Togetherness

Gracie is in Jr. High now, so she went on her first Jr. High beach retreat this weekend!! She had the ”best weekend ever” and was in her element surrounded by her friends, staying up very late, being at the beach and studying Gods Word. Another wonderful part of it is my daddy, her Papa was the leader! He loves Jr. High and has been a teacher and” adult jr. higher” since before I came along...a long time (over 30 something years).  I have been looking forward to my children being a part of this experience for a long time!  The only sad part is I was going to be a chaperone. Due to Samuel's sickness I decided to stay home. Tim even encouraged me to go, but I knew if I left, Samuel would get worse... because that is what always happens and I knew he needed me and I didn't want to be so far away.  He has gotten sick, pulled out his feeding tube, etc. almost every time Tim or I leave him overnight. It is nice to be needed and loved, but I am sad to have missed this special weekend. Next year both of my girls will be in Jr. High, so maybe I can help. :-)

I did get to go on a date with my hubby and go see a movie with Mama and my sister, Melody this weekend! Even though I am home with Samuel most of the time, I really need these little breaks for my sanity!  So thankful!!

  We did have am uneventful weekend! Samuel slept well Saturday night (not Friday, but we napped some on Saturday) and his issues were milder. I am so thankful for rest! We decided if he had a good night we would take him to church. He did very well at church (can't say that about Micah who had brown marker ALL over his pants and body in about 2 minutes...people were wondering...). We were blessed to worship and study about having Christ's attitude of helpfulness and humility in Philippians 2:5-8. Of course, its what I needed to hear today. I pray that He will make me like Him, but my selfishness is always getting in the way! After church, Samuel was looking puny and starting to gag alot so I brought him home and Tim stayed with the others for discipleship hour. I think that very small bit of activity wore him out. I know he did enjoy the singing, the lesson and seeing some of his favorite people.  :-)

I am thankful we are all home again. Samuel was glad to have his sister time, too. <3

Gifts

I was so surprised to have beautiful ferns delivered to our house last night! My sweet friend wanted to brighten up the front and bring us some ”sunni-shine”. So thoughtful! She, too has walked through the valley.

  I have another story of a young friend's thoughtfulness.   At church each week the kids memorize verses and read several, if they do they earn”bucks”. Every few weeks they can use their earned bucks to buy little treats! Our dear friend, Caroline, who is 11 used her bucks to buy each of our children a treat, went home, wrapped each one and made a sweet card for then all.  It made their day today, each one. Selfless love and thoughtfulness. Samuel actually gave her a little grin!:-)

  Samuel did well for his stomach function test today. We found out that his feeding tube is in the right position.  The motility of his intestine is good, but his stomach function is poor. This does not gives us answers, but it does rule out the question of his tubes giving him problems. Thank you for continuing to lift our boy up in prayer and for all the encouragement!

Friends

Samuel had a rough night last night, so today he was puny and tired again, but he had some visitors that he was looking forward to. First, his almost 2 year old cousin came by. Tucker is full of life and expression! He is so sweet to Samuel. He always goes to him and lays his head on him and says ”Namel”...love it. He played with one of Samuels favorite toys and then put his hand over Samuels to help him play. I was amazed! Precious is all I can say. Thankful for the joy and laughter Tucker brings us all.

Next his best friend came over. Knox. The sweetest best buddy in the world. Knox and Samuel were buddies since before they were born. They are only 1 month apart. They each have 2 big sisters and a little brother, so they have alot in common. They also, have a special connection. I have never know a little boy as patient and kind as Knox. He sat beside Samuel today and helped him play several toys and read to him his journal.Then after about 30 min. (which is a long time) he asked Samuel if he wanted to go outside with their siblings. Samuel turned his head”yes” very clearly...which was exciting to all of us since Samuel had been barely awake all day. So, the 2 of them (with mamas in tow) went outside for a few minutes to watch the silly siblings.  Before Knox left he gave Samuel his special Buzz Lightyear toy. The rest of the afternoon Samuel either looked at it or held it. He even grinned a minute before bed while holding it tight in his hand. I have not seen him smile in days. Thankful for Knox and the special friendship they have, even without a word.

FULL :-)

Our family is full this week.... Full because of the precious people that have ministered to us through this time. We have had our refrigerator and tummys filled with delicious food. We have had precious friends and family come by to say hello and bring some cheer to Samuel. We have had calls and messages that I can't even keep up with...but love! I was told by my friend that she had a plan for my life, and I was going to have to be happy about because she and several other thoughtful people had already put this plan into action! After my mind was spinning about what else it could be, she told me that my house would be cleaned...not by me:-) . Wow! Also, friends have come and taken care of the 3 other children who have been cooped up at home and made their day... And left Samuel and me with some peace for a while. I even was drug out of the house for a little while to be treated to a pedicure! So needless to say, we are feeling very loved right now. Tim and I took Samuel to the gastroenterologist today. He will be having a test on Friday just to make sure his gj tubes are in the right place. Please pray for him to handle this well. He has been tired and miserable about 85% of the time. We have had a few times where it seems he is more like himself, but they are short. I know he is tired and worn out, will you continue to lift him up to our Father? My girls have just finished memorizing Romans 12! As we have been meditating on these verses I thought about how the body of Christ has been living these verses out to our family this week! Romans 12:10-13 NASB 10 Be devoted to one another in brotherly love; give preference to one another in honor;11 not lagging behind in diligence, fervent in spirit, serving the Lord;12 rejoicing in hope, persevering in tribulation, devoted to prayer,13 contributing to the needs of the saints, practicing hospitality. This had ministered to my soul, body and heart. Thank you again!

