Wednesday, September 19, 2012

A time to dance



Hello
Thank you so much for leaving such warm and encouraging comments on my changing seasons posts. I know many of you told me you were going through some hard changes yourself right now and I hope these posts help to edify and encourage you in your hard choices. What seems to be a lifetime at the moment passes quickly and you find yourself in another season, stronger, wiser and praising God for His goodness.
Eccl. 3
For everything there is a season, and a time for every matter under heaven
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill and a time to heal;
a time to break down and a time to build up;
a time to weep and a time to laugh;
a time to mourn and a time to dance;
a time to cast away stones and a time to gather stones together;
a time to embrace and a time to refrain;
a time to seek and a time to lose;
a time to keep and a time to cast away;
a time to tear and a time to sew;
a time to keep silence and a time to speak;
a time to love and a time to hate;
a time for war and a time for
peace




This week it is our time for dancing... our time for laughter... 
our time for love.
We are celebrating the birth of the twins 15 years ago today. 
 My first grandchildren, yes I was blessed with two from the beginning. 

Zachary Scott and Luke Damon




It wasn't always a time of celebration...
born to my daughter at 26 weeks, so frail and tiny. 
Not knowing minute by minute if they would give up the fight, trusting our Heavenly Father for their fate.





As the days past, one hurdle after another... one more round of steroids to strengthen their under developed lungs but not enough,  pneumonia set in. It robbed Luke of the brain damage he escaped at birth, unlike his brother... it seemed they were still connected - tag teaming each other with every set back. So tiny that Luke's leg broke without notice to the careful watch of the NICU.



But they are fighters and against all statistics for little boys they grew and became stronger. Soon to come home and with them enough equipment to turn a nursery into a small NICU.






They came home, here. My daughter gave up her room and
we had the privilege to share the first 6 months of their lives.
It was scary at first, so much to learn... breathing machines, NG tubes, feeding machines, medications. My daughter got a crash course on nursing and she aced it. 
Little by little discovering the extent of the trauma that affected the life of these two boys... and change ours forever. 



Luke


Zachary

My daughter was trying to nurse them along with the ng tube (a small tube that goes through the nasal passage into the stomach which is hooked to a feeding machine that looks much like a IV unit) But they cried much of the time. Sleep didn't come easy in those days and still doesn't today. The family rallied and all took turns helping. 
The kids were in the middle of renovating a house they had bought on the next block behind our house. They thought it would be done before the twins birth but of course the twins came early. So Kerri's life for 6 months consisted of the small bedroom across from mine. Someone was always in the room.
Moving day finally arrived but I didn't have to go far to kiss their sweet little faces each morning... just down the path of my garden across the street and up the Branson pathway.



That first year was full of joy and pain. The biggest problem became projectile vomiting. Trying to keep the food in the boys was always a challenge. Eventually they would have a surgery called fudoplication but it turned out to be temporary. We went on with this puke fest so long that none of us can drink out of a red solo cup anymore. That surgery turned out to be horrific for the boys, it still makes me want to cry when I think of it... me with Luke and Kerri with Zach trying to comfort them and both of us praying...
Luke and I had a special bond, he took to me for some reason :)  so it became me with Luke and Kerri with Zach.
The boys also had a G-tube surgically placed so they could eat better, we were hoping this would be temporary. We prayed there trunk strength would develop so that they eventually could eat without feeling as though they were drowning... this turned out not to be.



During that first year the boys were tested and observed, in and out of the hospital. Trying different medications and learning, learning. One morning before my usual trip down the path I got a call, it was my daughter crying, the doctor had the boys test results and it wasn't good. They both have severe brain damage and as a result have Cerebral Palsy. Cerebral Palsy is a trauma to the brain at birth or in the first 3 years of life, which results in Neurological disorder from mild to severe. Luke and Zach are affected severely and their brain is also involved. Many CP victims still have full brain capacity as far as thinking and meeting their full capability.  They may not be able to walk or talk but they still may have a very high IQ. This is not the case for Luke or Zach, unfortunately they are not able to process and communicate so we are limited on just how involved their brain is. 
I remember the morning that I got the phone call as though it was yesterday. I put the phone down and went in the bathroom, wanting to loose it but knowing I couldn't. Wiping the tears from my eyes and praying for enough strength for both of us, I started down that garden path... not knowing how to fix this for my daughter. I entered the kitchen with Kerri at the table in tears, we held each other for a moment and then I knew it was me that had to give her some sort of hope, something to hold onto for at least this moment. My daughter was looking to me just as I looked to my mother for life's answers. Of course I couldn't make it all go away, like I wanted to but in those defining moments of life God makes His presence known, it is in those moments when God is God and He is all we have to cling to, knowing it isn't out of control. Knowing God wasn't surprised by this turn of events. Knowing He is my answer. What I said, I can't even tell you exactly but in the back of my head was my mother whispering in my ear. The strength she taught by her actions and the word she taught by faith, it was there when I needed it. 



