Especially today, I walk the line between elation and despair. Every few weeks a new medication comes along with die-offs and reactions and a little growth in some area. And each time I wait on pins and needles, watching for something, some confirmation that says I can can relax now, Kaylee is going to be OK from here on...I am waiting to get to really know her.
And when we have setbacks and die-offs, I fear. I grieve all over again as if it were the day I left the doctor's office with the word autism ringing in my ears.
I am so tired of this roller coaster. How does one hope with all of their heart so badly and not get disappointed? Is that possible? Or because I truly hope, is that just the heartbreaking risk I take?
That is one of the hardest parts of Kaylee's diagnosis I have had to deal with is not being able to just accept autism and move on. Because there is a question of recovery in these children a parent always wonders and hopes their child is that one child that can be helped...therefore delaying the "acceptance" stage.
My wondering has left me stuck in a wilderness of waiting. I always dreamed that Kaylee and I would have a close bond where we could talk about anything for hours, the way my mother and I did. Now I live in an up and down cycle of grief and hope: grief of the loss of a dream for my little girl, and hope that the dream is not gone.
I am so tired, a deep tired that reaches down to my soul. I haven't had peace in a long time. I have been waiting on the edge of my seat, wondering what the next act of this life will be: a road to recovery or time to start accepting. It's so tiring to wonder like that. I have just been surviving, missing many moments with all of my children because of my lack of joy.
Sometimes I wish I could just let go, stop fighting so hard with all that I have, but I am afraid...if I stop fighting for Kaylee, who will fight for her?
As I ask myself this, I close my eyes and I can see my Lord Jesus, He holds out his arms to me and asks "do you trust me?" Isn't that what this is all about? It always comes back to this point: Do I trust Him? He who stopped at nothing to save me from my sins? How could I not trust Him?
I see myself across from Him, holding Kaylee so close, clutching her so hard, afraid to let go. I am afraid if I do I will not get my dream. I am afraid if I let go, I won't get what I want: I want Kaylee to get better. I want to sing and laugh and share with her.
Kaylee is His child, I forget that sometimes. I pray as if I am pleading with God to help my child when He loves her so much. I don't love her anymore than He does. Jesus laid His life down for her, too. I need to trust Him and what He wants to do with His child.
I don't want to fight her Father's will her, I want to trust Him, no matter what. Every morning, I am going to give Kaylee, and my other children to Jesus. I am going to trust Him.
I am the good shepherd:
the good shepherd giveth
his life for the sheep. John 10:11
Jennie,
ReplyDeleteAmen! Trust is a difficult thing at times. We who know the Lord Jesus Christ as our personal Saviour have everything. Unfortunately, we all at times take our eyes off of Him. This was an excellent post. It is what people need--to have someone such as yourself to so elegantly express your feelings. Remember (and I know you do) God put everything in you that you need.
Cindy
Jennie,
ReplyDeleteYour post was very good and I'm sharing tears with you right now. I do forget that my child is His and that He grieves as I do when he is suffering. I do trust that he will heal Mason, but know it will be in His time and not mine. That's the hardest part to cope with. I know He will heal Kaylee too and many others out there, but it will be in His time. Thanks for sharing your heart and know you are not alone. I've shed many tears over the times I have realized the time I've missed with my other son because I've been so wrapped up in trying to help Mason. The important thing I guess is to recognize it, turn it over to Jesus and then try to change your behavior and spend more time trying to enjoy all of your children. Your post has made think I should start off and end my day in prayer asking for God to show me the joy of that day and maybe even to journal it. I think there is so much joy that is already there, but we don't see it for the pain in our hearts. I'll pray that God keeps Satan from robbing your joy.
Carrie
When my son was first diagnosed, a mom down the street who has an older son with autism told me, "You're not always going to be obsessed with autism. Someday you will be trying to decide what dining room furniture to buy." While her example probably could have been better, she was right in that as time goes on you do learn to go on with life. And as a Christian you start to see how incredibly faithful God is, and it becomes easier to trust Him more. I'm not saying this to diminish the feelings you have, but hopefully to encourage you. Your feeling are natural, but it will get better. My husband and I continue to do lots of things to help our son, but if God were to push the STOP button on his progress we would still have peace. Of course we still have our moments of non-trusting, but it is easier to get back on track than it was in those first few years after diagnosis. I'll be praying for you!
ReplyDeleteKellie