So We Have Our Days

I’m sure every parent has their days where they are strung out, at their wits end, can hardly hold in the frustration that comes when raising children. The constant day-in and day-out of caring for and being so closely entwined with another individual is bound to cause friction.

So when I have a day where I’m at my wits end I very quickly remind myself I’m not alone. I’m not. There are millions of other parents who have dealt with this, are dealing with this and will deal with this in the future.  Get it together already!

Except, not really. In many ways I am alone.

You see currently there are 17 million individuals on this planet with Cerebral Palsy out of over 7 billion. 1 out of 500 babies is diagnosed with CP. It the most common physical disability in childhood. Common.

Except it’s anything but common. It is so incredibly isolating for both the child, and the family as entire unit.

Between therapy sessions scheduled at school or home, and the innumerable moments of poor mobility, poor annunciation, failing stamina, unknown pains and at times diminishing spirit, I do not fail to see how isolating CP can be for my child and for his family. I do not fail to see on my son’s face his bewilderment at not keeping up with his friends walking to their cars after school, or when he trips yet again, but no one around him did.

He knows it now.

Trying to find the words to explain something so complex, so varied and so tough to a 3.5 year old literally keeps me awake some nights. How do I tell him his legs need extra assistance for an unknown amount of time? How do I explain that the rocks he wants to climb by next year will probably have to wait a few more at least? What can I say to my son who cannot yet dress himself, that mommy will need him to try harder, even if I know he still can’t? How can I explain to him that his younger sister is moving around better than him? I am often at a loss for words.

You see, I have my days where I’m at my wits end, and everyday frustrations get to me, from the non-stop chatter to the yelling and pushing between siblings. Then before I even realize it, the unexpected wave of thoughts pushes in and I start to think about everything I tell myself to let go, and give to God.  How will children react to him as he and his peers grow older and more aware? How do I allow him to go through this and support him? What words of strength can I give him so he can use them himself? I wish I knew the answers. I really really do, but I don’t and it seems only living this will out the answers we need.

So we have our days. Special needs parents. We yell, loudly sometimes, and yes even in front of our children. We cry too, just as often in front of our children, perhaps more though. Our days are not like other parents’ days. It’s simply not true. We just have so much more going on behind the scenes, in our minds, in our hearts that even the slightest fluctuations can throw everything in to chaos.

So we have our days, and sometimes we need to.

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3 thoughts on “So We Have Our Days

  1. Hi. i am also mummy to a little boy with CP. i could have written our post. I think sometimes his CP affects me more psychologically than it does him. It breaks my heart to see him struggle. but for him its just the norm. Will had SDR in 2013 and its made a phenomenal difference. is this an option for your little man?

    Michaela

    1. Michaela, how old is your lo? I agree sometimes I feel more affected emotionally than my son, but I try hard to keep things in perspective. We haven’t considered SDR to date, things seem to be going well so far with his current therapies, and if needed more invasive treatments will be considered down the road. I am SO glad that the SDR has made such a difference in your lives. Stay strong!

      Much love, Mandy ❤

      1. Will was 8 on Monday. He had SDR at 6. I wish we had done it earlier as he now requires quite substantial orthopaedic surgery because of feet deformities.
        It’s a long old slog isn’t it. They are worth every second though 🙂

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