Transition. Acceptance. Denial. Hope.
Continue seeking a cure at any cost.....Make every moment bearable and more comfortable?
How do you find a cure or treatment when you can't even pin point the problem?
How do you fix what may not even really be broken?
How do you fully accept what may or may not happen....even though at some point it is really inevitable?
How can you make your heart and mind agree with what you feel is best?
If you feel like you've been running in circles and nothing is really changing then is it ok to stop running?
If you continue to look for answers and seems like sometimes it does more harm than good then it really is better to just let it be - right?
BUT....What IF?
I know this is a big jumbled mess of a post, but I can't help it. My thoughts have been a big jumbled mess for a while too.
Thankfully, Zeta seems to be having a good day. Yesterday was good too. Her seizures (and the autonomic dysfunction) are controlled...for now....the thing is her latest VEEG has "not been encouraging"....she hasn't actually had any seizures since we've been here, but her brain is apparently unhappy. (for lack of a better word). The bloodiness from her trach and belly have once spontaneously resolved again too....it's a scary and unpredictable cycle....with no answer to the repeated question of why....
Don't get me wrong...I am INFINITELY grateful for the medical care we receive. I know that we could not ask for more. I know, without a doubt, that these people truly care about my child.....I'm also smart enough to know that sometimes there is only so much that humans can do. The rest is up to God. We spent the greater part of yesterday having just these type of conversations with numerous doctors and staff. I am thankful that they know Zeta well enough - and know us well enough - to give open, honest, and thoughtful opinions about Zeta's treatment.
These conversations have been tough.
I find myself wishing I could disengage.......but I've learned that coping mechanism quit working for me some time ago.
I feel like a broken record....but please continue to pray for Zeta. Pray for our family. Pray specifically for our decisions to be led by Zeta's needs and not our own. Pray for her home care team and her team here also. Pray for our boys, our parents, and grandparents. Your care and support are beyond measure.
M. Scott Speck
Angel, you do not sound like a broken record. You sound like a mother who is broken and poured out because of the suffering of your precious child. But your prayers are tears that the Master sees and is storing up in Heaven. He will restore all that you have lost or will lose there. It will be the place where we get back all that the "locust have eaten." God bless you in your struggles and give you the strength to hope for just this day. And then comes tomorrow...
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