Sweet angels

We have never met and don't even live close, but we are blessed to know and pray for other families who have a child with mito. 2 of these precious children have passed away this week.
Corban was not even one year old, yet. He was smiling, starting to say Momma and even crawl! And all of a sudden he was sick and just as quickly, rested peacefully in his mothers arms.
Little Mylee, also passed away. She was 5 and could walk with a walker! She was such a beautiful child, full of life.
I don't even begin to know how to handle losing my child.  Night before last Samuel was up most of the night coughing, throwing up, gagging and needing constant suctioning. In the midst of fatigue, and all of this, he looked up at me and gave me the sweetest smile, as if to say, thank you mommy for being with me, I love you. I will never forget that look he gave me. It melted my heart.  I thought to myself, I would rather be sleepless with him, than without him. I am heavy hearted for these precious children and now for the families they are leaving behind. I pray that there will be a cure for mito soon!!!  Please pray for these families as they try to live each day without their child. I pray they will be given great comfort and peace from our Lord.

Thankful today that Lydia (girlfriend) may get to go home today!!! And Samuel did very well for his gj tube switch out this morning! Also, for friends and the support the Lord blesses us with in this life and the HOPE we have!

* 2 Corinthians 1:3-4 NIV

”Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

What if your blessings come through raindrops?

This song called ”Blessings” is such a powerful lesson.  Most people think life should be good. The ”blessing” is smooth days, health and to be financially secure. 
But,
” We pray for blessings, We pray for peace, Comfort for family, protection while we sleep. We pray for healing, for prosperity. We pray for Your mighty hand to ease our suffering .All the while, You hear each spoken need, Yet love is way too much to give us lesser things.

'Cause what if your blessings come through raindrops? What if Your healing comes through tears ?What if a thousand sleepless nights are what it takes to know You're near ?What if trials of this life are Your mercies in disguise.

We pray for wisdom, Your voice to hear. We cry in anger when we cannot feel You near. We doubt your goodness, we doubt your love . As if every promise from Your Word is not enough. All the while, You hear each desperate plea, And long that we'd have faith to believe.

When friends betray us, When darkness seems to win, We know that pain reminds this heart That this is not our home.

What if my greatest disappointments, Or the aching of this life , Is the revealing of a greater thirst this world can't satisfy. What if trials of this life... The rain, the storms, the hardest nights Are your mercies in disguise.”

As far as my life goes, even though it is hard. Even though I never expected to have a child with special needs... God knew that we needed him and he needed us. For without the trials and the learning to seek God through the pain, we may not know our desperate need for Him. 
” The only way to learn a strong faith is to endure great trials. We learn by standing firm amid the most severe of tests.” -George Mueller

Isaiah 41:10
” Don't be afraid, because I am your God. I will make you strong and help you; I will support you with my right hand that saves you.”

Thankful for His promises.

P.s. Alisa, I love my book!  There is a devotional by the same title and author that is wonderful.

http://m.youtube.com/#/watch?desktop_uri=%2Fwatch%3Fv%3DeOOFAaUGfRE&v=eOOFAaUGfRE&gl=US

Girlfriend ...by Samuel

There is a girl who I love to see, she is my sweetie and forever will be.
She cannot tell me sweet things or write me notes. She cannot give me hugs or help me play with toys. All I need from her is a smile, it brightens my day, every time! Her name is Lydia and I like to call her my girlfriend. Even though she has been in the hospital for a few weeks she always smiles. Please pray for my friend to continue to feel better and for her shunt to be free of infection so she can go home soon ...and come swimming with me! :-)  
Lydia and I have been friends since we were really little and had therapy group together. We love to hang out together at special olympics each year. We also love to party together at family connections events! We even went to school together before I started getting too sick.  She is one of my best friends! We also love to try and hold hands. Every time we are together we reach toward each other and hold hands <3
I am thankful for my friend, Lydia. Her smiles and hand holding makes me so happy!:-)

Get better soon Lydia! We love you!

