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Saturday, December 7, 2013

let me be singing when the evening comes.....

Hey there friends.
Just wanted to share what's happening at Chez Joy.
A few challenges, but so many blessings.

I read an Ann Lamott book recently {is she not the bomb-diggidy-bomb?} in which she shared a conversation she'd had with her best friend, who happens to be a Jesuit priest.  She asked him what he thought dying and leaving this earth might be like.  His answer really resonated with me...

"I think it will be like finally taking off a pair of shoes that never really quite fit"

How true!
No matter how hard I try to make these life shoes of mine comfortable, there's always a pebble in the sole {soul}.
Among the pebbles...
Angus who is now 5 has recently been diagnosed with epilepsy.
Thankfully, he so far hasn't had grand mal seizures and if the other kids are anything to go by, he probably shouldn't.  Yay!



I was completely stoic to begin with, but the last three or four weeks he has been getting progressively worse.  He no longer likes to run ahead of me when we're out.  He'll often have an absence {just zones out completely}, then comes to, looks around and doesn't know where he is and how he got there. He usually starts crying and then yelling in outrage - quite convinced I  had abandoned him.  Such a typically bolshie response.   This last week in particular, he's been clinging to my arms, legs, waist when we're out and I'm quietly dying a little on the inside.  My rambunctious, gregarious, hilarious boy is being driven back into my arms for safety and comfort as his confidence diminishes.




 I take heart knowing this is temporary.  Once we can get in to see the neuro and establish correct medication everything will be better.  But it's going to take t-i-m-e.  I am so pissed off.  Really, God?  Really?  Three children with epilepsy?  I know it's not cancer.  It's not chronic pain or debilitating disease.  For that I am grateful.  But it requires so much energy and focus and enthusiasm to combat.  Chances are the whole household will have to go back to a ketogenic diet.


Okay. Whinge over.
Let the blessings roll.
These would be the orthopedic inserts into my life-shoes:)

We have recently moved to a new church which has a larger children's ministry which can cater for our whole range of children and has lots of kids which go to the Christian college where our kids go for high school.  Meg, who was afraid she'd know no one when she got to high school and was beginning to panic, now has almost a dozen new girlfriends in her "kids church" group who will all be starting year 7 with her.  She is so relieved {so is her mama}.

Angus was having such a bad seizure day on Thursday, he couldn't go to preschool.  He got super lucky though and tagged along with  me to Sisterhood Cafe at church and hung out with some other preschool friends while the mum's drank cappuccino and ate spiced cupcakes with cream cheese frosting. {they have a full-on barista style coffee machine in the church foyer!  I promise this is not why I chose this church......}.  The Holy Spirit must have been working overtime that morning.  I had an incredibly encouraging conversation with a mum there who has a severely handicapped child who also has epilepsy.  We actually laughed and joked about how best to deal with medical receptionists who don't get how desperate you are to see their boss.  Sending video clips of the seizure, followed with a crying phone call seems to be the best way to a golden ticket.


We listened to Andy and Bella from Nairobi Chapel share their story which was amazing.  Andy was tragically widowed when he was only 20 years old, three months after his marriage.  After thinking he would never get over it, he met Bella and God worked amazing healing in his life, even when he really didn't feel he wanted it.  He also spoke about how at othertimes you might feel that God has put your "file" up on a higher shelf while he's busy doing other stuff.  How you can feel overwhelmed with what's in front of you and totally alone.  Um, yeah.  I think we can all identify with that feeling.  He started singing "10,000 reasons"....probably one of the best worship songs EVER.  At that moment, Angus came out of the kids room looking pale and shocked {he does this after lengthy seizures}, crawled up onto my lap and clung to me like a kitten.

The song....Andy & Bella's story....chatting about seizures.....Angus not coping .....I ended up crying silent, soul tears.  I was overwhelmed with sadness, but also relief at this big, huge, amazing God who loves me so much that He will position us so beautifully to cope by surrounding us with people, stories and songs which bring hope.

I have 10,000 reasons for my soul to sing.
"Let me be singing when the evening comes...."
Angus has been singing this song now at bedtime with me.
To hear him sing in his cute voice "Bless the Lord my soul, O my soul" with such earnestness, his little eyes scrunched up, mouth open wide.....o my soul, indeed.
Listen to this and be blessed:
{you need to follow link to youtube}





Love you more than eggnog,

Meredy xo


12 comments:

  1. I truly believe we never get more than we can handle, and when it is all that little overwhelming, we are supposed to ask for help. It always comes, and always in the most unexpected ways.
    In amongst everything thrown at us, I think the thing we forget to do is just breathe!

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    1. You are so right Robyn! But asking for help can be really hard! Darn that pride of mine:) I think I should take to wearing muu-muu's from now on to make breathing that little bit easier....especially this time of year!

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  2. Sending you a big warm hug and a box of tisses Meredy.
    Feeling for you right now, but also knowing you are a strong and amazing person.
    Day by day...xx

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    Replies
    1. Day by day....coffee cup by coffee cup....Lindt ball by Lindt ball...Thanks Kat:) M xo

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  3. Oh I hope you can get your little man on the right medication soon, so he can go back to being his lovely little self. (is his epilepsy something he's just developed? I confess to knowing little about it).

    And what words to apply to everyday life in general : let me be singing when evening comes. Some days its is easier than others to be positive!

    You still make me smile even though times are challenging for you! Good on you Meredy!

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    Replies
    1. His epilepsy has developed. Gabbie and Naomi presented at exactly this age also. He had an EEG when he was having febrile convulsions at 18 months and that came back clear, so it's a bummer it's happened now. Could be much, much worse. Grateful for good doctors and amazing medicine:) M xo

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  4. So sorry to hear of your current woes Meredy. What we wouldn't do to trade places with our babies when they aren't well. Wishing you every joy of this season with your lovely brood.

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    1. Thanks Fiona. The Christmas season is just what we all need! Uplifting music, kitsch decorations, holiday movies...it's like therapy:) Love to you all. M xo

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  5. Oh M, sending you love and prayers. What a massive challenge God has sent you. Thank you for being so brave to wirte what you are thinking and actually stating how pissed off you feel and that you have asked God in anger : Reallly? I think He would like that authenticity, I am pretty sure He has seen it before too :) ... Thanks for this share, I needed to hear about someone else's faith and willingness to feel vulnerable and angry and hear the comfort of faith today. You strong lovely girl - I am really sorry to hear about little Angus, I truly hope things are balanced out very soon and progress to the new lifestyle is rapid xxxx

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    1. Thank you lovely friend. A new lifestyle is exactly what's called for! That's the good news and the bad news:) It's all really pretty good in the grand scheme of things....just seems a little overwhelming at first. M xo

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  6. Wow, meredy, that's huge. Sending love and hugs your way this Christmas x

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Thank you for leaving a comment - I look forward to visiting you soon! Meredith xo.

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