And so that first year we all came together to celebrate the boys first year here on earth, here in our lives, here to bind us all together in love, as family.



Luke and I

My daughter was diligent in researching different methods and ways to better the boy's quality of life. She discovered a place in Florida that gave Hyperberic Oxygen Therapy with an premises physician. HBO promotes healing by flooding the brain with intense doses of oxygen. The HBO treatments were effective for the boys in small ways, eating, sleeping and a couple of times they actually said a word or two in the tank.
If anyone is interested in learning more about this treatment or more info on CP, my daughter's website is called 
The Branson Project



And now we are celebrating 15 years today. I can't tell you how fast those years have gone by. The boys have had more then their share of pain, surgeries and sickness. They also suffer from cortical blindness, which makes it hard for them to see straight ahead.  But they are my inspiration when it comes to the verse Paul writes, Being content in whatever circumstance we are in. 
The boys are quick to smile, sit for hours watching there favorite Diego show out of the side of there vision, belly laugh at silly sounds and always ready for a hug or kiss that puts a smile on their faces even though they are feeling poor. 



It has not been an easy road for my daughter and her loving husband. They both work side by side to make their family work together. Zach and Luke are included on all family outings and Kerri tries to give them normalcy. They are included in most everything... even to grandma's protests sometimes.



Therapies




Dancing











Mama runs a marathon... everyone runs a marathon...



Vacation









School sometimes gets tough...






We all love being silly...




Blues Boys




Dad and Luke







 God has something very special for these boys and I can't wait to see them walking in the new heaven and earth. I believe those that suffer in this age, will have much mercy in the next. God has a lot to say about suffering. 
I know the boys will have a lot to say and I will be listening...


We rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us Romans 5:3-5
Happy Birthday my Sweets!
Blessings
Rebecca

32 comments:

  1. Rebecca - What a precious story. It made me cry but only because I have been thru part of that situation, We had a darling grandson Landen, who passed away with cancer and we went thru so many trials and tribulations. But, it was worth everything for the 15 months we got to keep him here with us. And we know now that he is running and playing and probably giving the Lord fits. Ha.

    I am so proud of you as a family giving these sweet boys such a normal life. So many families don't have the capacity to do this. But you have and I know the Lord is looking down and watching your kindness and compassion and love for them. Your rewards will be great.

    Thank so much for this special post.

    Judy

    ReplyDelete
  2. What 2 precious boys and what a precious family you are. Love and blessings comes in so many unexpected ways- it is beyond comprehending- surely the ways of the Lord are so much higher then our thoughts could ever imagine!

    Happy Birthday Zach and Luke and Gods richest blessing on you and your family Rebecca!

    bee blessed
    mary

    ReplyDelete
  3. Happy Birthday to those precious boys....such a sweet story of love....thanks for sharing it!!

    ReplyDelete
  4. Rebecca,
    Thank you for sharing there story! Happy Birthday to your beautiful Grandchildren!
    xx
    Anne

    ReplyDelete
  5. Happy Birthday to Zach and Luke and blessings to all of the family. <3

    ReplyDelete
  6. What an amazing yet life affirming story......this should give all of us HOPE!!!!
    Thanks so much for sharing it.

    ReplyDelete
  7. Thank you so much for the touching story and beautiful pictures. I have a daughter, 12, with very severe cerebral palsy as well. What beautiful souls these children have!

