Look at how handsome Sam is and look at his smile...I could just watch him smile all day. He has one of those smiles that God made precisely for Sam so that when Sam smiles...everyone and everything around him fills up with the Glory of God.
As of January 26th Sam has been 2 months without Seizures!
Here is Sam with his family...His incredible parents, Jeff and Leslie and all of his wonderful brother's and sister's.
The Battle family looks like they just have too much fun! They are so blessed to have Sam to complete their family and Sam is so blessed to have so much love and support surrounding him on a daily basis.
Sam's mommy sent me this e-mail yesterday and I am honored to share Sam's story with you...although, the Sam's story is really "Sam and Charlie's" story...do you know Sam has a twin! Here is a few pictures of the twins before I share the story Leslie e-mailed me.
Sam and Charlie's Story
At week 6 into our 4th pregnancy, Jeff and I found out we were expecting twins. At week 15, we found out that our twin identical boys were suffering from a rare Twin to Twin syndrome. Sam had vessels passing his nutrients to Charlie. Both boys were in serious danger and given a 5 % chance of survival. Jeff and I were sent to Atlanta to discuss options. Opt. 1 - terminate the pregnancy. Opt. 2- Tie off Sam's vessel sacrificing him to save Charlie. Opt. 3 - undergo experimental surgery in Tampa, FL to laser the vessel and try and save both twin. Without a doubt it was opt. 3 and Sam and Charlie's fight began.
If that was not enough, my membrames ruptured 14 weeks before their due date, and the twins had to be taken emergency c-section 3 months premature. With each having a 3 month NICU stay, Sam suffered the most issues and coded twice to be brought back by his nurses. Twice we were called back to the hospital to say good-bye and many times had to okay treatment that was not "FDA approved" for his age and size. We figured we would fight as hard as he was fighting to be part of this life!
Sam left the hospital 88 days after his early birth (just 6 days after Charlie).
If that was not enough, my membrames ruptured 14 weeks before their due date, and the twins had to be taken emergency c-section 3 months premature. With each having a 3 month NICU stay, Sam suffered the most issues and coded twice to be brought back by his nurses. Twice we were called back to the hospital to say good-bye and many times had to okay treatment that was not "FDA approved" for his age and size. We figured we would fight as hard as he was fighting to be part of this life!
Sam left the hospital 88 days after his early birth (just 6 days after Charlie).
In the months that followed, Sam was given diagnosis of Cerebral Palsy, Periventricular Leukamalcia (brain injury), Cortical Visual Impairment, Pulmonary Valve Stenosis, Lennox-Gastaut Syndrome -incurable epilepsy, and infantile spasms. But he continues to fight and win in spite of his disabilities.
I asked Leslie to send me some of the different things that Sam like's and dislike's so that we can all get to know Sam more and more!
Sam's Likes
-Sam loves music. His favorite songs range from 5 Little Monkeys to to techno-disco. He loves listening to his dad's tech pod-casts while waiting for his breakfast in the morning.
-He loves his Brainy-baby piano and his storybook that runs on a switch he can hit with his left hand.
-He can work a adapted joystick-switch to activate computer songs, but he gets really impatient if the technology does not work as fast as he thinks it should :)
-Sam goes to school two mornings a week at a 3 year-old special needs class at WRES. He loves his teachers, therapists, and his one-on-one assistant. He brings home pictures and paintings that we hang on the fridge beside his twin's art work from Montessori.
-He can work a adapted joystick-switch to activate computer songs, but he gets really impatient if the technology does not work as fast as he thinks it should :)
-Sam goes to school two mornings a week at a 3 year-old special needs class at WRES. He loves his teachers, therapists, and his one-on-one assistant. He brings home pictures and paintings that we hang on the fridge beside his twin's art work from Montessori.
-Sam has an identical twin and 3 other older siblings who he adores! When he hears them speak, he starts making sounds and fidgeting until they come and pick him up. His first and only word was "hey" when the phone would ring, until he begin calling his 15 year-old sister, Chloe - Bu-ba.
Chloe has to be the only southern female I know that was thrilled about being nicknamed Bubba!
-Sam loves outdoors, the water, swinging and cuddling.
-He is very comfortable with people bending to his level and speaking very close to his ear. He has a very acute sense of how comfortable people are with him and in turn, it determines his comfortability with them.
-He does not like riding in the car too long, vacuums, and being surprised by "Happy Birthday" songs at restaurants -oops!
He is the most difficult, yet most wonderful thing that has ever happened to me. He is innocent in is purest form. He loves unconditionally and trusts without hesitation. With all his issues, his specialists are constantly amazed at how happy and pleasant he is. Our family would not be complete without Sam.
What an amazing story and an amazing family.
I think it is more than safe to say that both Sam and Charlie are miracle children. They are God's miracle children who picked Leslie and Jeff before the beginning of time to care for Sam, to love Sam, to be blessed by Sam, and to be one of the chosen few families to have a child with special needs so that by being close to Sam...they can constantly be close to God because Sam's heart is in perfect rhythm with the God of the Universe. The God of the Universe who is so big that he sets the stars in place, he not only sets the stars in place but has named them all...Our God is a big God but He is also like you and me and walks beside all of us who call out to Him and longs to have a personal relationship with each one of us who seeks to have a personal relationship with God.
I can only imagine Sam's personal realtionship with God...oh if I could be with God for just one day the way Sam is with God everyday...I am confident that I would be closer to God in that one day then inthe 11 years I have walked with God.
I love what Sam's mommy says towards the end of her e-mail..."He is innocent in its purest form. He loves unconditionally and trusts without hesitation"...this reminds me of a song I use to listen to when I was in youth group, I can't remember the name of the song but I can remember some of the words...
"Give us clean hands, give us pure hearts, let us not lift our souls to another"...those are the only words of the song that I remember but they are the only one's I need to remember.
We are suppose to come to God asking for forgiveness and God most willingly forgives us and makes us pure and clean in heart so that we can be close to Him. We are suppose to be pure as God is pure and we become pure by asking God for forgiveness but Sweet Sam, he is pure all of the time, he is so innocent and loves and trusts God unconditionally...he doesn't ask questions or lift his soul to the idols of this world...he just trust his family and God completely and without hesitation and this is a lesson we should all learn from Sam.
Do you trust God without hesitation? Do you love unconditionally? Do you lift your soul to any other idols? Do you strive to be pure in heart?
We all have so much to learn from these incredible children whose hearts are "In Rhythm" with God's. Today I pray that we become more and more like Sam, I pray that we love unconditionally no matter if it is easy or not, I pray that we trust God without hesitation even when things don't make sense, and I pray that we ask God to make us pure in heart so that we are as close to the heart of God as we can be, I pray that today we become more and more like Sam Battle!
Please watch this link that the Battle family posted for the twins 3rd Birthday...it is precious!
Sam and Charlie 3rd Birthday Announcement
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Very hansome!!!!!!!!!!!!
ReplyDeleteI have followed this family's amazing story from the beginning. What an awesome testimony to the Grace and love of God. What a blessing it has been to be able to "walk down this road with them", albeit, never meeting, through the reach of the internet blog!
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