Papa & the pool

I am thankful for a good day today for Samuel! He has had major respiratory issues lately, but today was a better day! He actually felt well enough to get in the pool for a little while! He was so happy and more like himself again today! He also was happy to spend time with family and celebrate his Papa turning 58! 
  Papa is more like a big kid! He is always so happy to be with his grandchildren and family. He calls all of his children almost every day just to say hey and bring us a smile. He loves to serve with his whole heart. He is never still! He has worked with Jr. High for over 30 years and loves them!  He loves to snow ski, hike, and go on adventures. He loves the Lord and taught us to always have a ministry to bring others to Christ. He always takes time to sit with Samuel, talk to him and say I love you. He is a blessing to our family and others who know him. Happy Birthday Daddy!
  I am so happy Samuel felt well enough today to go outside and enjoy everyone! We are thankful today for family, the pool, smiles, silly uncles (pictured below) and Papa!

Proverbs 17:6 NIV

”Children's children are a crown to the aged,
and parents are the pride of their children.” 

Extra*Special friends

Today, as I count each blessing, my heart is heavy for the children who are sick.
  Forefront, on my mind, are the children that I know and see. My child, who each day is struggling, is first in my heart. He had an ok day today. He was very still today, very tired and coughed and gagged alot. I am very thankful the stuff from his lungs is coming up, but I know it makes him throw up more often and choke. I thought earlier this week that he, again, may not get through this pneumonia.  The steroids and antibiotics are not helping like they used to. After he finished the medicines, he still had a fever. We decided to use his therapy vest (aggressive chest pt) and his nebulizer treatments 4 times a day!  I am thankful this helped him and the fever is gone!  It is hard not to have his smile often, see his eyes shine and watch him get excited about a toy or activity.
I am also, thinking about our friends who are also taking care of their precious children. The Lord has brought me close to several children who are ”medically fragile” and their parents. I am thankful for their friendship and the support we share on this difficult journey.
Today, I was reading about a little girl, who is 5, her name is Mylee. She was so full of life and this week her parents are by her side praying for a miracle, but knowing she may be at the end.
  Will you join me as I pray for these children and parents? These are Samuels special friends and their parents are pretty amazing, too!

These are the faces we know personally and live near us:
-Daniel http://asthejohnsonsworldturns.blogspot.com/?m=1
-Sadie http://www.caringbridge.org/visit/sadiesterling, 
-Lydia (in hospital right now)
-Abby facebook pray for Abby Rose,
-Preston,
-Grayson,
-Caleb B.,
-Garrett &
-Hayden.

We also pray for -

-Noah@prayingfornoah,
-Mylee http://www.caringbridge.org/visit/mylee%20
-Ilona  http://www.caringbridge.org/visit/Ilona/mystory
-Melanie http://www.caringbridge.org/visit/melanie

Thankful for these extra special children and the special way the Lord is using them, even though each day is difficult.

James 1:12

”Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which  the Lord  has promised to those who love Him.”

Camping fun with Daddy

  For the past several years Tim has taken the kids on a Father & son/daughter camp out. Camping out to him is not in a camp ground.. Its backpacking and hiking about a 1/2 mile, sleeping in a tent or a ”Eno” hammock (what he prefers).  So he packed up with our girls and Micah and headed up to Burrells Ford of the Chattooga River.
   This is one of my kids favorite time every year! They make hotdogs over the camp fire, make special ” banana boats” introduced by Mr. Art, and smores! They also fish, hike and play games around the campfire.  They had a special time together and caught alot of fish:-)  I am thankful for the sweet Daddy that Tim is and for the fun they have together.  Of course, he would love nothing more than to have Samuel with them, but this is an event that he cannot go to. We have taken him camping, but he does not have the energy or wellness to go now. He had some special Mommy time instead.   Even though he had been feeling bad today he smiled when Tim walked in the door straight to him to talk to him. He is such a Daddys boy! The special connection they have is precious to behold.
Thankful for the amazing Daddy Tim is today and every day:-)

