George Harrison once said “All the world is Birthday Cake, so take a piece, but not too much.”
What a perfect quote for a beautiful, yet blustery fall day where I am thinking about an absolute impossibility before me. My firstborn is now 20 years old. There is no way for me to continue to try and pretend she hasn’t grown up completely.
I know all parents experience this feeling. Multiple times in their children’s lives. But, my experiences battling a multitude of tick borne diseases has shown me that for parents who are chronically ill it is even harder. I have no idea what is happening in my life beyond the short scope of Dr.s appointments, shortened shifts at work I am so grateful I can still manage at all most days, and what my family manages to tell me while I am sick in bed or stuck to my couch that I actually manage to remember. This is the world my illnesses has left me stuck in. I am stuck wishing things would slow down and I could stop missing it all or forgetting it all and it all just spins away impossibly fast no matter how badly I wish it would slow down.
Before I contracted these tick borne infections and parasites that are taking a very long time to battle, I can remember always feeling like all 3 of my amazing children were growing way too fast. Almost all of us do, right? Few of us have our children grow up and begin to lead their own lives and think oh thank god that’s over. We wish they were still small. We wish there had been more time. But as a chronically ill mom, my children’s worlds (and everyone else’s as well) spins away so fast. My “baby” as I will always think of all of my kids, is now an adult. Her childhood is completely behind her. I can no longer deny this truth. Yet, these last few years since I got so sick, I have missed almost all of it.
Before my illness, I was the kind of Mom who was incredibly involved in my children’s lives. We packed life full of as many activities as we could afford. We spent time together, I never missed a sporting event unless work forced me to, we spent time in nature, hiking, camping, and appreciating the beauty around us. I may have always had trouble remembering little things because I was often a busy and harried mom, but I always listened to my kids, and I always remembered all the things that mattered to them as best as I could. Now we can have conversations when they try to fill me in on how life is and I have trouble remembering it at all, or I remember a line or two of conversations and then try so hard to remember the rest but just can’t do it. It’s become a bit of a family joke that mom can’t remember anything. They are good kids, but they have surely all used a sick mom to their advantage or a mom who can’t remember. But isn’t that their right? After all, they lost their amazing mother to an illness that should have been treated before I even got so sick. Before they lost their mom.
Typing this part is scary, as I am sure anyone reading this who suffers from severe chronic illness knows. For me, the scariest part is not saying the words. I totally own them. But it’s the reaction of friends and family who sometimes read these types of words without realizing how sick I was and suddenly become concerned. Please do not do that! I have no intentions of giving up this fight and letting some little bugs ruin the plans I still have for my life. I am about 8 months into finally getting proper treatment and ever so slowly things are improving. I will win this war. I’m not giving up. But, before I finally found my Lyme Literate Medical Doctor (LLMD) and began treatment, I was not always sure I would make it. There were days I could not drag myself from my bed to make the short distance to my bathroom. My partner would have to pick me up and carry me. On those dark days, as anyone who has experienced them can tell you, you have time to evaluate life. It’s an honest evaluation in such a situation. Always. And in the middle of that horror, there is something amazing. I know beyond a doubt that I did it right. When I was hethy, I know I was always the best parent I could be. Of course, there will always be more I wished we had time or finances to do. More places to travel. More beautiful things to see. I can only hope we may still get to mark of some of the things I think we missed, that maybe I will get to take my kids on one more fishing trip or one more camping trip to suffer in tents and struggle to find kindling for the fire or something to eat. They may be grown up in the case of my oldest or almost in the case of my other two, but they know there’s never an end to learning, or living life. They learned the important lessons I always wanted them to.
I am not just an average mom bragging on my kids. Everywhere my kids go, people tell me how awesome they are. Author E B White once wrote the beautiful line for Charlotte the spider, “This is my magnum opus, my great work, the finest thing I have ever made”. My kids are certainly mine, as as I mentioned, today my first “Great Work” turned 20. I couldn’t be more proud of the woman she has become.And I know she knows that. I know you are wondering where the Happy Birthday is or how much of my brain those bugs have eaten by now. But I am getting there, I promise. It just takes longer circles or repetitions.
My amazing daughter and I fight about very little in life. It is an amazing miracle that she has not often disagreed with me. But in this, we have a huge dispute. Concerning parenting when chronically ill. She believes I am in no way less of a mother than I was before the ticks invaded my bed. And no matter how hard she tries to convince me otherwise, I know she is wrong. There is no way for me to be the same mom I was from my couch. I know I still do the best I can, but that is not much these days. One day, I hope this changes, until then, I grieve for the parents my amazing children used to have. Any parent would.
I share this story here, in the hopes that any other chronically ill parents might be moved by a poem my daughter wrote me. This beautiful, grown up child of mine, is an amazing poet. And she once wrote a poem that will make you cry. Perhaps a lot. But her birthday seems a good day to share the beauty of this one with you. I have her prior permisssion. And she makes it awfully hard to feel guilt about my diminished abilities. Almost impossible. Perhaps it will help someone else feel less guilty. An appropriate tribute to her birthday.
Prior permission is only for the poem. SHHHHH. don’t tell her I used a baby picture. No permission for that one. Wooops.
My apologies this is in 3 parts, I don’t know how to stitch them together.
To the beautiful woman who wrote me this amazing poem: I hope this is the best Birthday you have had yet and that you live a twentieth year full of life and much happiness!
Now make sure you eat plenty of pieces of that cake that you had to bake yourself! But not too much.