shining all around. Dark hair, long but not too long. A face, one I can't make out completely, but a calming face. Shaun sitting on His lap. Talking and laughing. For a week he was there. For a week I could see him laughing and talking with this Man. I was comforted. It was AWESOME. When we took Shaun almost completely off of the pentobarbital, the vision disappeared. He was waking from the coma. God sent him back. His eyes opened only partially, but still opened. They weren't empty. They were pleading. I knew it was time. Call mom, Shaun's Grandma, and tell her to come.

The doctors came in. They tell me that while awake, eyes open, he is still in Status Epilepticus. There is nothing more they can do. Call and tell whoever needs to come to come. So with tears streaming, heart wrenching, eyes puffy and sore, I choke the words~ "It's time. You need to come. He's going Home soon."

Another vision came to me earlier this month while Shaun was again taking a nap... Maybe this is because my soul is quiet when the house is. Jesus was talking to many children... I couldn't see them but they were surrounding Him. Jesus said to the children, "I have a very important mission. It will be full of suffering but great things will happen. Who will go?" Every child looked around. Then in the middle of them, Shaun stood up... He was about his size now. He was wearing a green and white short sleeved romper. His hair was long and blond. His face was smiling and sweet. He stood up and with arm high in the air, said, "I will. I will go. Send me." Jesus took him by the hand and hugged him. It was amazing.

The vision of Shaun sitting on Jesus's lap, talking with Him, was so comforting to me. "Let the little children come to me, and do not hinder them, for the Kingdom of Heaven belongs to such as these." Once again these words pour comfort into my soul. Jesus tells us that His heart is for the children.   What were they talking about? Perhaps Shaun was asking Jesus to look after his family and telling him stories of the silly things his brothers have done.  Perhaps Jesus was telling Shaun, "Well done, my good and faithful servant! You have completed your mission."  When I think about the road we have been down together - and why I would be given these glimpses into something that is more than this world, I can only surmise that God showed me what I needed to see in order to continue pouring out myself to help Shaun on his mission... and to understand what He has done and is doing through the precious, short life of my son.

So what is Shaun's mission? Shaun was put here to teach us what love is~ true unconditional passionate love.  Love that God had for Jesus. Love that God has for us. He taught selflessness, compassion, how to be a better person. He wants to be a light~ shining every heart to Jesus. He shared his joy with everyone he met, every soul his heart touched. I hope that his love, the love he taught and shared, will shine through in each and every person reading this, all that knew him, and those that didn't,  passing on and on through the days, weeks and years to come. "Greater love has no one than this, than to lay down one's life for us. And we also ought to lay down our lives for the brethren." 1John 3:16.

Great is His faithfulness,
Great is His faithfulness,
Morning by morning new mercies I see.
All I have needed thy hand has provided.
Great is thy faithfulness, Lord unto me.


Service arrangements and "In Lieu of Flowers" coming soon.

Daily Sufficient Grace

^"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." 2 Corinthians 12:9

This morning when I woke up, I dreaded the day. My eyes hurt. My head ached. My soul cried. Bittersweet.  It was the first day without my youngest son - who has been a constant companion for so long.  When I woke up,  I was sad.  I didn't have alarms going off. I didn't have to give meds. I didn't get to sing "Good Morning, Shaun." It was too quiet. But as this day has gone on, I found myself more glad than sad.  This was hard for me to realize.. but it isn't because I don't desperately want Shaun to be with me. I do. But I am so glad he is free. Free of pain. Free of entrapment. His spirit so sharp yet his body so broken.  I miss him. I want him with every cell of my body. To hold him, kiss his sweet face. Oh, his face. His perfect lips. His sweet chin. The gleam in his eyes.  I loved him fiercely every moment of his life and continue to - and I realize that in loving him so much, I want the very, very best for my children.  Shaun has so long been in a broken body - and now he is able to run and laugh and play and dance with strength to match his Champion heart.  He is in the glorious presence of our Lord and Savior, Jesus Christ. That is where those who believe in and know Jesus long to be one day.  Philippians 3 tells me that "our "citizenship is in heaven. And we eagerly await a Savior from there, Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body."  It is the grace of our loving Heavenly Father, who knows the loss of a child, that sustains me now - the hope He gives that I now cling to, knowing that this is not the end of the story for any of us. Do you know the end of your story?

It sucks to be left behind.  But our race is not finished. So we are here and we press on... one minute, one hour, one day at a time.

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perserverance the race marked out for us.  Let us fix our eyes on Jesus, the author and perfector of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him... so that you will not grow weary and lose heart."  Hebrews 12:1-3

Home

"I have fought the good fight, I have finished the race, I have kept the faith."

2 Timothy 4:7

This morning Shaun was weaned off of life support.  He was surrounded by singing and loved ones throughout the day and peacefully went home to Heaven a little after 4pm- to play baseball with Jesus, as his brothers put it.  While we know and rejoice that our Champion Shaun is healed and whole now, still he leaves behind heartbroken loved ones that will miss him severely. Please pray for all who are hurting now, especially Shaun's parents and brothers, in this difficult road ahead.

1 Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. 2 And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband.3 And I heard a loud voice from the throne saying, "Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God.4 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away."5 And he who was seated on the throne said, "Behold, I am making all things new." Also he said, "Write this down, for these words are trustworthy and true." -Revelation 21

Celebrating Shaun's Life

Today Shaun turned 23 months old....

 ...and we celebrated his precious life!

We had cake with unlit candles and sang Shaun Happy Birthday.  Shaun even got a taste!

The mood was festive and there was rejoicing for sweet Shaun's life through many, many tears.  Lots of people visited... family, friends, Shaun's hospice team, Shaun's therapists... some traveling far to come.. and so much love was shared with Shaun and everyone there.  Stephen and Scottie helped other visitors decorate Shaun's room and make molds of the boys holding hands.  The sound of singing could be heard throughout the PICU as the group sang Shaun's favorite praise songs and children's songs.  Shaun always loved being sung to.  He was passed from arms to arms as everyone wanted to get ahold of him and get a little bit of Shaun snuggles.   Here are just a few pictures from this full day...

First visitors of the day... Shaun's big brothers love him so much!

Precious moments with Daddy and Shaun

Scottie could sit for hours like this...

Ms Erin spent countless hours with Shaun this past year

"Grandma Vicki" with Shaun and friend, Sarah

Cousin David drove from Alabama to be with Shaun

Shaun's cousins send their love from Ohio and South Korea

"Aunties" Becca and Alisha (and baby Sarah) snuggle Shaun.

Brothers, Stephen and Scottie, and their Mommy snuggle and love on Shaun.

There were many more visitors not pictured here, and so much more that this day held.  Perhaps we will be able to reflect and write more about it in the future.  

Before all the visitors left for the night, we spent some sweet time in prayer.  Shaun's Daddy prayed sweetly and cried.  We all cried.  This has been a terrible, horrible, wonderful day.   Tomorrow the doctors will wean Shaun off of the life supporting measures that are in place as he will become a DNR.  Pray for tomorrow.

Shaun is spending this night snuggled with his Mommy, his Daddy close by.

"Now I lay me down to sleep,

I pray the Lord my soul to keep..."