Redefining spina bifida

When I first heard the words spina bifida I had no idea what they meant. I knew I didnt want to hear them, and I knew they were words that packed a powerful meaning. I first heard these words on September 24, 2009. I heard them said as the condition that my baby boy would be born with.

Spina Bifida----- myelomengingocele in our case. An open neural tube defect.

They were words that I couldn't really understand at the time. The dr. explained it as best he could, even used a baby doll as a illustration... drew pictures... showed us medical books. Still I didn't quite understand. I went home and googled the words.... Most research left me in tears. It left me hurt and it left me feeling scared and helpless. Praise the Lord in my research I found a community of mothers whose children also had spina bifida. The first I remember meeting was Emily. She had a son whose name was also Carson.... he was just a few months old at the time.... he was adorable... and she was sweet and so very helpful. I met other mothers and read blogs about children who were miraculous... children who were living with spina bifida. They were happy, and adorable children who were doing everything that other children their age were doing. I remember reading at the time about one little boy who was very active in wheelchair sports. Very active and very good. I remember reading about a little girl who just took her first steps in a walker. I met friends. I met help and I met comfort. I learned that though there would be lots of new words added to my vocabulary (ex. hydrocephalus, kidney reflux, lesion level, chiari malformation, etc. ) everything was going to be ok. I learned that spina bifida was being redefined. It was not what google said. Kids as young as 2 days old were bringing an entirely new light  and meaning to the words.
 

Strength
Courage
Endurance
Fear
Patience
Love
Trust
Hope

On November 11, I  met my Carson. As I placed my hand in his I knew confirmation of all these words. Especially strength and even more so love. These words have themselves gained a new meaning in my life.

From a very young age Carson could put up a fight.

And he loves to flex his "muscles"

Him redefining love is pretty obvious. Everyday I take  new photos of this LOVE.

 Because I can't help it. He brings so much joy and so much laughter to my life. There are so many moments I just do not want to forget. When I see him and I see his happy face and hear that belly laugh I do not think about spina bifida the same.

So few people know about spina bifida. It is extremely sad. What is even sadder is the false information that is given online and given by doctors to those who  are expecting a child with spina bifida. Believe it or not, many women are encouraged to abort the baby. Spina bifida is among the conditions that is considered medically necessary even. They consider the quality of life to be hindered and therefore disregard the sanctity of life and abort.

SO HEARTBREAKING!

But we can do something. We must do something. Please help us redefine spina bifida. Please help us spread awareness about what spina bifida really is. Support Carson and support his friends. You can purchase a t-shirt, tote bag, even a hoodie.Go to http://urbanupcycling.blogspot.com/ and place your order. FAST! You have till Tuesday February 1.

A blessing

This past weekend I had the privilege of attending our church's annual Ladies retreat... what a blessing it is to get to spend time with ladies in fellowship and be challenged together in our Christian walk. Challenged and encouraged I was. 

 The theme for our retreat was Fanning the Flames. It references how we must fan the flame of our relationship with the Lord.... I needed this retreat (badly)

You see the first thing I learned is in regards to seeing the Lord in my life I have Glaucoma.

Glaucoma is an eye disorder in which the optic nerve suffers damage, permanently impacting vision in the affected eye(s) and progressing to complete blindness if untreated. It is often, but not always, associated with increased pressure of the fluid in the eye. Because of the increased pressure in life I have suffered vision damage and am not seeing the Lord in my life as I should.

The speaker reminded us that God is always present in our lives. He is always with us. Hebrews 28:20
"...and, lo, I am with you always, even unto the end of the world. Amen."  It is God's promise.... and we know He keeps his promises. But why are only a few occurrences in my life when I can say that I have truly seen the Lord? Why is it that I often question his presence, and ask Lord, where are you in this tough situation? It is MY vision problem. I, personally, fail to see him as a result of my own lack of awareness.
He is always there.... just as He promised... however, I am rarely where I need to be spiritually in order to see Him.

I have often heard this illustration given in church, and it relates so well.

- A couple who had been married for several years is traveling down a highway together in a pickup truck. The man is driving, the wife is sitting in the passenger seat. After several minutes, the wife angrily interrupts the silence. "What happened to us?" She asks. "Marriage and life just seems as if it has pulled us apart. We used to ride all snuggled up together in this truck. We were so much closer. Now... look at the space between us."
Without hesitation the man replys, "I didn't move an inch. Dear, you are the one that scooted over."