Friends and flowers

I am daily overwhelmed with the gifts of encouragement, love and friendship the Lord has blessed us with. Several sweet friends have brought us beautiful flowers to enjoy.  Never have we had so many beautiful flowers (from gardens) everywhere to enjoy! Then,Tim brought me 15 roses for our anniversary! They are beautiful! <3
We also have had other sweet and yummy gifts that we are enjoying! Thank you so much for blessing our hearts!
Samuel does have a fever again and has been puny today. His lungs sound clear, so I am not sure what is going on. Please pray for him to be comforted and not be in pain.
  Tim took the other 3 kids camping last night, so Samuel and I had a sleepover with my dear friend Alisa!  She was gracious to offer to come over since she knows Samuel is up alot at night and I am diabetic so she is concerned about me home alone, too. She told me she prayed Samuel would sleep better last night and he did have the best night he has had in over a week!!!  Anyway, We never get to do this so we were very excited! We watched movies and laughed, alot! It is such a gift to have such wonderful friends, who love us and support us through so much! Alisa and her hubby, Andy have been our friends for over 16 years.. And have been there for everything! The babies, my pacemaker surgeries, fishing, camping, crafting, birthdays, swimming lessons, etc..... She knows me well and loves me just the way I am and encourages me through it all. I dubbed her ”my big sister” a long time ago!   Her hubby, Andy comes over often and gives Tim a hand outside with the projects they start.. A true friend! Her girls and mine have been close friends since before birth! They are dear to our family! I am thankful for these friends and many others who love our family and are by us through it all.  Thank you Lord, for the gift of friendship and encouragement!
  We have such overwhelming love and support in our family, church and community! And today Samuel and I are enjoying holding hands and relishing the peace, flowers and happy memories that we have made with so many today, yesterday and over the years.

15 years ago today

”Just as Christ loved His Church, I will love you and I will cleave to you, remembering at all times that such love is patient and kind. It does not envy or boast, it is not proud or rude. It is not self seeking and it is not easily angered. It keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes and always perseveres. Love never fails.” Eph.5:25; I Cor. 13
  This was part of our vows to each other 15 years ago today. Little did we know all we would go through together.  It has not been easy, but through it all you have been faithful and taken care of me and our children. I am so very thankful for the gift of my precious husband today and every day!

  We were able to have a special day together! We went out to eat, to a movie and then kayaking in the Hartwell lake! It was a sweet time together! Thank you so much to little sister Melody who was brave enough to keep the kids and give us this special time! Truly a gift! 

  I will be here...
http://m.youtube.com/watch?desktop_uri=%2Fwatch%3Fv%3DO1KsGtMZ9HI&v=O1KsGtMZ9HI&gl=US

Miracles!

I believe I witnessed a miracle today. Yesterday, Samuel was not doing well. His biggest risk is respiratory issues right now. He has aspirated so much that he could easily have gotten pneumonia over the past month, and that is serious.  On Saturday his high fever and congestion in his lungs started.  I immediately knew the signs (of aspiration pneumonia) and started an antibiotic and steroid immediately. He started to do better by late Saturday afternoon. Sunday he was ok. But on Monday his fever became much worse.  His little body is so worn out and we were not sure if he was strong enough to fight it. We spread the word and so many were praying for him.
  Last night at bedtime his fever started to drop and in the night he was cooler! By this morning he had no fever and his lungs sounded much better!!! Even though he was up alot in the night, I think he just wanted to sleep in Mommy and Daddys bed (pictured below.. Happy boy)! He has even been more like himself today!
  His neurologist had ordered a CT scan and Samuel actually feel asleep and they were able to get a quick picture of his brain and he had no idea! You see, usually he is very wiggly and would have probably become upset, but he slept!!!
  So today, I believe I witnessed 2 miracles. He always hears us and always answers, but sometimes its not what we want. I am thankful today for the prayers of the saints and Him answering our request! It was good to take a breather today! God is good, all the time. All the time God is good.

Psalm 23:1-6

”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.”

