Monday, March 25, 2013

Cerebral Palsy Awareness Day

In the Spring of 1997, I was a young expectant mommy eager to meet my three babies and yet desperate for them to stay put until closer to their due date. Even though I was hospitalized and had not moved even a toe out of bed in weeks, my thoughts of the future were bright, hopeful and honestly more concerned about whether the kids would have Dad's dark straight hair or my light wavy hair than whether or not they would have Cerebral Palsy.

I was not naive, or ignorant of the risks. I heard the doctors talking. I knew what they were saying about the chances of these three making it. But even with the risks, even knowing that long-term disabilities could be on the horizon, the term Cerebral Palsy did not mean much to me.

Almost 16 years since their birth, I do know. Almost 16 years later, my world has been forever changed. And almost 16 years later, I want to educate others, I want to share, I want to help. I want to give you information and more than that I want to give you some faces that will help you understand the need for more knowledge, more research, more people committed to helping find hope for families affected by Cerebral Palsy every single day.







For example, did you know:

-That Cerebral Palsy is the most common motor disability in children?? It affects more than 800,000 Americans -- 1 in 303 children; and more than 17,000,000 people worldwide. Of course, in my house, it affects 2 out of 4 children. One of the two, Benjamin, can not walk at all, using a power wheelchair to navigate his world; the other, Mason, works his tail feathers off using crutches to move. According to a gait study, he uses more energy walking across the house than you will use walking UPSTAIRS all day long! He works his tail feathers off.





-That currently there is no known cure for Cerebral Palsy? There are surgeries that can help mitigate the damage being done by a brain that is sending all the wrong signals but there is no cure. When Benjamin's brain constantly tells his leg muscles to fire but does not tell them how to move, he becomes tight, rigid. This tightness, called spasticity, causes bone deformities, muscle contractures that become painful and make it difficult to clean his hands, his legs, whatever extremity is being affected. Surgeries can loosen that -- though sometimes only temporarily. But surgery can not fix it. Loosening the tendons that have become so tight his wrist is deformed -- for example -- does not mean he will gain use of that wrist or hand at all. As a matter of fact, my dear Benjamin had this surgery in December and now the wrist deformity is gone. The wrist is straight. But he can no longer open his hand. The contractures in his fingers are worse than before.




-In more than 80 percent of cases, the cause is unknown? This is not really true for us -- because the boys were triplets and born extremely early (almost 12 weeks early), the white blood vessels in their head burst in the area that controls motor skills. What we do not know is why it happened to them and their sister, also born that early is fine.

-CP is a broad group of disorders which disrupt a person's ability to move, sit, stand, walk, talk and use their hands?? The severity varies in each case -- and the severity varies in my own family. Benjamin is completely dependent for his care. He requires a power wheelchair and needs assistance for daily life skills. Mason on the other hand is fairly independent. He works hard to do all he can for himself and pushes his limits every day.



-75% of individuals with CP also have one or more additional developmental disabilities? These can include epilepsy, intellectual disability, autism, hearing loss and deafness, vision impairment and blindness?  While Benjamin has struggled with vision issues, three surgeries to correct strabismus and a continued depth-perception issue, we are fortunate that otherwise, my boys' impairments are limited to motor issues.


-Cerebral palsy is not contagious. The injury to the brain causing the disability occurred at birth or shortly after, you can not "catch" it.




-I desperately want to type that CP is also not degenerative. It is not degenerative. But today, I am struggling with that information. When the boys were preschoolers, I clung to it. I quoted it. I memorized it. I used it as a coping skill beyond all coping skills. IF we could learn what CP looked like for my boys -- wheelchairs, crutches, etc -- then we could use all our energy to help them cope, to help them succeed within their confines, to help them reach their very best.

Oh, please don't get me wrong. I am still on that mission. But I have learned that just because something isn't degenerative, doesn't mean it doesn't get worse. The damage does not change. The part of their brain that was affected at birth is stable. Not changing. But, oh, and this is big. As they grow, the effect that damage has on their bodies does get worse. The taller Benjamin has gotten, the more curve his spine has formed due to gravity and his muscle issues from his CP. Hence the big surgery we have looming.


As Mason gets taller, his body wants to crouch to lower his center of gravity and help him keep his balance. He has to fight this urge with every single step. Every single step. As if his single steps were not already enough of a challenge.