The Lord remains in our life constant. Never moving, never leaving, and never ceasing to work. The problem lies in us... we scoot over. We let routine, or struggles get between us. We don't pray, or spend time in His word as we should. We don't seek Him and we fail to see Him.

The last part of the session was about activation. Service. We all know we are commanded to serve the Lord and this of course brings us closer to Him. Yet, we come up with excuses.
I'm too old/ too young...... I'm not married/I am married..... I don't have the education/I'm too educated.....My background is not desirable... and of course the most often given.... I'm too busy. Our speaker used Exodus 35: 22-29 as her text. These verses speak of wise women who worked with their hands and provided the fabric used in the tabernacle. They had willing hearts, and they gave their own precious resources. As an illustration to giving of our own precious resources she mentioned our children. What is more precious to our hearts than our own children. Her statement was, "What if the Lord asked your child to serve as a missionary. Would you be willing to let them go?" My answer of course was "Yes" If God called Carson to be a missionary, oh how happy we would be, and proud. As my mind wondered on this thought..... Carson a missionary..... telling others about Christ..... serving Him with His life.... tears filled my eyes and my heart was overhwhelmingly prodded as this thought smacked me in the face.

God has called Carson to serve Him with His life, and to be a testimony for Him. He gave my child a disability in order to show His strength, and His goodness. It is a opportunity for us to praise Him..... yet, I am  not always willing to allow Carson, my son, my baby to do so. I get upset that He must struggle, I cry that He isn't like other children his age. Spina Bifida may be the exact thing that God gave our family as a means of service to Him, and I have two choices.

I will either allow the Lord to work, and be praised, pointing others to Him.

Or I refuse, gripe and complain, and hinder the Lord's purpose.

 Yes, this weekend I was challenged.... and boy, I am glad. My brother reminded me of this last night.

 ^{Romans 8:28 "}And we know that all things work together for good to them that love God, to them who are the called according to his purpose. "

New year equals new opportunities

We have been without home internet and so I am way behind on sharing a few things with you.

On December 30 we picked up Carson's wheelchair !!!! FULLY PAID FOR BY INSURANCE!!!!!!!

Because of weather and Carson being sick we have'nt much opportunity for use. Last night we took it with us to church and let Carson show it off.... He did! He is having a harder time "getting" the use of this chair because the wheels are different from the chair we had to practice in. But, I know soon enough he will be racing around.

Receiving this wheelchair has honestly caused a battle within my heart. I am so excited we have it, and so excited to see Carson in it and enjoying it, but I also cry at the fact we have one... the fact that we need one.

My good friend Joanna has a song that plays on her blog just about everytime I visit it ( I think it's intentional) The lyrics to the song just make my throat tighten and bring tears to my eyes. The song talks about how we all have pain we face, hard times, struggles, and we cannot understand them. We cannot see the bigger picture. However, the Lord does and the Lord has good promised for those who love Him..... We just have to wait for it. Then yesterday at church our choir sang, "Isn't the love of Jesus something wonderful?" Oh it is, and oh how great and loving and good God is to us. Trials do come, but in time we see the goodness and the garce of God.

My dad had a series of massive strokes in 2006 which left him brain-damaged and paralyzed. It was a mountain we thought we could never climb, but almost five years later I see it differently and I see all the wonderful blessings that came about through that trial, including Bob and I falling in love. Just this past week we celebrated our 3rd wedding anniversary.

This past year my sister in law miscarried her first child.... and now her and I both are expecting healthy baby boys in April .

Blessings surround us... The Lord surrounds us with His grace, His love, and His purpose.

One last blessing that I am overjoyed at sharing is our friend Greyson is beginning to walk with help from a gait trainer!!!!! This was a video that they shared on Christmas. A Christmas present which has filled my heart with hope and praise. Greyson's spina bifida diagnoses is very similar to Carson's. They have worked so hard, and Greyson is conquering and redefining spina bifida with every step he takes.

Greyson's gift

Isn't God good??? Isn't it amazing to see Him working in the lives of our children. I can't wait to see what wonderful things will happen this year.