I Am Proud To Be A CP Momma

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If you told me five years ago I would have the ability to dress, change and clean g-tubes, be trained in specific therapeutic stretches, master the in’s and out’s of a substantial amount of adapted equipment, and be well versed in “doctor talk”; I most certainly would never believe you.

I have learned this, and so much more, from becoming a Momma to child with Cerebral Palsy.

What does being a CP Momma (or Daddy) mean? It means you are part of a journey you never seen yourself taking, but soon realized you could never imagine yourself anywhere else. It means you know the definitions of hypertonic and hypotonic tone and how it applies to your child. It means struggling to watch your child overcome so many obstacles, yet continuing to be their biggest cheerleaders. It means using your voice to advocate awareness, seek equality, and fight for funding to get the specialized equipment your child desperately needs. It means you learned early on, that giving up was never an option and holding onto hope was the only option. It also means you’ve fallen apart when days seemed too much to take, cried in silence and felt anger and frustration; picked yourself up, dried your tears and kept going.

You are living a life no one outside of it will ever truly understand. Only those that can, are other CP Parents. They become your tribe and together you become warriors fighting this battle called Cerebral Palsy.

Our children become our heroes. We get inspiration from their courage. When we witness our child overcome challenges and watch that child flourish in ways never thought possible, that is what strengthens us to keep moving forward. They need our strength, just as much as we need their courage. Together we are a team trying to win this fight!

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The Fear No Special Needs Parent Talks About….Ever!

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With the sudden passing of our dear friends’ child; parents also to a child with Cerebral Palsy, I can’t help but be reminded of the fear we parents to children with medical fragility battle daily.  You might think it odd to have death on your mind everyday. For parents like us, it’s not something we dwell on, but it is always at the back of our minds.  We know all too well how the impact a virus, lung infection, cold, or some other bogus health factor could jeopardize our children’s fate. This doesn’t mean we go around like stress bags. We suffer in silence. In fact, we are probably the most upbeat, positive people you have ever met.

We have been taught a hard truth from the moment our child struggled for their first breath, the delicate nature of life. We have learned to value each day we have with them and battle the thought of ever having to live one moment without them. Each night I tuck my daughter into bed, I kiss her forehead and pray to God I get another day.

We celebrate the great days! Especially if those great days spread into a week, or better yet…months! We are parents who have walked the line so many times with our kids, we have learned to live life to the fullest with them, the best way we can; enjoying and appreciating  the simplest things like snuggles in bed or cuddled up with their favorite story. We live for today and always have hope for tomorrow. 

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