a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Wednesday, March 9, 2011

Dear Cerebral Palsy

March is your month. Cerebral Palsy Awareness Month. During this month, most state your facts and statistics to increase one’s knowledge of who you are and what you look like. Some may choose to bring to light your darker side, the hardship you cause and the pain you inflict on innocent bodies while others may choose to spread what a fortunate circumstance you have been to the lives of those who know you personally. I choose to take the bad with the good because without one there is not the other. No matter how I view you on a daily basis, no matter how angry I am to see your hindering ways within my daughter, or how joyful I am of her triumphs over you, I am very aware of you Cerebral Palsy... more aware of you today than I ever hoped to be.

It’s been 3 years now since you felt the need to make yourself known and grace my innocent daughter with your life long presence. I’ll hand it to you - you had us sitting on rock bottom after our baby’s diagnosis but only for a little while as this small family of three was bound and determined to not be beaten. More importantly, the child you chose to inflict with global delays, right-sided weakness and spastic muscles has been thriving and kicking your butt ever since she met you.

Thanks to you, it’s taken a team of professionals to help Rob and I raise this girl of ours. We could have never begun this unforeseen journey on our own. We count this as part of your good, just one of the many blessings in our lives. Because of you, we have met the most sincere and compassionate therapists, doctors, teachers and everyday strangers who go out of their way to make life as normal as possible for our daughter. She has an additional 5 doctors over the child who lives a life free of you, not to mention the 6 therapists that manipulate and train her mind and body to conquer you. We are and will be forever indebted to them all.

Cerebral Palsy, because you have stolen some of the simple pleasures from Rob and I that come along with raising a typical child, you have in turn given us intangible things that are far more valuable and greater than us. Among those things, we learned very quickly to document life and appreciate movement. I will forever hold vivid memories of the first time my daughter was able to look at me clearly with both eyes and smile from behind the teeniest pair of pink glasses. I recall the first time she rolled from front to back and who was with me at the time it happened. I remember her first unassisted sit with Rob seated behind her ready to catch her fall. I remember her promising first reaches for an object with her right hand during one of her first OT sessions at just 7 months old. I’ll never forget her first claps that were captured in Christmas pictures just months after her first birthday. I remember the nerve-racking ride home from her eye surgery and witnessing the first time she looked to her right with both eyes finally aligned. I can still see her first belly creeps across the floor and her first haphazard steps with her walker when I stop to remember and I’ll never, ever forget her very first independent steps. Every goal and milestone met will be etched in my memory so long as I live as each one had to be taught and practiced over and over again until successfully mastered. In this house, dancing and excessive cheering is not reserved for just sporting events and birthday parties but rather for the tiny miracles that have happen within our own living room.

Cerebral Palsy, you have also taught us to seek the silver lining in every situation. You play an unfair game with the muscles in her little body, including those that control her eyes. However, those glasses that she so sweetly wears on her face are there because she can see, not because she can’t. The orthotic on her right foot that seems cumbersome at times and often limiting is only a daily reminder that we have a daughter who has been blessed with the gift of mobility. Her speech delays have taught us to listen with our eyes and hearts as her actions often speak louder than her utterances and unclear words. The perspective you have given us of this life will always lead us to the silver linings, no matter what.

Because of your unexpected lessons, you have bonded this tiny family with love and faith and have provided us with the indescribable feeling of pure and absolute joy. Some days I dislike you and I feel weakened by you, but most days you fill my eyes with tears of happiness and pride for the little girl you can’t slow down. Your challenging ways have made me a stronger woman, a better mother, and a more open-minded individual. You have shaped the character of my child just so, making her a tender yet hard working warrior who always wears a smile despite your presence. I know you’re here to stay because you have no cure, but don’t get too excited. My daughter has you, Cerebral Palsy - but I assure you, you do not have her.


Sincerely,

Oia's Mommy
One very proud CP momma

26 comments:

  1. Hi Oia
    My name is Jenna and I came across your site. u are a brave courageous fighter and a real hero. You are full of life, spunk, joy, happiness, love, smiles, courage, and fight. I was born with a rare life threatening disease. I love it when people sign my guestbook or email me.
    http://wwww.miraclechamp.webs.com

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  2. Wow Mo, you nailed this one!
    One of my favourite posts, ever, I think! And you even topped it all off with a picture of the little warrior herself. Beautiful!

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  3. We are so blessed to know you! I love the strength and courage that you teach the rest of us in every writing. You remind those that are blessed with children to appreciate the little things and not to "sweat the small stuff". We love you Mrs, Teaster!

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  4. This is an amazing post with a beautiful picture of Oia. Thank you for sharing this.

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  5. A very beautiful piece! You are talented in so many ways Mo! We miss you guys very much!

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  6. Tears of joy and total understanding my friend! I just loved this you should totally frame that for your wall!

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  7. Thanks Mo. What a great post and what an inspiration you and your little CP warrior are!

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  8. I was in tears when I read this and feel the same way about progeria. The way that you captured the mix of emotions that come with being a parent of a child with special needs child is amazing. This should be published!

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  9. What a lovely post, Mo, and what a lovely daughter

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  10. Look at how much Oia has grown and she's so beautiful. Just like her mom! We miss you!

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  11. Thanks for sharing.
    I love the last line "my daughter has you, CP, but... you do not have her".
    Well said.
    Liseli

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  12. I love, love, love this. Do you care if I share it on kidz, crediting you and linking back to your blog of course? Let me know, girl. Thanks! kidzorg.blogspot@gmail.com ~Tara

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  13. I love it. You are awesome. And so is Oia. There is little else to say because really, you said it. I will definitely be sharing your post via link on twitter, et all.

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  14. Just beautiful. You put that all so well.

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  15. This is amazing, Mo. Well said.

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  16. Monica... you are such a good writer! Loved the article and ALWAYS appreciate your positive attitude =D What a blessing you are to others! Praying all is well with you pregnancy and you're feeling great!

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  17. Monica - may I share your article on Facebook to mark CP Awareness week?

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  18. Zubin, you may share this post via Facebook. Thanks for the interest.

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  19. LOVE this!! Mind if I share your post on my own blog? http://hydranjourney.blogspot.com

    My own 'lil man has hydranencephaly w/CP... among other things. We have some amazing little miracles in our lives, don't we?

    Thanks for sharing yours with the world!

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  20. Ali - share away. Thanks for stopping by.

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  21. can i share this i am a 19 year old with mild CP

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  22. AZ Chapman - you certainly can. Thanks for asking!

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  23. will do come visit my blog sometime

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  24. Love it. You captured what I feel every day. My daughter is a 9 year old sassy pants with spastic diplegia. I see that your daughter recently had a hamstring release and heel cord lengthening. My daughter is having the same as well as a tendon transfer and tibial osteotomy. Have you been pleased with the results?

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  25. Julee, We have been very pleased with her surgery. Feel free to email me if you would like to discuss this more... Good luck with your daughter's procedures.

    Teastersinva@gmail.com

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  26. I just had tears in my eyes, i am father of son with hemiplegic CP. well yes its true ..may God bless all our children

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