Parenting is amazing, it’s rewarding and joyous with of course the occasional tidbits of tantrums and loud crying. And then there’s the exhaustion, lack of sleep, sleep deprivation and constant unsolicited advice. The one thing they fail to mention though is how much coffee will be consumed. I’ll have to admit, I drink my morning coffee and immediately crave a second cup, but self control kicks in and I don’t. So here’s the lesson of the day, when preparing for babies arrival, plan to include a nice stockpile of coffee – you’re welcome!
The past week has been a whirlwind. I’ve had my ups and downs and have been a ball of emotions. Last weekend I had to be taken to the ER due extremely intolerable symptoms due to Chiari and since then have had this week to recover at home from such events. Yes, I do take medication for many of my ongoing symptoms but when the medicine doesn’t do what it’s meant to help with, I progressively feel worse, and that’s when I take a trip to the ER. It’s no fun, it’s tiring and unfortunately I’ve been to my local hospitals ER more than I’d like to admit.
While at the hospital though, I came to thinking about Chiari and what it means to me. I was thinking of what I can compare it to. I had so many nurses and a doctor come in to see me in my room and had no idea what Chiari nor Syringomyelia was. I don’t blame them though, the lack of knowledge and education on such a rare illness is seen too often, especially in the medical field.
I finally narrowed Chiari to this – that unwelcome house guest.
The one that refuses to leave no matter what signals you throw at it.
The one that has no remorse in overstaying their welcome.
The one that doesn’t shy away from being loud.
It has the worst timing!
It doesn’t care what day of the week it is.
It’s there and it isn’t looking like it has a departure date set.
If you have someone close to you that has chronic pain, lives with Chiari Malformation, Syringomyelia or any other illness, the best thing you can do for them is educate yourself on the matter. It’ll mean more to them then you’ll ever know.
This morning while trying to get somethings done for my social media accounts, I decided to put on some background music. And I decided on this song, ‘I look to you,’ by the late Whitney Houston. I don’t normally work while listening to music, it’s really distracting and I get nothing done. My work area needs to be quiet and in order. But the calling was there, for me to go back to this song, and it lifted me.
I’ve been connecting with others with Chiariand although I’m grateful, it also tends to try to pull me down. On one hand I’m happy there others experiencing what I’m going through, but on the other, it’s incredibly sad to know there are others trying to get through their day with chronic pain.
I get asked a few questions when someone realizes my diagnosis, and one that always sticks out is, ‘how do you do it?’ I understand because it’s almost dumbfounding to see this mother of six living with chronic pain. And there is no one answer, there is no perfect answer, actually there is no answer other than Him. He gets me out of bed when my body isn’t able to, He reminds me I am loved when I feel I’m a failure, He helps me take the steps when I’m in too much pain to walk, He holds my head when I feel it’s going to explode in pain, He helps me care for my children when I feel too ill, He reminds me to take my medication because He knows how much I dislike them, it’s Him, that’s how I do it – daily.
If you’ve never heard this song – or haven’t heard it in a while, I invite you to listen. It’s an amazing song, full of hope, because what you’re going through today you will get through by looking up to Him.
My favorite verse in the song, ‘After all my strength is gone, In you I can be strong.’
I Look to You
As I lay me down
Heaven hear me now
I’m lost without a cause
After giving it my all
Winter storms have come
And darkened my sun
After all that I’ve been through
Who on earth can I turn to
I look to you
I look to you
After all my strength is gone
In you I can be strong
I look to you
I look to you
Yeah
And when melodies are gone
In you I hear a song
I look to you
After losing my breath
There’s no more fighting left
Sinking to rise no more
Searching for that open door
And every road that I’ve taken
Led to my regret
And I don’t know if I’m gonna make it
Nothing to do but lift my head
I look to you
I look to you
Yeah
And when all my strength is gone
In you I can be strong
I look to you
I look to you
Oh yeah
And when melodies are gone
In you…
A-
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Mom Life With Chiari 