Moody

Sitting with my 8 year old disabled son on my lap as I listen to the solo performance of Breath of Heaven, I feel the tears fighting their way to the surface. I hold my son because the seizures seem to avoid him if he feels comfort from an embrace of love. The soloist’s voice carries my tears closer to the surface as I identify with the pain, struggle and loneliness of being a caregiver. I adjusted his shirt, his position, searching to slow my breath and keep the tears back.

As she sang, “I have traveled many moonless nights with a babe inside, and I wonder what I’ve done.” The truth broke through my wall of protection.”You’ve chosen me now, to carry (my son). Iam waiting, in a silent prayer, I am frightened by the load I bear. In a world as cold as stone. Must I walk this path alone? Be with me now. Be with me now.Breath of heaven hold me together.Be forever near me….” My tears rushed and broke my walls. I struggled to keep them under control.The words from the soloist’s song were so true. My role in caring for my son gives me the knowledge to know the nativity story at the most personal level.

I sat in the third row, clearly seen by the pastor, yet trying to hide my tears. The journey is so long, ardorous and without rest. My son’s full rehabilitation still not within sight. “Breath of heaven, lighten my darkness, pour over me your holiness. Breath of heaven”.

I continued to listen to the words and know them as my own; “Do you wonder as you watch my face, if a wiser one should have had my place? But I offer all I am for the mercy of your plan. Help me be strong, help me be, help me.” I couldn’t slow the tears because it was all true. The pain, the wonder of my angel’s miracle is real too. He’s almost walking by himself. He wr

My middle son turned to me, seeing the tears and asked me what was wrong. I replied, “I have a headache.” He hugged me. My mood lifted. The soloist sang, “Breath of heaven, hold me together, be forever near me, breath of heaven”. My encouragement taken from the words of a song and my son’s embrace, I stopped the tears.

Not knowing a fellow parishener was watching, she came over to say, “You’re  the best mother, I’ve ever seen. You care for him so well.”

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Growth

Growth comes in many forms and contexts. The strongest growth experience is the one which requires inhuman strength and achievement. If you had a child with an acquired  traumatic brain injury which requires 24/7 nursing, you’d probably think, it will be all fine. The nurses will come and take care of him. This is not always the case. I’m facing my sixth night in a row of a twelve hour shift until the morning nurse comes in to relieve me; if there is one. I do this and get my boys up for their summer activities, and make some mommy-son time. When do I sleep? I haven’t figured that out yet.

Just the other day, I was pulled over for no staying in my lane. I informed the officer of my current circumstances. What would you do? The officer promptly reminded me that she was not in those circumstances and that I need to think about the safety of my son by staying within the lines and driving more carefully. Growth is what you discover about yourself when extreme circumstances arise as life happens. I guess I’m growing more than I know.

I know these circumstances are not typical. Not everyone faces what I face.I know there are other parents who struggle daily with caring for their disabled child. I keep telling myself, this too will pass. As each night of nursing my son to watch for seizures which may break through when I least expect continues to become more and more frequent, I have to keep a positive mind. I have to be hopeful. His quality of life depends on my positivity and determination to find an end to the suffering. I am his strongest advocate. With advocacy comes more growth.