2 weeks ago...last moments

Two weeks ago I was holding my sweet Samuel still. He had taken his last breath at 6:17a.m. that morning.

The Lord allowed Tim and I to consider that he may be too sick and weak to keep fighting on Sunday afternoon. He had a fever for awhile, but Sunday it became very high and nothing was helping to lower it. Tim and I were by his side all afternoon with cold cloths, a little fan, tylenol & ibuprophen. His little face was so pleasant, but he was miserable. Then his o2 became so low, we had to put a cannula on his nose, which normally he would not stand, but he felt so bad he didn't care. The other children wanted to go to spend the night with their Grammy and aunts, so we let them. Tim and I sat with him in the new room enjoying the cool air conditioner and watching the sun set. Tim asked Samuel if he could see his angel and he turned his head to the right and looked at the corner! I prayed he would have great comfort! He cooled off a little and went to sleep. His breathing started sounding a little better so we thought, like every time before when we thought he was too tired to fight, he may be getting better. We continued his breathing treatments and that helped a little, it seemed. So, Tim made a comfy spot on the couch for Samuel beside me and Tim was on the other side of him and we slept for a little while. Early Sunday around 1am & 4 am he woke up struggling to breathe and his eyes were open, but he was not looking at us like normal. A few other things happened that were confusing and hard and we realized his body was not working right anymore.  Tim & I tried so hard to stay strong and comfort him all night. We sang many sweet songs about heaven and the Lord's comfort and care. We read many Bible verses and prayed many times. We held his hands and snuggled. We loved him so richly for almost 8 years and the last night was full of our love for him and the rich blessing he was and is to us. As his breathing became slower we said again his favorite verse, the 23 Psalm. Tim wanted to play the song ”Come to Jesus” for him and us. As that song played, we reassured him he was about to be healed eternally and be safe in the arms of Jesus,  at that same moment he left his body. We were broken and mourned so deeply our precious son.

We held him for awhile and then called our dear hospice nurse. We called our children and family. They came and loved on him and the Lord brought us great comfort on this day that we had all been dreading. We were able to spend awhile with his body and then we knew it was time. Tim carried him, as we always did, to the hurst that came to get him. No stretcher in the house. The funeral director said he had never seen anyone do that before and it changed his life. We loved holding our boy and helping him; that was our life.  They took him away and we held each other.

Later that night we wanted to see his body prepared before the children and that was so very hard for me. The next day I could see the value in seeing him that way.  It was just his shell, he is in heaven. It was so hard to look at him in his funeral bed, those beautiful curls and long eye lashes. He was so perfect and peaceful. He didn't look like he was in pain that last night. I am so very thankful that Tim and I were with him the whole time.
  Every day since we have tried our best to figure out how to do life with this huge piece missing. The grief comes in waves. I still think at 9 pm I need to hook up his feeding pump. Tim comes home and always came to talk to Samuel and give him a kiss first, but then stops and catches himself.  The house is so quiet without his treatments and shaking vest going. The oxygen is gone. All of his equipment and things are every where and I'm not sure when and how to move them.  And much more. The kids are sad and miss him, but they are doing better than we expected; their grief is there and they are expressing it in there own ways. Tim and I and all who love him are missing him and mourning.  We feel a hole in our hearts so deeply it is painful at times.  If you ask us how we are we may not answer, because we are sad but don't always know if the person asking really wants to know. We do rejoice that Samuel is healed and is Glory, but it is painful to know we will never him here again. He was a precious saint and touched so many lives. We will always be thinking about him and missing him, everyday. Today I am thankful for His promises that are carrying us through this new life without Samuel and knowing that he is in heaven and happy and perfect in Jesus arms.

Psalm 23:4
”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. ”

We also sang this song to him many times over the part few months. A friend sent it to him and he knew it well. We sang it his last night and at his funeral. It is Samuels song.

