Saturday, April 15, 2006

 

How I Get Through It...


I excerpted this from an email I sent in response to how I was able to cope with the emotions I experience dealing with Sophia's congenital heart defect. I wasn't originally going to post it here but I thought others might get something out of it. But, I especially needed to post this as a reminder to myself.
It isn't very polished, being an email after all, but here it is just the same.
The suffering we experience in life is brought about by our inability to face the reality of a given situation.
We hope for the best for our children. We want them to be healthy and we want them to be happy. We want them to realize all our dreams and expectations. By clinging to those very reasonable hopes and expectations, we are unable to cope with the obstacles set in the way of attaining, what seems to be, a very normal life. But, what we fail to account for is change. Nothing is permanent.
No child is healthy and happy all of the time. No one escapes the suffering of sickness and no one is immortal. These things are part of living. We accept them in the proportions we expect them to come in. But are unprepared for the times when they fall outside our expectations.
I remember once a friend was telling me about how their daughter had to have immunizations earlier in the day. They were so upset to have had to see their child suffer from getting shots. In contrast to what we have experienced this doesn't seem like a big deal. But ultimately, suffering is suffering.
I believe it is our natural response, as human beings, to have compassion when we see suffering. This "natural" compassion can however become confused by emotions like fear, anger and jealousy. We replace naturally arising compassion with concepts like justice and fairness, and begin to question why and what have I done to deserve this. The reason I say these concepts confuse our natural compassion is they presume that some suffering is warranted and other suffering is not. Again, I say suffering is suffering.
I look to Sophia to remind me of this. She isn't aware that her situation is difficult. She just lives it while she can.
We should try to do the same. In any given moment, Sophia may smile, cry, sleep, eat, breathe, poop, whatever. These are all part of her existence. I also experience many experiences, thoughts and feelings. If I can accept the impermanence of these experiences, thoughts and feelings and let them pass like clouds in the sky, I become more aware of the moment, the reality of the experience. I am not mired in the "could-haves" and "should-haves" of what might have been. I can accept that they are not real. I can experience the "isness" of what is.
The moment we are experiencing is all there is. I may classify it as a good moment, a bad moment, or something that I have no strong feelings about. But ultimately it is just a moment. The judgment we make on it is ours. We may long for a moment passed or worry about one approaching. But, our worry and desire for it to be otherwise just causes confusion and is of no help with ours or our child's suffering.
This leaves acting openly and with compassion in the moment the only useful choice in not only this but any given situation.
In short, to quote George Harrison, "all things must pass". We have to let go of fear and anger to make room for joy. The joy will pass also, but it will be back.
These kids are such a blessing. If you are open to it, you will learn lessons about love and compassion you might have otherwise missed.
Before Sophia was born I had the aspiration she would be strong and wise, and would influence people to be compassionate and love one another.
Her name, Sophia Alexandra, means wisdom protector. She has exceeded all my aspirations for her. As a consequence her heart defect seems less significant.

Thanks for indulging this little aside. I hope it wasn't too out there for you.
It is this way of seeing things that makes it possible for me to cope with the ever-changing highs and lows of having a child with health challenges.
Any comments are welcomed. I would especially encourage other CHD parents to share there thoughts on coping with the challenges we all face.
Comments:
I hope that you're in a place that you can clearly see the little bodhisattva before you. With no words she's taught so many, including people whom she'll never meet in person. She is dharma. Dharma in a diaper. Appreciate the beauty in the moment. What better teacher is there? It's difficult not to get overwhelmed by all the data and dreaded possibilities, but try to just be thankful she's here.
 
Wonderfully written. I am a mother of a CHD child who is currently 3 months old. I am a muslim and believe that its all in God's hands. At first there was a lot of anger, frustration, confusion and resentment. Then I realise we are no one to question God's reasons in these things.

Pray and have faith in his wisdom. And meanwhile enjoy the moments with little Sophia
 
Beautiful! I often feel being given Ethan was done so we as parents could benefit from what he has to teach us about life-and how much we would have missed out on without him. Without his medical issues-we never would have met such amazing families, such as yours, or learned to love and accept so unconditionally, as well as never taking anything for granted in life.
We will be thinking about Sophia and her possible upcoming surgery.
She is just gorgeous in her park pictures!
Kari and Ethan
www.ethancharles.com
 
Prayer and faith is what got my family through. And gratitude. When we honestly thought Jacob wouldn't make it (we could read it in the ER people's faces and on the face of the hospital chaplain, etc.) I just remember feeling gratitude for what we had had with our precious boy and for the honor of being his mother and knowing him. Of course we felt immense gratitude after the long fight had been won. Even though there were mind numbing moments of fear and frustration remembering the blessings that we had chased the fears from our minds. Even with the bad there is so much to be grateful for, I found it so healing, though definitely not always easy.
 
Michael, thank you for sharing this with us. I have a hard time not dwelling on the possibilities and I believe it has cost me some precious moments that I should have been spending in the now with my beautiful little boy. I need to post that quote from George Harrison in a place I read it daily as a reminder to myself to, "make room for joy." Hoping Sophia is doing well, she remains in my prayers.
 
I can hardly stay away for a day from my sweet little Sophia. She brings a smile and out loud laughter to my world.
When I hear myself complaining about a small ache or pain I whisper a thank you to God for reminding me how little that pain is in comparison to Sophia's discomfort.
She cries when she is hurt but only for a short while and then she forgives and starts to play again, such strength is hardly ever seen in an adult. Maybe we haven't learned in our years to let go of the pain when it is gone instead of dwelling on how it hurt 5 minutes ago.
Sophia makes me appreciate life so much more than before she was ours, the wisdom she has is very old even though she appears very young.
We teach her to talk and walk and even eat and she teaches us much bigger things like compassion,love and forgiveness, we are perfect in her eyes and she never stops showing us how much she loves us.
I believe she is an angel here on earth to bless us with all things good and pure.
Too much rambling, hope it makes sense.
I love her so.
 
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