“Her brain is abnormal and that in itself brings global delays. But, her seizures on top of all of that make it even worse.”
This is what one doctor said to us the other day. I had asked him if it was common for it to be so hard at the beginning, and if it starts to get better over time. This was in the same appointment where we were told that Hope would definitely need a G-tube.
“Oh, the keto team won’t do anything unless she has a G-tube.”
Thanks a lot.
Sometimes I feel like we are continually being knocked down. I try to find the words to describe just exactly how I’m feeling, and saying I have a broken heart doesn’t even do it. It feels shattered most days. There are days where I really feel like we’re in a pit. I picture a ditch sort of – and there are days that I am crawling up the sides to get to the top, and the dirt on the sides are crumbling, making it hard for me to get up there – but I keep going. And then sometimes I make it to the top, but it’s like something is up there and once I reach the top, it pushes me back into the ditch and I’m right back where I’ve started.
Are you depressed yet?
Situations like this really make you search, evaluate and work out your faith like never before. Did I even know God before? Did I even ever really feel like I needed Him? Oh boy did I ever need him – and do I ever need Him now.
Driving home from the hospital the other day, after talking about her brain and especially focusing on a G-tube, I wanted to cry – well, I felt like that’s what I needed to do. I needed to react, because that’s what I do every time we hear something new about Hope – or things we already know over and over again. I did cry a bit – but that car ride was different. There was this strange peace in my heart. Yes, my mind was racing – it felt like the right thing to do was to be freaked out and worried – but my heart was at peace. I had already had my many days previously of crying, worrying, reacting – but it was different that day. It was like my heart wouldn’t let me fully react because there was this peace washing over me knowing that God knew this moment would come. It wasn’t a surprise to Him, and because of that He would continue to give us the grace to handle each new thing that would come our way.
Knowing that God knows and goes before us makes all of the doctors appointments, discussions, and tough days a little bit easier. It may seem harder because we have to be continually reminding ourselves that He knows and He is guiding us, but I guess that is better then coasting through life thinking that every thing that comes up, and every outcome, rests on us.
I know I need to change my perspective – instead of imagining that I am climbing out of that ditch, I need to KNOW that it’s actually Jesus reaching out His hand and pulling me out. Reminding myself that the God that we serve is the God who rescues His children and promises to always be present and near.
I hope that you can be encouraged in knowing today that whatever it is you are going through – He is so intricately involved in every single detail of it. For me, it is this daily – sometimes moment by moment – resetting of my heart and mind to trust Him again and again. Try to remember, if He takes care of the sparrows and the grass of the fields, why wouldn’t He take care of us? I hope you can rest in that truth today.