His plans

Wow! I was reading my favorite blog yesterday and I want to share it! It is exactly what we believe! Hopefully I can attach the link at the bottom. Please watch the video...it is powerful. Tim and I believe that God is sovereign and good in all circumstances. This doesn't mean that our hearts aren't broken. It also doesn't mean that we are not terrified about the days to come. Truly, for our family the ONLY way to even think about experiencing our worst nightmare...losing our child, is to picture him in glory and how the Lord used him in his life. When I was pregnant each time I prayed that the Lord would use my children and our family for His glory. Also, that we would be a shining light to others of the Glory of God. I DO believe that Samuel's life has been a testimony. I do believe He is using Samuel to show His glory! I know God will use our boy for a long time to ”display His works”! Thank you Lord for these promises that YOU have given us. Samuel had a rough night last night, so today he has been very tired and still. My other kids are doing good. I believe in the power of prayer and they are at a new peace about Samuel's circumstances. In some ways this is a miracle, because just a few weeks ago one of my daughters would become very angry and emotional when we would discuss samuels condition, but she now is handling things much better and has prayed for God to help her brother even if that means the worst for us. I see strength in my children that I do not have, only through the Lord's work. Also, my precious husband's back is out. It its hard to see him in pain and not be able to take care of him with Samuel needing so much care. He is pressing on today, with a cheerful heart, but will you pray with me he will feel better quickly. I know many pray for our family, we are feeling the peace that only He brings. May I encourage you to take one day at a time and find His blessings in it for only He can bring us true joy. http://theworksofgod.com/2012/04/29/let-us-stand-like-this-man/

catching up!

It has been a long time, but I am so happy to realize I can blog from something besides my broken computer! Its time for a major update! We are so blessed to have so many friends and family praying for Samuel and encouraging our family! Our God provides! This winter was very difficult for sweet Samuel. He had aspiration pneumonia many times, but thankfully we were able to treat him at home. We now have everything in our home that the hospital has, except for an I V! If Samuel needs an IV we can start it in the hospital and care for him at home. We are working very hard to keep him out of the hospital. He came to the point this winter that he was constantly on an antibiotic and steroid. In the past month he has been doing much better respitory speaking. We have new problems now. He has been throwing up and very nauseous for at least a month. It is taking a toll on his body and for the past week he has been lethargic and in pain. We constantly been on the phone with specialist trying to figure out what else to do for our precious boy. The answers were always the same.... We were doing everything we could. After this past weekend watching him struggle with severe pain... Moaning, grinding his teeth and crying (which he never does these things unless something is really hurting him) I was feeling panicked to help him

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. Finally, his sweet pulminologist said she would take a look at him...even though his lungs seemed ok. She did an exam and said he had a little redness in his ear we could treat with drops. But then the serious face came out and she proceeded to tell me that Samuels disease was progressing to a new phase. The throwing up, constant bile coming out of his tummy, and more pain all were happening because his muscles are so weak his tummy isnt working very well anymore. We have thought about this, but to hear it this week from the doctor made it real. So we came home sad, but giving all to our Father in heaven who has great plans. So many prayers were being lifted for our sweet Samuel and our family at this time and we could feel His peace surrounding us. Samuel had a rough night Wednesday, but when he woke up he had a grin on his face and was not in pain! Praise the Lord! This week had had many ups and downs, but Samuel is not on the constant pain he was in. He is struggling with naseau, etc., but we are trying some new things to try and help him and last night he slept and didn't wake up with coughing, gagging, etc.! Hurray! He is not himself...wiggly, smiley pleasant self, but he is doing a little better for the past couple of days and for that we are thankful. Please continue to pray for him.Also, for Tim and me as we make decisions that are best for Samuel. And for our children. We have a great hope because of our salvation! Here are some verses that have been encouraging to me the past couple of weeks. I have read then to our family and Samuel often. 2 Corinthians 4:7-18 NASB ”But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. For we who live are constantly being delivered over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. So death works in us, but life in you. But having the same spirit of faith, according to what is written, "I BELIEVED, THEREFORE I SPOKE," we also believe, therefore we also speak, knowing that He who raised the Lord Jesus will raise us also with Jesus and will present us with you. For all things are for your sakes, so that the grace which is spreading to more and more people may cause the giving of thanks to abound to the glory of God. 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.

7 years old!

November 8, 2004 this little boy was born...

when we met him he was perfect! 

We never could have anticipated the adventures that were ahead..

and memories,

comfort,

family,

celebration,

treasured moments,

snuggles,

special time,

friends,

fun,

peace,

a little mischief,

smiles,

joy,

endurance,

LOVE!

Thank you Samuel for giving us all of these things! 

God made you PERFECT and we love you so much!

Happy Birthday precious boy!

Jeremiah 29:11

"For I know the plans I have for you,” declares the LORD,

 “plans to prosper you and not to harm you, plans to give you hope and a future."