Growing bones and tight muscles do not offer a good combination. We have spent the last four years fighting the effects, working against the clock to save function, to help maintain independence for Mason and prevent pain for both. It is hard. It is overwhelming. And it makes me mad that while CP is not "degenerative", it does not plateau and leave my boys alone.

What can you do to help? (Cause I know you are asking??)

There are big things that need to happen -- Cerebral Palsy needs to be a line item in the NIH budget. It isn't.  Disorders affecting a lot less children has a line item for funding research, searching for the why? and looking for a cure. Cerebral Palsy does not. If you can, contact your legislators. Urge them. Wade, the kids and I had the privilege of speaking to legislators on Capital Hill two years ago. We urged. We pleaded. And we sat through a House of Representatives session where the congressman on the floor was discussing Cystic Fibrosis. Except he wasn't. He was talking about a child with cerebral palsy while urging the  representatives to fund research for cystic fibrosis. Sigh. Clearly, we need more education. We need more resources. We need people to care.

Be a friend.  Embrace the children and adults in your world with cerebral palsy. I assure you that if your children see you befriending your neighbor in a wheelchair, they will not think TWICE before befriending the student in their school who needs a wheelchair to get around.

Love the Mamas. Ok, this is self-serving. It is. But some days the therapies, the doctor appointments, the pending surgeries are just too much to handle. We do not want you on eggshells.  We just need you to be our friend. To love us on our hard days. To not judge us in the seasons when we can barely think of anything but an upcoming surgery. To stand with us with in our exhaustion. And to bring jelly beans when all else fails. Love the mamas.

And perhaps, the thing I want you to know most of all is this:

I have FOUR wonderful children. I have no doubt that God placed all four on earth for a big purpose. I have no doubt that Cerebral Palsy is part of that. That Benjamin's ability to roll into a room and command an audience is part of that plan. That Mason's ability to use his struggles to point people to Jesus is a part of that plan. That the ability Cate and Claire have to love others with special needs is part of that plan!



God is good. God is big. And God LOVES my boys -- and girls.

So, yes, Cerebral Palsy can make me scream, cry and uh, eat jelly beans, but we are blessed. Beyond blessed really.



Wednesday, March 20, 2013

Update

Our dear Kathy is recovering beautifully. The surgeons were pleased and we are anxious to see our friend.

Thank you for praying!

Sunday, March 17, 2013

A gift. An absolute gift.

I first met Kathy when she was Mama Duck to Mason's Ugly in Honk, Jr in the Spring of 2012. By the end of the production, we were all in love with this charming, talented, hilarious woman and knew the friendship formed would be long-lived.




Recently, our dear friend, has been diagnosed with a brain tumor. A tumor that though not cancerous, is  causing damage, pain and a myriad of other issues. Growther -- as the amazing Kathy Chick named it -- has to be removed. Surgery is scheduled for this coming Tuesday.





Kathy held a concert last night. Her "Farewell to Growther Tour" she called it. She sang, she played, she led the sanctuary full of people in the sweetest, most sincere worship time I have experienced in a long long time. And while she can sing like an angel; while she can play the piano amazingly; and is an inspiring song-writer; last night, Kathy did what she really does best of all, she took her distress, her challenge and used it to encourage us all. She ministered to our hearts. She comforted our hearts. And above all she pointed us to the ONE that can meet every need from brain tumor to spine surgery.




During one of her original songs, she had a flash mob-esque group of students join her -- teenagers from our Moezart theater family. The voices merging together were so beautiful, so comforting. Worship in a pure pure form. (And yes, my three oldest were part of the "mob".)






Later in the evening, she sang another song that pressed my heart. The song referenced Philippians 4: 8-9:

"Finally, brothers, whatever is true, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me -- practice these things, and the God of peace will be with you."

And because she was LIVING that right in front of us -- she was living a dwelling on the lovely with her music, with her gift of worship. Because she was focused on the peace of God rather than the fear, the anger, the unknown of what is to come she reminded me. She reminded me of something my head knows and yet, my heart had forgotten. She reminded me to focus on the lovely, the commendable, the excellent NOT the ugly, scary and fear-filled.





And so, I will honor this beautiful woman by following her example, by focusing on the lovely...





The pure....




Whatever is commendable....






