The Why(s) of Life

Bleary-eyed I am pacing the hospital hallway at 3:30AM chanting quietly to myself and sobbing. Children are crying in rooms with closed doors. My baby is one of them, while the doctors put an IV in her little arm.  I am wondering why is this happening.

As a mother, there is nothing worse than your child being sick, hurt, or in pain. Nothing. Why is this happening? I kept asking every being I ever prayed to—why? Only to realize the answer to that why is another why with no definitive answer.

The back-story is that my daughter was having infantile spasms. At first, we were unsure of what she was doing and why. We took a video and went to the doctor. That night we were driving to the hospital. I don’t like hospitals. I don’t buy into Western Medicine. However, Western Medicine serves a purpose at times especially in this case. After many tests, ultrasounds, an MRI (I think this is by far a harrowing experience. I sat in the room with my daughter, and when I came out of there I felt like my entire being had been electric shocked and I was shaking. Maybe the best part was for the techs watching me do pranayama, braid my hair, bumblebee breath with full on digital actions, and try to not go mad in 25-minutes.), Visual EEG (They all probably loved that as I would curl up in the crib to breastfeed my baby. It was full on acrobatics.), EKG, and numerous doctors visiting until we finally received a diagnosis. My daughter has been diagnosed with Tuberous Sclerosis, which is a rare genetic condition that causes benign tubers or tumors to grow. Hers are in her brain causing seizures. Why would this happen to an innocent child? Why? Honestly, I am still struggling, because it is very unfair and I can’t seem to understand. Yes, I am pissed off at the divine for this happening to my little girl.

We have all been there before. Trying to find answers to why something horribly terrifying and heartbreaking is happening.  Sometimes we receive an answer and other times we do not.

My friend called with the answer. The most perfect answer at that moment. This is a divine orchestration she said, and part of your daughter’s path and something for all of you to learn.

Divine orchestration. I sat with that in silence listening deeply.

The next day my father gave his wisdom, “Love trumps all.”

In these moments it is hard to think that suffering can be divinely orchestrated. We may not know and ever be able to understand why something happens. What I do know is that no matter what happens love helps us to overcome adversity and that adversity strengthens us.

All we have is TODAY and it is divinely orchestrated.

**Prayers for my baby girl and our family are welcome. For it is the power of prayer that has gotten me through as well as breathing, mantra, pranayama, practice, chocolate, the love that is overflowing from our community, and my daughter’s smile. **

 

14 thoughts on “The Why(s) of Life

  1. Beth,
    My heart is broken for you and your baby girl as well as both your families. I will keep you and your little one close in my thoughts and prayers!! XO Erin

  2. Beth, early detection may have been the blessing here. I know a with a few people with tuberous sclerosis. So smart of you to video tape her. You are a wonderful, insightful and intuitive mother. I have no doubt that you will make all the right decisions as you and your family move through this confusing medical process. Sending you all love and warm thoughts. xo

  3. Beth, it may not seem so, but early detection may have been the blessing here. I am very familiar with this condition. You were so smart to video her. Despite the diagnosis and the uncertain details that are ahead, I have no doubt that you will continue to make good decisions on your daughter’s behalf. You are very insightful and strong. Sending you love and warm thoughts. Please keep me posted. xo

    • Alyssa,
      Thank you! I had never heard of this condition during my years as a special ed teacher. I am glad that we caught it early so that we can do what we need to do to help her. I hope that you are doing well. Love to you too!

      • Beth, I know quite a bit about this rare disorder and the one clear thing about it is that there are a varying number of outcomes and degrees of tuberous sclerosis. Many kids go on to live very normal lives with as needed treatment/removal for some of the growths depending on their location on or in the body. There are lots of treatment options, so aim high and keep the healing thoughts going. Something tells me, if she is anything like you, she is a ‘tuff nut’!!

  4. Beth,
    I can’t imagine what you are going through.
    My heart goes out to you and your family.
    Strength and peace is what I wish for
    You.
    Love,
    Daniela

  5. Thank you for writing and opening up at a time when it could be so easy to keep it all in and draw the curtains. You are brave and amazing. Thank you for being a beacon to all of us, even in a dark time for you. Thoughts and prayers to you, your daughter and your family.

  6. I’m thinking of you Beth. Thank you for sharing your process through writing. It is so hard to face down these Whys. I’m grateful you have trusted and wise friends and family near by to support you with words, thoughts, touch. From further afield I send love and light and confidence in your ability to navigate this unexpected, undesired crook in the path.

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