What a battle we have had with this one!! We continue on with the fight, just different feelings and different trials. We all have them!!
To start, Faith had some seizures today. Not just one, and not just small focal ones either. These were real, they were scary, they were draining to watch...
There is such a fine line...between faith and reality. I have said this before here. I am a real person who still has faith. We were at a bbq at a friends house. A lot of people from church were there enjoying the day and the fellowship. We noticed Faith was having a seizure when she was in the swing. So, I took her out and cuddled her, which is what we usually do. Easy to watch her breathing and make sure she is ok.
She seemed to have come out of the seizure and took a drink of water, holding the cup herself. She was a little out of it, as expected, but seemed ok. We put her back in the swing, and she was swinging away, just gently, and Pete was over there watching her. I was sitting back, but we could tell that she was having another seizure. So he took her out of the swing again.
She sat on his lap and it looked like the same kind of seizure as before, but it was lasting a bit longer. Then her tongue started to twitch, back and forth. This is not typical for her. We had not told the others in the house that Faith was having seizures. We thought it would be basic and she would be done. But then her mouth started to twitch, a friend told the people in the house and they started to pray for Faith.
They came outside and laid hands on her, praying for healing and strength for me and Pete. It felt great having so many people there and caring. I just kept watching her face.
I knew, at one point, that we really needed to get to the hospital. This wasn't her usual kind of seizure and it had now been going on for a while. This is where my struggle really came in...
Do we interrupt people praying, do we call 911, do we continue to pray harder? Do we, do we, do we??? I really struggled. If we phone 911 are we cutting our faith short? If we don't phone 911 and something bad happens, have we let our child down? I really haven't felt that before. I really struggled. I know that I always say...I have faith, and I am also a real person...but I never felt like that before.
Thank goodness a friend was watching me, and I think she knew what I was thinking/feeling...I looked at her and said we need to call 911. She did.
In the end, Faith had 1 focal seizure, 1 grand mal seizure in the yard, and 1 grand mal seizure started in the ambulance. She received an anti convulsant en route to the hospital. It did not have a sedating effect on her, which we had expected...instead, she fought all the nurses and doctors with the needles, the bloodwork, the IV, the monitor leads etc...she kicked me and pinched me, she tried biting the blood pressure cuff off. She also tried biting the IV tubes out of her arms. She was just a fireball. She ended up having a small case of Todds Paralysis. She would smile with only the left side of her mouth. We will see tomorrow how that is and if it has corrected itself.
She finally crashed and hasn't really woken up since.
We have decided that this is not what we want for our family. The uncertainty of where and when, the emotional rollercoasters that everyone ends up on and the ride never stops...
We had her half loaded with phenobarbital and we start her regular doses tomorrow. She is now on medication. I question whether we have made the right choice or not. Are we doing this just because we don't want to deal with the seizures? Are we doing it because it is right for her? Are we being selfish by not standing firm in faith for her healing? Are we letting her down? Are we letting our family down? What kind of an example are we being? I don't know, I am frustrated, I am down, I feel like that heavy iron has landed on me.
The difference is, I know I can get back up and I know that I will get back up...I know that I can trust, I know that we are more then conquerers...we have Jehova Nissi (I do listen in church;-).
Thanks for everyone who talked to and prayed with my kids, who was willing to step in when help was needed, for everyone who prayed for Faith and for me and Pete.
THANK YOU!! You make the difference in our lives!!
You pray. You do what seems best at the time in regards to treatment. You study and learn and pay attention to her needs. And you trust God, no matter what choices you've made, because He holds all that in His hands. HE knows you don't know if you've made the #1 decisions. We have such a difficult time giving up the need to KNOW for certain, and still be at peace. I'm praying for you to find that peace in the turmoil.
ReplyDeleteGod is apart of your life and family and hears your prayers the medicine doesn't have to be forever. And you have and continue to be your childs advocate while she is young God has entrusted her to you... and your relationship with the heavenly father is where your gut feelings come from. I love you very much continue to follow what you hear from God. Pete is hearing too and you both are in agreement and you always make choices together. Let me know later how things are going if you need anything done for you.
ReplyDeleteHey Ruth,
ReplyDeleteSorry to hear that you all had such a horrible struggle yesterday. Just wanted to encourage you that God created medicine as well..you are not letting him down because you have her on it..it is not a lack of faith..it is doing the very best for Faith you can while you wait!
On another note, it is very normal for people to "freak out" when coming out of a seizure before they crash...I did the same coming out of mine. I'll be praying.
Carrie
Ruth I agree with Carrie, being on meds is NOT a lack of faith! that must have been so scary and I can't imagine what that is like. You are amazing parents!
ReplyDeleteWe want you to know that you are an incredible mom and an incredible woman of God. You are doing the right thing for your daughter.
ReplyDeleteYou do what needs to be done at the time it needs to be done and at the same time continue to stand on His Word and believe for a full recovery. That's not being double-minded! Sometimes it is bit by bit and little by little that we take the land. Continue to call those things that be not as though they are. Continue to call upon the name of Jehovah-Rapha, Shalom, Jireh, Nissi, Shammah, Tsidkenu, M'Keddish, & Rohi. (it's a good series he's been on, eh?!!!) :-)
She has come a long way since the day she was born and each month there is a new area of growth. When she was born you know you saw angels with her in that room, you know you saw God's hand upon her. That in itself, my friend, is something that takes an enormous amount of faith.
Don't let the enemy steal the ground you've fought for and have a stake in. We'll continue to stand with you as well. You're right, you are surrounded by a family who loves you guys dearly.