I will honor her by practicing daily how to focus on the these things -- not the ugly.







I will follow her beautiful example. I will work harder at laying aside the dark thoughts, the fear-based thinking that can consume and destroy. I will be intentional in my thanks-giving; in my praise-singing; in my God-honoring.

And will praise the ONE that promises that His peace will fill me as a result.

Thank you, Kathy. You are an absolute gift. So thankful that God placed you in our lives. We will be on our knees Tuesday, asking God for complete riddance of Growther and complete healing for you -- a gift that is pure, lovely, and worthy of praise!

Monday, March 11, 2013

A deep tap root of faith.

It is a horrible constant struggle. That point of volleying back and forth in the horrible place between needing to scream for the One who can to pull me from the pit of my despair and yet, not wanting to ask for His help at all because hanging on to my anger that my son has to endure one more thing is a huge part of my not-coping-too-well-skills today.

When I close my eyes, I know the love of a Savior that promises to hide me in the shadow of His wings (Psalm 17:8), a promise that has physically comforted me for years. I know, also that He is capable of healing my son with a word, of preventing Benjamin from needing this surgery entirely.

And so I struggle. I cry out. I plead. And I struggle with the why. Oh, I so struggle with the why.

And then I force myself to be still -- a mandate from my will even when my heart is fighting it. Fighting the need to sit and read my Bible, poring over the scriptures that are God-breathed to teach, to reprimand, to grow.  And so I did this morning.




And today, my friends, my reading was from Matthew 13 and I was struck with the absolute perfect timing. Timing that forced me to lay aside my whining for a moment to bask in the truth and lesson I needed to hear loud and clear this morning:



"A farmer when out to sow his seed. As he was scattering the seed, some fell along the path, and the birds came and ate it up. Some fell on rocky places, where it did not have much soil. It sprang up quickly because the soil was shallow. But when the sun came up, the plants were scorched, and they withered because they had no root. Other seed fell among thorns, which grew up and choked the plants. Still other seed fell on good soil, where it produced a crop -- a hundred, sixty or thirty times what was sown.  (Matthew 13:3-9)

"When anyone hears the message about the kingdom and does not understand it, the evil one comes and snatches away what was sown in their heart. This is the seed sown along the path. The seed falling on rocky ground refers to someone who hears the words and at once receives it with joy. But since they have no root, they last only a short time. When trouble or persecution comes because of the word, they quickly fall away. The seed falling among the thorns refers to someone who hears the word, but the worries of this life and the deceitfulness of wealth choke the word, making it unfruitful. But the seed falling on good soil refers to someone who hears the word and understands it. This is the one who produces a crop, yielding a hundred, sixty or thirty times what was sown." (Matthew 13:19-23)



Years ago, we were living in Alabama when a snow/ice storm came through. The trees became bowed under the weight of the ice, bending down and almost touching the ground. At that time, we had never lived north of the Mason-Dixon and wondered about trees in the northern areas that received much more snow than our little Alabama dusting. Our friend from Michigan assured us that trees do not suffer that problem up north. He explained that the tap root of trees in the north runs deep in order to support them through the rough winter storms.

Today as I studied Matthew 13, I was reminded of the snow-damaged trees from way back. Of trees in my beloved South that lack a deep tap root. And not for the first time, I was grateful for a tap root of faith that runs deep. The trees in northern climates do not grow a deep tap root because of some knowledge they have as a sapling. No. The trees face adversity from the beginning. They deal with harsh temperatures, winter storms and are forced to sink their tap root deeper and deeper to provide the strength to stand tall in the midst of the trial.





My tap root runs deep in much the same way. And because God has grown my faith to run deep, to stand firm, to be strong, my faith will not be scorched by the heat of this adversity, of this pending surgery, of this heart-ache that my child has to endure one more thing. My faith is not contingent on "feeling good" or being happy. My faith has a root that runs deep. My faith knows that Jesus died on the cross so that in eternity, my Benjamin will be fully healed. He won't need surgery. He won't need a wheelchair. Jesus healed here on earth so that we might imagine the grandeur of Heaven with no sickness, no infirmities, no pain.

And in the meantime, I will cry out and ask Him to cover me in the hiding place of His wings. Until my attitude is adjusted. Until my self-pity has receded and I am once again, fit company for the world.