    ReplyDelete
  8. ...and what an amazing daughter you have raised! this is just an awesome post! thank you!

    m ^..^

    ReplyDelete
  9. Oh Rebecca - what a beautiful testimony of love, strength, and determination! I was so touched and blessed by your words and photos this evening. I can empathize with the struggles and frustrations because I have two nephews with Duschene's muscular dystrophy. They are now 17 and 21, in electric wheelchairs, and have portable breathing tubes....but they still find joy in life and we love them dearly. We realized over the years that God never gives us anything that he won't be there to help us get through, and I can see that testimony in your daughter's eyes. Blessings to you all, Rebecca, and thank you so much for sharing this outpouring of love! ♥

    xoxo laurie

    ReplyDelete
  10. Thank you for sharing your story! Wow this brought tears to my eyes as I read the struggles and the happy times. God loves your family so much. thank you

    ReplyDelete
  11. I the family portrait you can see the love!
    God bless you all.

    ReplyDelete
  12. I hardly know what to say. What an incredible and beautiful family. I can't help feeling a connection to you. I lost my baby girl about sixteen years ago (not far from the same time as your grandsons were born) to an umbilical cord accident. Had she lived, it's possible she also would have had cerebral palsy. But ... I would've loved to know her ...

    I recently posted about that and how it changed the way I raised my two children born afterward. As you say, your life is changed forever ... http://www.angelabrackeen.com/2012/09/on-this-september-morning.html

    God bless your family, Angela

    ReplyDelete
  13. Such a sweet post with so much heartfelt emotion. It looks like your daughter's family is beautiful inside and out.

    Cindy Bee

    ReplyDelete
  14. R.E.,
    I'm sitting here crying reading your heart, but the tears are not sad ones. They're tears of joy in the glory that is our God. It's also in the family portrait you painted with your words.
    Your Kerri is a special woman raised by a special woman. She could have wrapped her boys in saran wrap and kept them isolated from the dangers the world holds, but instead chose to fight right along side these beautiful boys and give them the Word instead.
    Yes God has special plans for them and they're being fulfilled in the testimony to faith your family has day in and day out.
    My goodness, just think of all the changes in the treatment for these micro babies that have come about in just the past 15 years. Researchers may want to take all the glory for the amazing discoveries that have taken place, but you and I know...the glory is His and in His perfect plan for all of us.
    Happy birthday boys. Not only were you given life as a gift, but the most precious family to share it with...the perfect birthday gift of all.
    God bless you R.E. Bless you for your heart, your love, and for turning tragedy into triumph with your voice and example.
    XOXO forever,
    Debbie

    ReplyDelete
  15. I am so touched and moved this morning! You have such a beautiful family. Rebecca, God has truly blessed there is no doubt. I am in awe this morning as I read this at God's love, mercy and grace! I honestly feel so many words here bubbling up inside of me but can't seem to get then out of my mouth! My tears this morning are of joy! Thank you for sharing your life! Hugs and blessings, Cindy

    ReplyDelete
  16. I love that you are sharing their story! I work with children with special needs and feel very blessed to take a little part in their lives. It is obvious, Luke and Zach are very happy (and very lucky to have such a wonderful grandma!). hugs! karen....

    ReplyDelete
  17. I have worked with special needs children & it can be extremely rewarding (& taxing at times too.) With certain children, I say God put them in the right family. Yours is one of those. Those boys are blessed to be in a family that gives them every chance to be as successful as they possibly can. Wishing you and yours every wonderful thing and many smiles.
    JoeyLea

    ReplyDelete
  18. I did not know you before, but now i have tears in my eyes.........what a wonderful family, what a great life with this wonderful boys!!! I´m grandmother of 2 year old twin boys.........one is named Luke. Thank you sooooooo much for sharing.......send you and your family all my love,

    Hugs Jade

    ReplyDelete
  19. Oh, I forgot:

    HAPPY BIRTHDAY and a wonderful time for Luke and Zach!!!!!!

    With love, Jade

    ReplyDelete
  20. Girlfriend...how you bless me. How you MUST bless all who come this way.

    What I know this very second is that the heavenly reward for these two boys and for all who have struggled to keep it together for their sake, will one day be GRAND. We serve a just, loving, gracious and giving Lord. He has noticed everything done in the name of love and it WILL BE remembered and honored in his time. Happy Birthday! Happy Birthday!

