On top of the adoption we are still trying to figure out Drew's epilepsy. Sobbing begins again as I consider our inability to monitor his seizures. Fault of doctors not knowing the best way or communicating it, fault of ours because we choose not to sleep with him each night or no one's fault. It is what it is?? Either way the unknown makes it difficult to treat, understand and sometimes even comprehend. That journey has also been painful. Watching your son's demeanor change through every medication adjustment. Trying to wake him mornings after his sleep was disrupted and he cries, i mean sobs, he can't go to school because he's too tired or his legs hurt or he has a headache or he hates school. Telling your son that he can't stay up with his cousins because it puts him at risk, so while they continue playing, pretending, dreaming, exploring and building memories...you have to go to bed. IT'S NOT FAIR!!! I've heard it so many times and I can say nothing but I know. Reminding him he can't eat for a 3 hour time period because of his medication when he's a growing boy who could eat all day and still not be full. His anger rises at times, wanting to understand and lashing out at me. You're ruining my life, Why do I have to, why are you doing this...and so on. I try to remind myself that it's likely not permanent and could be so much worse. But it is SO hard to know that your son, for the next 8-13 years or so of his life will be restricted. That's if he grows out of it. Which thank the Lord is likely!
The other night as I was headed to my bedroom my daughter stumbled out of her room. I held her and asked what was wrong but she couldn't speak. She mumbled a bit and her eyes rolled some. Her lip was twitching and she jerked about a bit. I want to believe she was sleepwalking as my oldest does at times, but a part of me fears she too has epilepsy like Drew. I can't live by fear. I won't. However, with her moving about at night, Drew's diagnosis and Qade sleepwalking at times I'm not really sure how I get good sleep. On top of that we are fostering a puppy right now. Early morning barks force one to be an early riser.
So many more unknowns are swirling in my head as I type. Will we stay in this home or move this year? Will we keep this puppy or only foster for awhile? Will there be more hospital bills arriving that I forgot about and have to find money for? Will I ever get anywhere on time again?? (Yes. This is a legit unknown!) What will I do next year when all of my kids are in school? Why do I miss my parents more now than when they first moved? For the love of pete why is it snowing again???
On top of all that I work 30 hours a week between childcare, children's assistant at church and preschool teacher. I have a home to tend to, mouths to feed regularly, dogs to care for, laundry, bathrooms, sweeping, etc... Life. Is. Exhausting.
This is my life. This is where I'm at. I'm not looking for sympathy. I'm not trying to whine. I'm just being real. God knows my heart. He knows my needs and he certainly provides. By faith I will continue to walk this out. By grace I will stumble and get back up. By love I will be carried. By hope I won't give up.
"I will walk by faith even when I can not see."
2 Corinthians 5:7
Just remember you have embarked on a journey which was never promised to be easy as I well know from raising you and your sisters. I've always believed god knows us daily and how we feel so he heard you this am. I too have had a heart hurting week but I push through as I know too he hears me and sees my rolling tears. My heart aches for you but as you said things are not in our control. Just take deep breaths, cry whenever and search out hugs everyday! It will get better and later you will wonder where all those days went. Love you dearly!!
ReplyDeleteOh Daniele! My heart aches for you. This truly is a journey, hard sometimes achingly slow and taking forever! (Are we there yet?)
ReplyDeleteI'll be praying. Please know you are not alone. I can't say I know exactly how you feel but I do cry and have four kids and one with life long health issues. The initial stage is excruciating. After reading about the side affects of not enough sleep (i.e. death) I decided no matter what I will make it a priority. Cleaning and sometimes family time suffers but when I am awake I'm a much better person. May God give you wisdom in all these struggles.