I remember what life was like before seizures came into the picture of our family. It was peaceful. We had hope. We knew that God was for us. There was no question about His active involvement in our lives.
Fast forward ten years, and it feels like a distant memory. As if I remember someone else’s life. I feel a great sadness well up within me when I try to recall what it was like to fully trust God, no matter way, no strings attached.
Now every day is a struggle. To choose to believe. To overlook the pain and sorrow. To bypass uncertainty of God’s awareness of our situations. To wonder why His love is so great, but His presence is so minimal.
Some would say the place I remember is one of naivety. If so, I long for naivety to return. I miss it.
Pain and sorrow and fear and worry and wondering if we’ve left God and wondering if He’s left us and confusion and seizures and tears and body aches from falling during a seizure and lost memories and the mockery of children for my daughter…..sometimes it’s just too much.
I want to remember freedom — it is fading from my mind.
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This breaks my heart. We have a saying in my country, South Africa, that children with such illnesses like your daughter, are Heaven’s Children. They are special in a special way to our Pappa God!
Much love to you
This is so sweet. Thank you for sharing that. I guess I know my daughter is a special sort of sweetness to my God in heaven, but some days it’s harder to remember that than others. Today is one of those days. Thanks for pulling me back to truth
Chris, what love that pours from the honest heart of a Daddy for his girl… this is honest and heart breaking and inspiring all at the same time! I clicked on your link from Lisa-Jo’s and I am glad that I did! I could think of encouraging words but I am afraid they would seem like pat answers… like well meaning things you have heard before! I am praying that He will relieve that struggle… show up in new ways and (re)assure you that He is here. May He prove Himself very present, and may freedom reign!
Chris, my heart aches for you and your family. It is amazing the raw emotion that one word can evoke. You write with such honesty, so pure from the heart. And I know that you miss the old you…I can relate to that, and it is okay to mourn that loss. I also know the hope you have and cling to everyday. You have not left Him and He has not left you! These are trials that only He understands fully, but they are still tiresome trials. He is close and not letting you go, no matter how weary you become, He does not grow weary. God bless you, Friend.
Lauren, thanks for the tender words. I try to choose to hope in God each day. Sometimes, I lose sight and it gets hard. For some reason, this word Remember keyed into my sorrow.
I really appreciate your reminder that He is faithful, even in dark times.
There is a challenge in giving worn-out phrases in the name of comfort. “God works all things together for good…God’s has a good plan for you, plants to bless and not curse.” These are Scriptures, and they are true. But for chronic conditions, they feel like a cop out.
I hear your heart coming through for me here, Karrilee. Thanks for your tender care
That’s some powerful writing there. I can relate to what you wrote about, in different ways. God bless you brother.
This is raw and real and painfully honest. I really feel for you, Chris. Over the last 20 plus years I have lived with chronic sickness and there are no easy, pat answers that satisfy. All I do know is that God cares, He is present in the pain and suffering. His grace can be enough to help us stagger through, one day at a time, as we live with mystery and misery combined. He shows up strong in our weakness. His light is still shining from you, even if you cannot see or feel it right now. Pour it all out before God. He will weep with you as He holds you safe. Our lives have a purpose beyond everything we see, feel or know. Even in this. Praying for you to know His healing touch on your body, mind and emotions. We are all wounded warriors at heart. Bless you.
I think we all have our memories and realities of pain, right? God is faithful, even when we doubt. I think I needed to write this out to restore my hope in the goodness of God, even when He feels absent
Praying for you Chris. Touching, honest writing.
Thanks Pamela. With chronic conditions like seizures, I think there are times when I just get tired of everything being so hard. The word for this week’s FMF just hit a sore spot for me. Especially coming off the week I’ve had.
Joy, you are so right about no easy answers. And I am staggering forward in my walk with my God. Thank you for pointing me back to our ever-present Lord
Just remember that God has prepared your for this time. He’s provided you the spiritual strength to get you through. I believe there comes a time in our Christian walk when we begin to mature and the hand holding becomes less frequent. I know you know he’s there. My prayer is that you’ll sense the strength of his presence.
Sometimes I wish God didn’t trust me so much 🙂
We pray each day to have the eyes to see God’s heart in the midst of these trying times
Some things in life are just tough. As one author I read said, Job’s story didn’t have a happy ending. He didn’t get his original children back. Sometimes we forget that.
So true. God’s plans don’t always coincide with our own happiness, right?
Chris, I remember from the time I was a child and had witnessed an episode of a young man’s seizure and the struggle my mother had to go through to help him and protect him from harming himself. That was over 60 years ago. With medicine, it must be much easier now…still it is a lot to bear. I admire you so much for not letting it turn you bitter or unable to move forward.
I do not believe bad things are God’s doing. Bad and good coexist. How could we grow if everything was perfect all the time? All of us carry a cross…all of us have hurdles on our path that we need to overcome. He is there though, with us, in our pain and struggles. You are a wonderful, wise, and spiritually grown person, despite your handicap, or maybe, because of it! I will remember you in my prayers!
Medications has made it a bit easier, but a seizure in public is still a seizure in public. People freak out, misconceptions abound, and sometimes even family members are not helpful in keeping things calm.
I cannot imagine my life apart from my God. I don’t understand why my daughter and I both have seizures, but I cannot allow these events to confuse me about how my God is. Some days, i am more successful at this than other days.
Heather Baumann Kau
Yep. It is still in public… I want you to know something. It is a daily struggle to live without fear of what the public will think… but then when it does happen, and the people that love me are there to support me, I never stop being grateful for their help. Kevin is my biggest advocate- and I know God plopped me in his life just for that! Not many men would care for me the way he does. And I don’t say that enough in the midst of the anger and pain, it is hard to remember the good stuff. Praying for you, my friend. Always!
You are one of my heroes, seriously. I know the fear that seizures bring as a parent, but have only had a few months as the one having the seizure. Your courage inspires me. I agree – Kevin is an amazing dude! I think he picked it up from one of his college roommates. 🙂 All joking aside, your husband is a stud. I hope my wife feels as supported by me as I you do by Kevin
Prayers and blessings to you.
This is beautiful friend. Not beautiful that you suffer, but beautiful that you capture the feelings of all of us that struggle. Thanks for sharing your raw, honest thoughts. My heart beats with yours.
Alene, thanks so much for the kind words. I had a feeling my emotions would resonate with others
You said you wonder why this is shared by you and your daughter. I wonder if being the loving dad you are, if you were to have witnessed it without experiencing it, if you would have the bond you probably share with her? I cannot and will not try to guess how hard it must be, but I will tell you that even in those times He feels silent, He’s there. How do I know? He promised. And He doesn’t lie.
I’ll pray for you in a more direct way now that you’ve opened up and let us see into the furnace you have stood. I’m glad you are not alone.
Thank you for sharing. We wouldn’t choose the things God chooses. But we would choose the comfort. I pray you feel that comfort as you used to.
Thank you for the reminders: I am not alone. He is not silent. He doesn’t life.
You are so kind-hearted and I appreciate you so much. Always drawing me back to our Source, our Love, our God
Trust becomes real in a very different way when life gets mucky. From this side of the much, I feel as though I didn’t understand what the word trust meant until my life stopped working the way I wanted it to in a really deep way.