What It's Like to Be Chronically Ill While Parenting Newborns
I know I’ve said this before, probably many times. But being a mother was a lifelong dream. I couldn’t wait to have a child of my own, to be a mommy finally. When we found out we were pregnant with our first baby, there was a scare in the beginning that made us think we were going to lose her. It was the most traumatizing event I have ever experienced.
Here I sat in the OB/GYN’s office crying in front of all the other patients waiting to be seen. The normally somewhat cold front office staff were suddenly filled with compassion as they saw me enter the office. My HCG numbers were not doing well at the time and my doctor was fairly convinced I was going to lose the baby, and worse, she was worried about it being an ectopic pregnancy. My mom sat next to my side saying to me that “It would be OK, you could try again.” But those words stung deep as I knew we weren’t really planning a child at that time. It was something we both wanted, but not quite at that time.
But eventually that nightmare slowly came to an end over the course of a few days when my blood work started going up and finally, they found our beautiful baby in my uterus right where she belonged. All the pain from those few days was lifted as my soul filled with a joy that cannot be described. Finally, I was on my way to fulfilling that lifelong dream. Nine months later she entered the world 10 days early as she had big plans of her own.
I loved every single minute of being a mother.
But then, seven months later one evening in December, after a series of very stressful events, I started to feel a flu-like pain come over me. I remember laying on the living room floor anticipating the worst flu was upon me as I rolled around with an intense body-wide pain.
But the flu never came. The next few days, followed by weeks, then months of an always evolving pain and fatigue left me seeing one doctor to another. “Carpal tunnel” was their go-to initial answer of what was wrong with me. But it made no sense as the pain was not limited to just my arms. My legs hurt. My shoulders in the morning would hurt to the point of me crying to just get up and out of bed. I couldn’t turn my neck myself without using my hands to turn it. My feet started going white and numb. I knew it wasn’t carpal tunnel. Eventually they went with fibromyalgia after my persistence for answers.
Remember, I was navigating through this pain, disappointing doctors appointments and one test after another fairly soon after I had a baby. A baby who grew into a toddler, who grew into a little girl. After being told again and again that I was “perfectly fine to have another child,” we went ahead and tried since we wanted to give our little girl a sibling. In the back of my head though I often thought that I wanted her to have a sibling in case something eventually happened to me.
After a very tiresome pregnancy later we gave our little girl a sister. Dream achieved. Not just one princess in my life, but now we were blessed with two. But during this process I started to really fully believe that all my so-called “separate” and increasing issues were actually somehow connected.
There was something systemic going on and I had to find someone to believe that and give me more substantial answers.
Did I make the right choice? Here I am already struggling as it was to be a sufficient mom in my eyes, and now I’ve taken on this journey for better answers. But ultimately, if I had something wrong with me I needed to know for them.
Eventually after many more doctor appointments and many, many hours traveling out of state we found doctors who really truly believed me and could definitively say there was something systemically wrong.
But now what? It has been 10 years since our firstborn came into our lives. And nine and a half of those years I’ve been fairly sick. Fairly unable to do a large majority of the things I would have liked to do with my babies. And even on my good days when I spend it trying to clean and catch up and make a nice dinner and have quality time with them, by the time the day turns to evening I am not just exhausted, but left struggling to keep going. I have actually forgotten what it feels like to not struggle anymore. I have forgotten what it feels like to just open your eyes in the morning feeling good.
One thing about exhaustion is it lets the negative doubts in. The thoughts I often fight hard to keep away, well, when you have nothing left physically inside of you, those negative thoughts sweep right in the moment they see a weak spot in your armor.
So while I am utterly grateful for the answers I now have, if we’re being honest, I am also slightly bitter. Bitter that the days of mothering my newborns are blurred with pain that makes it hard to remember what it was like when they were babies. I remember the feeling of pure love and happiness to be their mommy. I remember this was the greatest gift I had ever been given. But I also remember the tears when I tried to get out of bed every morning. I remember people not believing me.
Now in this present day I am reminded daily of what it is like to be a parent with chronic illness. I am so tired. Tired of the pain. I am tired of the day-to-day grind of pretending I am normal to only disintegrate into the night.
I am really tired of people not getting it. They think they do, but I honestly can’t blame them that they don’t. After all, we only have our own experiences in life that ultimately affect our perception on what others are going through.
So I need to accept that my own friends and even family members just might never get it.
While I often like to end my thoughts on a positive note, the truth is that sometimes it is OK to not always feel positive. It is OK to admit how hard and difficult a situation is. It is OK to say this sucks on so many levels and it is just not fair. Sometimes the world needs to see and really see what it is like for people dealing with these issues on a day-to-day basis.
And sometimes we simply need to feel the darkness in order to appreciate the sun.
So tomorrow when the pain is less and the sun is a little warmer I’ll attempt to once again embrace the positive and keep moving forward.
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