    I knew I was directed here tonight for a reason. I snapped right out of my season of WOE IS ME attitude, put my big girl pants on and whispered a big prayer of GRATEFULNESS to the ONE who gave life to me.

    Bless you. Thank you. Love, Rebecca

    ReplyDelete
  21. What a lovely family! Your whole family will be blessed on the other side! Those boys look as happy as they can be! God knew what he was doing when he blessed your family with those angels from on high! What a lovely journey, that's for taking us along!Happy Birthday boys!
    tot

    ReplyDelete
  22. Your family is truly lovely and I learned much reading this, and seeing all the photos including ones that show lots of laughter and joy. God bless you all.

    ReplyDelete
  23. Happy Birthday to your sweethearts, Rebecca. You have a beautiful family. I love your faith.May it always be strong. Smiles to all of you, Susie

    ReplyDelete
  24. Dearest Rebecca,
    this is a post so filled with love and also pain and sorrow.
    I have alwayes when seing the photoes of your precious twinns ,though about how much strengh it takes firstly for your daughter and son in law,and their 2 other kids, but also for you,my dear and all your family, to live a life with what it takes to find happiness for the boyes and give them as much beautiful experiences as possible, -and being able to have a life "normal" life ,one self,too. You and your family, are very special, my friend, truly loving and caring where others would not have the strengh to fight all that follows with kids in such difficult circumstances. It filles my heart with joy and sorrow, to see the love and also pain in both parents eyes.
    Happy belated birthday sweet friend-
    Blessings to you all.
    Dorthe

    ReplyDelete
  25. Dear Rebecca
    Thank you for this awesome gift, it has been a blessing to see and know the journey of the boys and their family!
    Br Kevin
    Friar of the Sick Poor of LA




    ReplyDelete
  26. What a beautiful beautiful post/ What a lovely family you have. Your daughter is gorgeous! I can so relate to what her life is like. I had twins, turning 13 in October. Wyatt is fine and Gage has severe CP. Does your daughter have a blog? I am go to go follow you now. Your blog is beautiful!

    ReplyDelete
  27. My daughter, Sandy, led me to your post and I'm so glad. I see so much love in the eyes of the whole family, and the boys are truly blessed by your loving care. Sandy and her husband & 3 other children love and care beautifully for our sweet Gage...even their 3 little dogs seem to especially love Gage and look out for him. Thank you for sharing your inspiring & heart warming story.

    ReplyDelete
  28. Very very touched by your blog, don't know how I got here. My oldest son committed suicide at age 26. I have two other sons and three grandchildren. We has some very hard times, some wonderful times. I am in awe of your daughter, her family, and you.

    ReplyDelete
  29. what an amazing and beautiful family! thank you for sharing your story. i especially loved the photos with the horses and the one of them dressed in halloween costumes in the leaves. i found your blog from a pinterest pin of some mannequins you used at an event you did. God bless you and your family!

    ReplyDelete
  30. Just finding this post, and so moved by you and your daughter, those PRECIOUS boys, and the very evident strength that God has given each of you.
    I know they are a double blessing to you and your family and friends, but know too that they are now a blessing to me. Happy Birthday boys!
    Hugs,
    Doni

    ReplyDelete
  31. Hi - what a beautiful post, beautiful family and testiment of love unconditional. We all think we have problems and hardship - until we see real problems and hardships. Your family certainly turned hardship into love and closeness. Thanks so much for this post. Today I was complaining about having to step over wires in the kitchen because that's the only way we have some power (after the storm) in the house via the generator. It's no problem - I am reminded that these inconveniences are nothing. I am praying for the rest of the people that have real hardship after Sandy. God bless you and your family.

    Linda
    http://www.thecolorfulbee.com

    ReplyDelete
  32. Very touching and lovely story. This blog is totally unique from the others. Deeply touched and now I am able to understand the troubles occur in life. Nowadays for promoting anything in the market, the best way is the advertising medium. We are a leading brand in translation services and a reputed event management company

    ReplyDelete

I love it when you leave a comment!
Your friendship and visits mean very much to me.