”And on that day
When my strength is failing,
The end draws near
and my time has come,
Still my soul will sing
Your praise unending,
10,000 years and then forever more!
Bless the Lord, o my soul,
Worship His Holy name.
Sing like never before,
Oh my soul, I worship Your holy name

Watch "10,000 Reasons (Bless the Lord) - Matt Redman (Best Worship Song Ever) (with Lyrics)" on YouTube

Samuel

The Lord blessed us with a special gift... Samuel. He turned seven on November 8 & is the sweetest child most have ever known. He always had a smile on his face and captured all who met him with his beautiful blue eyes and curly blonde hair! He also had special needs. He passed away on September 10, 2012 from Leigh's Syndrome a mitochondrial disease. It affected the movement center of his brain, so everything from his fine motor skills to eating have been damaged. There is no cure. It also caused him to have major respiratory trouble. He was not able to talk, but spoke volumes with his eyes, he even had a Tobii eyegaze computer that he loved! He could not sit up, walk or even hold his head up without assistance. He had surgery in May 2008 to get a feeding tube because he was not able to eat enough due to poor muscle tone and control, but he did love food! He taught us and touched our lives more than any other person. He taught us to treasure each moment, to be content in all circumstances and to put our faith in God through it all. His smile was contagious, his laugh was like music to our ears and his heart was pure. He loved his family and friends. He loved music, dancing, snuggles and kisses. He always wanted to be holding our hand and will forever hold our hearts. Our hearts will never be whole again with him gone, but we rejoice that he is now healed and whole. He is praising our Lord and running on the streets of gold. He is perfect. We praise the Lord for giving Samuel to us for almost 8 years and we will treasure each and every memory.

Blessings, Tim, Mary Elisabeth, Gracie, Annaleigh & Micah Cutliff

Samuels homecoming

Our precious boy took his last breaths yesterday morning with his Daddy and Mommy by his side. I will blog more about our sweet time together later, but in case you didn't know already I wanted to let you know.
He was truly a gift from God and we were blessed to have him for almost 8 years. He was our ”Super Samuel”. He will be missed by all who knew him. Please remember our family and friends as we grieve our sweet boy. We rejoice that he is in the arms of Jesus and running, singing and rejoicing!

Samuel L. Cutliff Obituary: View Samuel Cutliff's Obituary by Anderson Independent-Mail

”Lay me down”

For my birthday gift, Tim and I were blessed to go to the Chris Tomlin concert at the Biltmore house! It was actually right beside the house on the terrace. As we sang the beautiful worship songs we were surrounded by the majestic mountains and a fiery red sunset. The glory of the Lord truly surrounded us! It was glorious! Tim and I were also blessed with 24 hours together (kid free)! It was peaceful and just what we needed. My precious sister and mother were confident in taking care of Samuel . He has been sick for so long and up so much at night. A good nights sleep was a gift in itself! They were up for several hours with Samuel, but cheerfully did this so that we could have a break. I am so thankful! Mama even had the family over Sunday night for a party! She made my favorite, her special lasagna and the sweetery cake! Yum!
  As we were praising and worshipping together at the concert he introduced us to a new song, ”I lay me down”. I gave my life to the Lord when I was young and have always strived to live each day for Him...which is a constant struggle because of sinful nature.  When I sing a song, I focus on the words and part of this song was difficult for me to sing, because I desire to live it wholly, but it is hard right now to say ” it will be my JOY to say, Your will, Your way”. I am not sure how to say, with joy, it's ok for my boy to struggle and leave us.  It has been difficult the past couple of weeks to watch him battle fevers, almost constantly, To watch him struggle to breathe easily, to see him looking worn out. Samuel has been such a blessing to so many and I know the Lord has a plan.  This little boy, who has never  spoken a word, verbally, has taught many things... from being content amidst your circumstances and trusting the Lords plan to how powerful a smile is...and much, much more! I am thankful today for the promise in the Bible that says this...

Isaiah 40:28-31 NASB

”Do you not know? Have you not heard?
The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired.
His understanding is inscrutable. He gives strength to the weary,
And to  him who  lacks might He increases power. Though youths grow weary and tired,
And vigorous young men stumble badly, Yet those who wait for the LORD
Will gain new strength;
They will mount up  with  wings like eagles,
They will run and not get tired,
They will walk and not become weary.”

How precious to think of Samuel ”gaining new strength” and running and walking and worshipping the Creator. Thank you Jesus, Son of God, for the promise of heaven!
I pray my Father will bring us His joy, even in the midst of great trials. And may we all lay down our will, no matter how difficult and say ” It WILL Be my JOY, to say, Your Will, YOUR WAY, JESUS!
Watch "Lay Me Down - Chris Tomlin Ft. Matt Redman (Passion: White Flag)" on YouTube

My new favorite praise song! Watch "Jesus Son of God - Chris Tomlin & Christy Nockels - Passion 2012 - White Flag - (WITH LYRICS) (HD)" on YouTube

