Tuesday, July 21, 2015

She Ain't Heavy . . . But I Can't Carry Her

Growing up, I often heard people say that one of the top things we take for granted as humans is our health. Being a person who is somewhat preoccupied with gratitude, I tried not to let that become my tendency growing up, especially because I fully realized that I was blessed with an abundance of energy that many other people had to work a lot harder than I did to have.

Since coming down with the symptoms of my autoimmune disease, I find that I really miss my old energy, and I miss having skin that doesn't look rashy and sunburned, and I miss knowing that all is well on my insides. But all that pales in comparison to how much I miss having the physical energy to hold my daughter as much as I want.

Before I knew what was going on with my body, I often felt guilty because I just felt I couldn't hold Raven one more second without my body collapsing--trips down to the car with her in her carseat would completely wipe me out, and I would be left gasping and kneeling over her in the backseat, unable to have the energy to pull myself back out again. It was when my arms and legs started shaking when I carried her from room to room (and I began to clutch her even more tightly because I feared that I might involuntarily drop her) that made me realize that my muscle fatigue was out of control and that it was something much more serious than me just being a tired new mom.

Since I'm still in the process of trying to figure out exactly what the trajectory of this disease will be and what my treatment options are and what I can do (if anything) in the midst of this challenge, my mind--ever searching for explanations and reasons--has tried to pinpoint what I should be learning from all this.

It's far too early to really nail anything down for sure since I am in a territory uncharted and unplanned, but I can think of two things right off the top of my head that I've learned from this experience, wanted or not---

1. It's good for me to learn how to ask for help.

My whole life I've been independent, self-sufficient, willing to do most things for myself, by myself. Marriage helped me to get over the extreme of that condition, but motherhood could have easily pushed me back into it with the mindset that I was the mom, that I was in charge of the nurture of my children, that the responsibility for their wellbeing was mine

Having unpredictable muscles that sometimes barely allow me to hold her long enough to feed her has forced me to learn to ask for help, which has been deeply humbling. It is humbling to ask for my brother to carry the carseat 30 feet to the car for me, it is humbling to beg Matt to come take the baby to burp her because my back can't handle another second. 

But it is beautiful, too.

It was beautiful to watch my daughter being carried by my sister on the family hike we took to Tony Grove the other week in the midst of our family campout. It was beautiful to watch my family rally around me with offers of solace and support as I divulged the diagnosis to them at the beginning of the trip. It was beautiful to realize that parenthood is not about being the Sole Provider of Everything for your kids--it's about learning to open the door so that others can help my daughter become who she was meant to be, too.

2. Even though I tried not to take my health for granted before, now I REALLY appreciate the good days.

And there are a lot of good days, especially now that I'm taking some corticosteroids for my condition.

There have been days when I can hold Raven high above my head and hear her squeal with delight as her legs flail into the open air above me. There have been days when my trip to the grocery store for cherries and milk and chicken hasn't left me so winded and tired that it's all I can do to keep my eyes open while my baby's eyes are open, much less try and interact with her---now I can come home and unload the groceries and play with the baby and make the dinner and even (sometimes!) do the dishes.

It is good that on some days, I even feel close to my old self again, dreaming of running marathons and taking dance classes and taking the baby on hikes---it's those days that give me hope that although this condition is permanent, it doesn't have to be limiting.

But for days when my body feels alien to me and my muscles cry out for relief and my energy allows me to do little more than try and stay awake, it is good to know that I have so many people in my life that I can rely on to help shoulder the load, even if it ain't that heavy. 

Today, I was tired when I started to write this, and my arms had started to feel the getting-all-too-familiar feeling of complete and utter burnout.

And now, finishing up my thoughts, I am still tired and (additionally) covered in drool and cottage cheese spit-up...

But it's because I was able to hold Raven while writing up the last half of this post.

And that's something to be pretty darn grateful for.


  1. Tony's Grove looks beautiful!

  2. I'm sorry you are going through this. I am not even a parent yet and I don't have an autoimmune disease, but I have been in four car wrecks (in a two year period...) and experience a lot of chronic pain because of it. It was really eye opening for me to have to slow down, take care of myself better, and to be happier with having fewer plates spinning. It made me realize I was doing too much before.

    I love this: "parenthood is not about being the Sole Provider of Everything for your kids--it's about learning to open the door so that others can help my daughter become who she was meant to be, too."

  3. I'd like to give an AMEN to this post. I still have a really hard time asking for help, but i've learned that people want to give help. They love you and want to feel like they can do something to help; that that's a really good feeling.

  4. You have a very nice way of putting how difficult it can be to have a chronicle illness. :)
    Which is supposed to be a compliment, because it is very hard to really be thankful for the little things that most people take completely for granted.
    I am chronically ill as well and i am still learning so many things that you talk about in your post, even though i have been sick for well over 10 years now. I still have so much trouble asking for help, for example. and it is refreshing to read about another person that has problems asking for help even though it would be gladly given.
    What i do everyday is to remind myself of all the things that i can do and that really helps me a lot to stay positive and get through the especially hard days.
    And i am sure that your cute daughter helps you a lot as well :)
    I hope you will find a way to make your illness better or at least more comfortable for yourself and that you keep your positively up about all the things that you can do.
    Thanks for sharing your struggles :)


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