I honestly delight in knowing my positive outlook helps others. I am filled when others say “you give me perspective”. I live with the mission of taking what we get and seeing the good in it and sharing that good. We've been through a lot. Not anymore than anybody else, we all have trials, but I think it is safe to say we've been through our trials. And I am not even saying I am an optimistic person, because I am not. I am a realist. My husband says pessimist, but I totally disagree and call it realism. I think when your heart has been broken more times than you can count; you are always waiting for the other shoe to drop. At least I do. But even as a realist, I still am able to find the good and share the good. I don’t think I would survive without it. I know the light is from God and I am just glad I have figured out how to find it. I know without that light I’d be a wino living in a dumpster. I have that tendency to find a place where my troubles won’t find me and I am so glad I found a light that keeps me from that dark.
But with all that said, last night sucked. I honestly went to bed last night wondering if Lily would wake up today. I think I knew she would, but it didn't keep me from waking up constantly and going into her room to check on her and basically annoy her by waking her up, touching her making sure she was breathing. Her seizures were so bad last night they surprised me. And that is not easy to do after 10+ years of dealing with seizures. After they settled we just sat on the couch, I held her while I watched Parenthood on Netflix while Oliver ran amuck. Andrew and Andi Jane headed up to Greer early so it was just us three at home last night. But my mind started racing, and no good was being found. Yes I was able to snuggle my 10 year old on the couch while she slept. Who gets to do that? But I couldn't help but think she should be up north with her dad and sister planning on going snowboarding. Not sleeping in her mom’s arms because the seizures have been relentless on her body and she is so exhausted a loud 3 year old doesn't even jostle her. Yes I was loving the cuddles, but she is so passed out it probably didn't matter if she was in my arms or in her bed. I had to think about Lily and this disorder that had completely changed our entire beings. So much to be thankful to Lily and who she is, but so much to feel angry towards as well, and I know anger is secondary and it is secondary to my sadness that yes I know life isn't fair, but does it have to be this unfair?
I think about the kids with cdkl5, rett, cerebal palsy, md, ms, angelmans, etc and I just say, really?
I think about the majority of kids with rett and other disabilities and those who have passed away mostly do it in their sleep. Or in a hospice. And I think is this what we are waiting for? A morning she doesn't wake or a long drawn out awful process in hospice. And I think again. How is this fair?
I think about how on Dec 20th we went to meet a Palliative home care team and social work team. I know they are for our good and will help us make choices that only benefit Lily, but I think about the meetings we have coming up where we make decisions that we will place on a virtual shelf and pray we never have to bring it off the shelf and actually put these choices we made during sound mind to action in a time of chaos. I know we are doing the “right” things, the “responsible” things, but then my breath hitches at the thought that we are making decisions no parents should ever need to even remotely think about. These are things you talk about regarding your grandparents or parents. Not good things, not happy things, but in the true cycle of how life is supposed to go, things that are of this life.
So last night after a really crappy night and followed up with a pretty crappy morning, I am not seeing or feeling the light. I am sad. I am overwhelmed and I desire to drink mai tai's on a beach somewhere far away. But because I am a woman of God who knows and truly believes all things work together for the good of those who love him, I know that even these times that I am not shiny and happy, I am still loved and grieved with. And understood for not faking it and maybe even loved a little more for being honest about it all.
It’s hard leaving a post like this. I realize the darkness of it. I realize I am saying things that are only thought about and I am sorry for that. I know that my outlook seems grim, but my heart also knows that we love Lily with a ferocity that is undeniable and we will love her for as long as we get. I will love all my children as long as I get to. No days are promised. Nothing is promised here on earth. We see tragedy happen when innocent kids are sent to school. Life is not fair. Loving others can be the most painful experience we will ever have the pleasure of experiencing. I'm just sharing my heart today as it is fresh right now and things have been brought up to us recently I have been happily blind to. I am sure I can get back to my place of oblivion, if we could get these seizures to chill out. Lily is so healthy. I'd dare to say healthier than anyone else in our house, she kicks a cold faster than any of us. She is a strong little girl. I have to say it's the seizures that keep me in fear. So my praying friends please remember her in your prayers.
I know people will want to share words with me of love and support and I appreciate them so much, I relish in them. But know I am ok. I am just having a bad day. My heart hurts and it needs to heal, again. My heart is always healing and I’m glad it is able to do that. I get another evening with just my two kiddos and it will be what I need. If you are a praying person, pray for Lily to find relief. We are used to seizures but when they attack her one after the other it is a lot on her and it is a lot on us who love her.
Thanks for reading and thanks for loving.