These last few weeks have been hell in some ways. Wawoo’s tone is out of control. She arches non stop and her meds seem to do nothing. We are trying new things and no results so far.
Seeing her sweaty body writhing and her arms flinging around out of control is so difficult. I just want her to be peaceful and to be able to use her arms and hands without poking herself in the eyes a hundred times.
She is only peaceful when I hold her. So I hold her and my back is breaking from the strain. My mind is breaking from another strain.
Its at times like these that I lose sight of her future potential I can’t see how she will function if all she does is close her eyes and writhe in pain. How can she attend enough to learn things?
This is when I have to trust in God. I try to breathe and just focus on her immediate concerns and trust that He knows I am doing my best and trying my hardest. Trust that although I don’t do enough for my own relationship with Him I am still loved and cared for by Him. Krsna, I put my life in your hands as I can see without a doubt I am not in control no matter how hard I try to be. I just simply ask that You show me the way in times like these when I feel lost and tired.
What a doll she is. Although all this horrid stuff is going on in her body. She always has a smile and a laugh when I hold her. We might have identical black eyes from a run away movement but we know how to laugh at the dark humor in our lives. She is my daughter for sure 🙂
For 3 years of Wawoo’s life we have been in flight or fight. We have been battling life threatening problems, sleep deprivation( for her and us) and trying to get her to hold her food down. It was “easier” to just be in that mode. To just meet her most urgent needs.
Now she is healthier and happier. And that relief came with a wave of craziness crashing on my head. Suddenly I felt overwhelmed with the responsibility of making sure she was getting the stimulation she needs and deserves. Does this feeling of inadequacy ever go away?
I know most parents have this feeling. But how do I describe what I feel? somedays are just mentally so hard. Seeing her sitting there and struggling to get a toy to her mouth and poking herself in the eye instead can be so hard. I cry. A lot.
Some days I am just unable to do more than just meet her bodily needs. I know there is so much stimulation to be done but I just sit there self medicating myself with tv shows and food.
How can I describe when I look at my daughter ,who is limited by her body and knowing that she wants to do so much, makes me feel? Despair,compassion, love, pride.
Pride at her determination. She is such a trooper and works so hard. Always ready with a smile to light up someone’s day.
Under that little struggling body is a soul, bright, beautiful, intelligent and kind. This soul is such a blessing to me. She brings meaning to my life, joy, love.
She makes me look deeper into myself and draw on strength I didn’t know I had.Where would I be without Krsna? I know that as hard and heart wrenching life is I would be lost without God to turn to when I need Him. He is always there guiding me and also just waiting for me to turn to Him when I choose to think I am in control. How patient is Lali and how patient is the Lord?
I see little bits of eternal truths in my everyday life with her. I know that not just her body needs care but her soul does as well and I muddle along and try and slow down my ever racing mind to give this precious child of Krsna’s the love and support she needs in this life and the next.