Loving unconditionally

I have been greatly encouraged hearing from so many friends who ask about Samuel and missed reading the blog!:-)   We are very thankful for all of our prayer warriors, friends and family!
We have had many things going on! Samuel has been stable these last couple of weeks. His fatigue and stillness are becoming the new norm. for him. He is still frequently uncomfortable and has been running a fever for a couple of weeks. We are not sure why he has a fever, but it may be what my friend calls a” neurological fever”. Right now I am holding him while he sleeps. I came in to check on him and he looked miserable, but when I picked him up he settled down and fell asleep! I am thankful he feels comforted in my arms right now.
He is not cheery and happy like he used to be, so when we see a small grin it is wonderful!
The last couple of weeks he has mostly been home resting off and on. Even though he did not feel good, I have taken him to the pool because it seems to perk him up for a few minutes.
His girlfriend Lydia was able to come and swim along with her twin sister. Our other dear friends, the Dances came, too. It was a very special day with special friends! It was neat to see how the siblings were such” little caretakers” and were happy to help their mamas with their special sibling. The Father has blessed my children with friends who are also learning how to love and care for a special needs sibling and this relationship is precious!  It was a beautiful day to watch all of the children interact. It reminds me of how we all should love unconditionally, treat each other and be willing to be servants.
My own precious children are constantly loving & serving Samuel (even though he cannot give then anything in return, except sometimes a grin). Micah laid down beside Samuel last week and held his hand and said he just wanted to snuggle with his brother. Annaleigh asks almost daily to hold him for awhile. Gracie loves to entertain him to get a smile, by falling on the floor or jumping around and acting silly. I know this road we are on is difficult, but I am thankful that He gives is strength each day and my children are learning to love unconditionally.

We have had so many exciting things happening at our house! We have a new wall at the front door and now Micah has his own room!!! He and Samuel have been sharing and since Samuel has been up so much at night, Micah hasn't been sleeping as well. Now they both have their own space and it is wonderful! Micah can play with his trains and legos and be noisy in his new cowboy room! His precious friend Jake passed his entire cowboy room to Micah! What a blessing!!  He loves it so much! It had changed his life! Samuel has a recliner in his room now, thanks to Memaw, so we can sit with him, rock, read books and I can sleep by him when he needs me to! He also can sleep peacefully, since his brother isn't in there being noisy. :-)   Our converted garage isn't quite done but its getting close! Please continue to lift up Tim in your prayers, he is still in pain from his wreck. He is still doing so much, but it has been difficult for him.  I am thankful for the exciting changes in our home and Samuel is excited about having his new therapy area to hang out in (since he is usually home in the living room).  Its bright and cheery with lots of sunlight! Even though its not ready yet, we still take him out in his wheelchair and read by the window.
I will post some pictures of the last couple of weeks! I'm glad to share some sweet visitors and happy memories! Thank you for continuing to pray for Samuel and our family and ministering to us faithfully!

Matthew 11:25-30 NASB

At that time Jesus said, "I praise You, Father, Lord of heaven and earth, that You have hidden these things from the wise and intelligent and have revealed them to infants. Yes, Father, for this way was well-pleasing in Your sight. All things have been handed over to Me by My Father; and no one knows the Son except the Father; nor does anyone know the Father except the Son, and anyone to whom the Son wills to reveal Him. "Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light."

Thankful for the promise of His rest for our souls.

”Mercy comes with the morning”

