Never give up
I am a disaster. I am emotional. I am sad. And I feel the hope we have clung to for the last two years falling through my hands like grains of sand.
I maybe just ran up the hill to my house faster than I have run since I was in high school. Booked it. Because I am angry. And sad and I was gonna make that hill pay for that anger.
Yeah- it didn't really help. And on top of my anger and sadness I wanted to vomit. FAIL. But on the plus side my sis-in-law and I shaved a solid 4 minutes off our route tonight.
Tonight I am looking at my life and wondering how this can be it? Wondering why these hard things have happened to me. To my girl.
We went in for a video EEG due to some suspicious seizure activity from Emmaus. I thought we would have to stay the whole 3 nights to catch something. That we would leave saying a med adjustment would do. Or better yet- that perhaps she wasn't seizing at all.
Instead in less than 24 hours they had plenty of data. She had several seizures we had seen. And even more we had not. In fact the neurologist running the EEG said the tuber that initiated the seizures was firing (aka seizing) about every 5 minutes. Thus she is seizing almost continually. We don't see them that often obviously because it isn't spreading to other parts of her brain causing the staring/blinking/giggling we have been seeing. Yeah- thats only happening 6-8 times/ day.
I got my hopes up. In the season following surgery where she had zero seizures I got to hoping that seizure freedom would be her norm. I started to feel safe in the everyday.
The walking up the steps by herself. The sitting in the bathtub while I grab a towel. The playing in the living room while I cook in the kitchen. You know, things typical non-seizing 3 year olds have freedom to do. I stopped telling everyone she has seizures. The longer we went without one the more safe I felt.
And while losing the hope we have clung to so fiercely really hurts. It is better than never hoping at all.
So tonight while I feel so defeated, tired and lost. I know this.
God is good.
Even when he lead his people into the wilderness He provided them with everything they needed to survive. And he eventually lead them to the promised land.
I believe the same is true for us.
Tonight I am very thankful for the community we live with. Because I truly feel too weak to walk. To think and to deal. And so I know the people that surround us will help carry the weight for a while. So we can grieve, regroup and stand back up.
And the peace of knowing that is amazing.
I maybe just ran up the hill to my house faster than I have run since I was in high school. Booked it. Because I am angry. And sad and I was gonna make that hill pay for that anger.
Yeah- it didn't really help. And on top of my anger and sadness I wanted to vomit. FAIL. But on the plus side my sis-in-law and I shaved a solid 4 minutes off our route tonight.
Tonight I am looking at my life and wondering how this can be it? Wondering why these hard things have happened to me. To my girl.
We went in for a video EEG due to some suspicious seizure activity from Emmaus. I thought we would have to stay the whole 3 nights to catch something. That we would leave saying a med adjustment would do. Or better yet- that perhaps she wasn't seizing at all.
Instead in less than 24 hours they had plenty of data. She had several seizures we had seen. And even more we had not. In fact the neurologist running the EEG said the tuber that initiated the seizures was firing (aka seizing) about every 5 minutes. Thus she is seizing almost continually. We don't see them that often obviously because it isn't spreading to other parts of her brain causing the staring/blinking/giggling we have been seeing. Yeah- thats only happening 6-8 times/ day.
I got my hopes up. In the season following surgery where she had zero seizures I got to hoping that seizure freedom would be her norm. I started to feel safe in the everyday.
The walking up the steps by herself. The sitting in the bathtub while I grab a towel. The playing in the living room while I cook in the kitchen. You know, things typical non-seizing 3 year olds have freedom to do. I stopped telling everyone she has seizures. The longer we went without one the more safe I felt.
And while losing the hope we have clung to so fiercely really hurts. It is better than never hoping at all.
So tonight while I feel so defeated, tired and lost. I know this.
God is good.
Even when he lead his people into the wilderness He provided them with everything they needed to survive. And he eventually lead them to the promised land.
I believe the same is true for us.
Tonight I am very thankful for the community we live with. Because I truly feel too weak to walk. To think and to deal. And so I know the people that surround us will help carry the weight for a while. So we can grieve, regroup and stand back up.
And the peace of knowing that is amazing.
And this girl. She is fierce. She is strong. She is my hero.
Slowly, gently, she is teaching me to never give up.
So I won't.
So I won't.
I'm so sorry, Laurisa. Praying for you tonight.
ReplyDeletePsalm 27:13-14
ReplyDelete“I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.”
◾Isaiah 53:1- 5
“Who hath believed our report? and to whom is the arm of the LORD revealed? For he shall grow up before him as a tender plant, and as a root out of a dry ground: he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him. He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not. Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.
I will continually bring her before the Lord... My heart goes out to you! Karen Secord