Recently I've had some of the bluest, toughest moments ever.Everything has just hit me like a ton of bricks.This last seizure Daniel had coughing up blood, choking,turning blue and unresponsive was just awful.His seizures have always been horrible,but lately they seem to continue to get worse.
Ariel's had so many issues between seizures,kidney,stomach,wrists you name it.Not sure if this is all part of this syndrome or not,but I suspect it is.
We've had a lot of losses recently due to SUDEP(Sudden,Unexplained,Death in Epilepsy Patients) I wrote more in detail about it here:
http://marrerofamilymakingthemostoflife.blogspot.com/2011/10/sudep-sudden-unexplained-epilepsy.html
I think this is something that all parents of kids with Epilepsy,especially when it is Intractable fear.
Something I try not to think about a lot,but it is always on the back of your mind.
Last week I sat in a little coffee shop reading my Bible and meditating on it.I especially like to read the Psalms during blue periods.I had been thinking about things and thinking why? It's feels so unfair sometimes.My kids should be doing what all the other kids their ages are doing.This syndrome has not only wiped their bodies of so many things and has caused so many physical problems,but has completely wiped their brains of so many things,like memory,thinking skills,understanding and has also caused horrible sensory issues ,especially with Ariel.Crowds absolutely make her shudder,whether it be at church a restaurant or wherever.
I was reading in Ecclesiastes about life and the meaning of life and realized that some of the things that I've been so desperately clinging to the Bible calls vanity.Not that God doesn't want you to have an abundant,rich and joyful life,but if that means serving God making the most of each day God has given us, then so be it.Even if that means just doing the mundane,day to day things.
None of us are guaranteed tomorrow.Our life is but a vapor.
25Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body than raiment?
26Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?
27Which of you by taking thought can add one cubit unto his stature?
28And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin:
29And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.
30Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?
31Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed?
32(For after all these things do the Gentiles seek:) for your heavenly Father knoweth that ye have need of all these things.
33But seek ye first the kingdom of God, and his righteousness; and
all these things shall be added unto you.
Also:
Philippians 4:19
But my God shall supply all your need according to his riches in glory by Christ Jesus.
What I take from this is that God knows our needs and he shall supply them,no matter what it is.I think it's sometimes the timing part that trips us up.
That's why I'm learning to praise God through life storms,but it sure isn't easy.
http://marrerofamilymakingthemostoflife.blogspot.com/2012/03/praising-god-through-storms-of-life_7991.html
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