If you were driving around last week, you may have passed me driving and noticed me singing very enthusiastically in the van. Ha! I took Samuel to the Dr. and was listening to a cd I made back in 2009 of my favorite songs that year.  One of my all time favorites is this one I'm sharing tonight.  Its by Brooke Frasier called ” C..S.Lewis song”.  It is one of my favorites (I have alot of favorites)! If you listen to it you should close your eyes and try and focus on what she is saying... I wish I could attach just the song with no pictures, but I am not that comport savvy!
"C.S. Lewis Song"
If I find in myself desires nothing in this world can satisfy, I can only conclude that I was not made for here. If the flesh that I fight is at best only light and momentary, then of course I'll feel nude when to where I'm destined I'm compared.
[CHORUS:] Speak to me in the light of the dawn, Mercy comes with the morning. I will sigh and with all creation groan as I wait for hope to come for me.
Am I lost or just less found? On the straight or on the roundabout of the wrong way? is this a soul that stirs in me, is it breaking free, wanting to come alive? Cos my comfort would prefer for me to be numb, And avoid the impending birth of who I was born to become.
[CHORUS]
[BRIDGE:] For we, we are not long here. Our time is but a breath, so we better breathe it. And I, I was made to live, I was made to love, I was made to know you. Hope is coming for me. Hope, He's coming...
This songs gives me chills and makes me so excited about the promise that Jesus gives us that He is COMING! And He is our HOPE!
I need this reminder constantly, especially after a weekend like this! You may already know, but again, I thought we were going to lose Samuel on Saturday. He had a great week last week and we are so grateful! He was himself, happy, not throwing up much at all and enjoying life. We even made a pitstop at Chick E Cheese on our way to the pulminologist! After not going anywhere for weeks, it seems, except to the Dr., it was good to get out for a few minutes while he was doing a little better!
Anyway, Saturday he was tired and feel asleep in his beanbag and he started coughing and within seconds, was in respiratory distress, fast heartrate, low oxygen and fever! After doing breathing treatments with o2, medication and lots of suction he still was not doing better. He usually responds after all of this and starts calming down, but after 2 hours he still needed oxygen and his respirations were too fast. I decided to alert the family and a few friends to pray. Within 10 minutes he was calming down! Wow! They power of prayer! He did struggle several times off & on and I have been constantly checking his sats and doing treatments and medication, but tonight he seems to be about normal!  Praise the Lord in all things, but I am so thankful for more time with my boy! He, of course, is weak and today was not well at all, but at least he isn't struggling to breath and suffering.
After a weekend like this...with Samuel struggling so much, Tim still in much pain from his wreck and coming down  with a respiratory infection, the house out of sorts because we are converting the garage into a school + therapy room and the old school room into a room for Micah, we needed some relief!
It doesn't mean things are easier, but a few hours to sit and reflect and be thankful for today is what I need right now.
Speaking of today, we had an amazing surprise come to our house!  We celebrated everyones birthday...today...how many days they were, to be exact!  My sweet friend Heather called and asked if they could come and visit Samuel and said she was bringing lunch. When they arrived she had printed out how many days old each child was today (she said ours was depressing and we didn't need that). She brought balloons, chicken nuggets for the kids, quesadillas for us moms and angry birds cupcakes! It was wonderful! Samuel was very tired and not himself, but a little while with his best buddie Knox, and he perked up a little.:-)  I am thankful for time with friends & celebrating our days...as the songs says ” our time is but a breath, so we better breathe it”. 
Mercy did come today, and I am thankful. I am also thankful for all who have prayed and are praying for our family, we do need it desperately right now. Your prayers, encouragement, meals and love have given us great encouragement! I am thankful for my Father, who has given me great hope!
2 Corinthians 4:16-18 NASB
”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 an 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 seen are eternal.”
C..S. Lewis song...enjoy!

 http://www.youtube.com/watch?v=PycBrNP8dXg

Rollercoaster

First of all I am so very thankful for the good day we all had on the 4th! It was good for all of us to see Samuel well! If you haven't noticed...our life is like a rollercoaster. Up & down constantly! He is good, then he is terrible. So  Friday night about 6 pm Samuel began to throw up and.aspirated worse than ever before! I frantically tried to help him by turning him on his side. He needed oxygen and major help clearing his lungs. His o2 was very low and he was again in respiratory distress.  I was thankful Annaleigh & Micah came running to help without being asked. Annaleigh ran to get some medicine to help calm him and Micah wanted to hold the oxygen for Samuel while I suctioned for over an hour! Those 2 are amazing! Gracie was out sewing with grandma. Tim came home and we continued together to help our little boy. Once he finally calmed down he went to sleep for the night. He woke up with a fever and probably had pneumonia again. Praise the Lord for his smart vest and nebulizer treatments!
I started to write this on friday and then was so tired I fell asleep! So now I am updating (Monday). We have had a battle with the beeper all weekend!!! You see, his feeding pump gives him formula at a slow rate about 20 hours each day & night. Well, his j tube (through his intestine) has a kink in it... So the pump can't pump and sounds an alarm, all day and all night (off and on). I can reposition Samuel and try and work it out with warm water in a syringe, but the beeping always comes back!  He is having a procedure right now to try and fix it.
He has been so happy this morning even though he has refluxed and thrown up. He took a good nap too. I am always feeling better about things when he is happy.

Thankful today for his happy heart and peaceful rest.

Proverbs 15:15
”A miserable heart means a miserable life;a cheerful heart fills the day with a song.”