Sunday, January 15, 2017

The dark side of guilt with chronic illness.

Being a mother brings with it the most amazing feelings. It has an almost out of body like feel to it. Thoughts of how this little person could amazingly be yours. 
A real live little human who is breathing,  growing and simply stunning in every way. 

Being a mother means you’ve begged time to stand still. You’ve watched the clock only for time to seem to fast forward in a way that cannot be controlled. You’ve spent hours breathing in the smells of your babies, hours gazing on their little faces,  memorizing their each and every detail. Knowing every freckle, every dimple and even the very length of their long eye lashes that you secretly envy. How could they be so perfect?

I felt all these feels. I owned them. Embraced them. Breathed each and every emotion in. 

Time argued fiercely with me, time demanded to go on. It demanded to take my newborn into the next stages of life. It demanded they grow faster than I thought possible,  that they go from helpless to crawling, from crawling to walking and to eventually becoming their own little person full of their own unique personality making decisions for themselves. 
Time refused to stop. 

When I worked and the workday came to an end I would immediately rush to pick my babies up. Another minute could not pass without seeing them, to once again breathe them in and feel their arms tight around my neck. 

Then something happened. 

Time caught up with me. Time demanded that I know now that all the years as an exhausted and fatigued teenager had been there for a reason. 

Time now nearly stopped. Time stood still as pain took up a permanent residence in my body.  Days turned into weeks,  weeks into months,  and months into years as I struggled to understand what was happening. Why was my focus on my babies being so blurred with pain? Why did I go from begging time to stand still to now begging it to hurry up? Hurry up to get answers. Hurry up to feel better. Just hurry up. 

Pain is a tricky thing. It shifts your focus to just getting past that moment. You wait impatiently for it to pass. But while you are waiting for the endless and chronic pain to pass in what seems like a frozen moment in time,  life keeps going for everyone else, including the babies you begged to slow down. 
But suddenly with life wearing you down with the exhaustion of an endless flu you find yourself almost wanting your babies to grow up just a little bit more. To not cry so much. To be able to express themselves with words and not just a display of emotions. To be able to soothe themselves just a little bit, as you don’t have much left in you to soothe them. 
Yet, you do anyways because they want you. So in pain and in exhaustion you give your babies what very little you had left.  And what you had wasn’t what a typical parent has left. You were already empty, but you poured the last few drops out for your babies. 

Making the greatest joy you once had of parenting now the biggest struggle you could never have imagined. 

Your thoughts shift to a time when they maybe won’t hang on you quite so much. When they won’t cry so much. You wish them older and yet while you are doing that you wonder what has become of you -because you know deep down inside that time already moves way too fast. Way-too-fast.

Now their childhood is becoming a blur. Memories are mixed with thoughts of pain. Though there may be many wonderful times and good memories are still being made for which I am beyond grateful for,  it’s so often tainted with a flu like feeling. 

So with all this being said, I realize there is a great sadness behind these words. There is a bitterness that lingers in the air.
Bitter that one of the greatest joys I have ever known had been so abruptly altered for me. Bitter that I couldn’t completely enjoy my babies without the heaviness of guilt hanging over my head. Bitter that there are days I need to rest and my babies need to be away from me. Bitter that their mom can’t be just like their friends mothers. 

Yes, I put on a good show when I have to,  I can usually pretend this chronic condition doesn’t exist when it calls for it but not without a cost. Pretending to be normal will almost always result in a need to beg my body to forgive me. 

But I’ll beg my body to forgive me for the rest of my life if it means making memories with my babies. 

However, I can’t help but wonder what life is like as a mother without endless chronic pain and exhaustion. 

I can’t help but think what life would have been like if this illness just held off until my children were grown. Would I feel less guilty? Or less bitter about missing out on too many moments?  Less torn between my bodies demands for rest and the insanely strong motherly instinct to be there with my babies? 

Or will that feeling regardless of their age never go away?

So if you are a mother with chronic illness fighting the same guilt I am, please know you are not alone as I am not alone. When we are feeling heavy with feelings that only a mother with chronic illness could understand, reach out to others that understand. 

In the end, we simply have to remind ourselves that 
love is what matters. 
To take the moments we can and soak it up like a dry sponge. 
Let love fill the gaps of guilt.

Love is after-all, what the heart remembers the most.