Is it well?

I have had in my head continually today one of my favorite hymns... Or it used to be. You see, I love to sing and I especially loved ”It is well”. I truly  believed every word! When I found out my little boy had something wrong with him, it became harder for me to sing it heartily. Then I lost 2 babies to miscarriage and it became even harder. In the last couple of years it is almost impossible. I want to sing it, with joy, but I become too emotional and begin sobbing instead. It is a beautiful song, written from the heart of another parent. The man who wrote it lost 6 children of his own... Six.  He actually wrote the song after several traumatic events. He lost his only son at 3 years old. It was after that he lost his 4 daughters who drowned in the sea. Then later he and his wife lost another baby. They had 2 daughters that did live. I simply cannot imagine. This reminds me of Job and his trials. He was a godly man, but lost his children, his cattle, his wealth, and his health for a while. All the while he praised God through his pain.
I do love this hymn, but when we truly think about what we are singing the meaning of the song becomes even more beautiful. I can only pray to obtain this faith.

Many people have asked my family if we are prepared. I don't know how to prepare. I know that we can pray for His mercy and comfort. I know that we can read His word together and to Samuel, but how can I ever be ready to lose my child? We have known for a long time that Samuel has a progressive disease and the ”spots” on his brain are damage that are irreversible. I do know that we are blessed with so many people lifting us up to our Father and He is covering us with peace. I took a nap today because Samuel had been up since 3:30am and did not find rest the rest of the night. I had a dream of him running and laughing in heaven surrounded by our friends babies and children who are there. It was peaceful. But at the same time we don't want to lose our child. I still cannot fathom how to deal with that? No matter what happens it will be painful... Watch him suffer and be in pain, or lose him. May God continue to give us his peace and comfort.
     Our family did have a sweet time together tonight. Samuel has aspiration pneumonia right now and his fever has not been responding to antibiotic, steroid and advil and tylenol all day (after over 48 hours). But by 8 pm his fever finally dropped to 99.6! Also, Micah was being so silly and making us laugh. Gracie and Annaleigh shared with Tim and me some verses that they are memorizing and what they are learning. I am so blessed by these children and all they are teaching me. I even sat outside tonight while Tim worked on the pool and the kids caught fireflies and Samuel hard a bullfrog and did a little giggle! :-)
   I am thankful today for this hymn, even though it may be difficult to sing because ”Christ had regarded our helpless estate and has shed His own blood for my soul! Praise the Lord, praise the Lord, o my soul!” May in all circumstances we say, it is well with my soul because He is sovereign.

It Is Well With My Soul

When peace like a river, attendeth my way, When sorrows like sea billows roll; Whatever my lot, Thou hast taught me to say, It is well, it is well, with my soul.

Refrain: It is well, (it is well), With my soul, (with my soul) It is well, it is well, with my soul.

Though Satan should buffet, though trials should come, Let this blest assurance control, That Christ has regarded my helpless estate, And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought! My sin, not in part but the whole, Is nailed to the cross, and I bear it no more, Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live: If Jordan above me shall roll, No pang shall be mine, for in death as in life, Thou wilt whisper Thy peace to my soul.

But Lord, 'tis for Thee, for Thy coming we wait, The sky, not the grave, is our goal; Oh, trump of the angel! Oh, voice of the Lord! Blessed hope, blessed rest of my soul.

And Lord, haste the day when my faith shall be sight, The clouds be rolled back as a scroll; The trump shall resound, and the Lord shall descend, Even so, it is well with my soul.

Horatio Spafford

  Here is also the link of one of my favorite groups singing it is well. These 2 both have babies in heaven.
http://m.youtube.com/#/watch?desktop_uri=%2Fwatch%3Fv%3DDkHeoM2Fys0&v=DkHeoM2Fys0&gl=US

Pictures are sweet visits and celebrations over the past week or so... My nephew, Tucker turning 2, my neice, Chloe Bekah turning 1, Tim making a tent with the boys, the Grandmas and friends visiting this week.