Monday, July 11, 2011


Grief is a difficult emotion to "work through".  Mainly, because many people, including myself, don't want to not grieve...because the grief is the feeling in your heart, that hole, that void, that place where the memory of your loved one now lives. 

However, along our journey with Caleb, one thing was apparent to me, we grieved him as he lived.  With each loss, we grieved.  We grieved with the diagnosis of PDD-NOS (Autism).  We grieved when he had his first seizure.  We grieved when his seizures continued to persist.  We grieved when he lost speech, when he lost his ability to walk, when I had to buy his first wheelchair, when his seizures became 100's every day, when he lost his ability to eat, when his stomach would not handle his feeds, when he had to have a GJ-tube placed, when his feeds had to be continual-and he lost weight.  We grieved terribly when he developed aplastic anemia, and yet during all this....during the grief, through the grief, we chose to help him live.  We hurt for him more than for ourselves.  We hurt for his quality of life, we wanted him to be happy and not to hurt.  Grief is loss. And you can grieve the living. 

If you have a child with special needs, you grieve.  Many days are filled with happiness, and through the everyday struggles you learn to appreciate the little things- the real things in life that matter.  But in the back of your mind, there is that hope as a parent, that somehow things could be better, somehow things could improve for your child, and you grieve that loss for them.

Caleb never grieved.  He didn't feel loss- he adapted.  I was so upset when he couldn't eat that for 2 months we did not eat where he could see us.  I didn't want him to "miss" it.  I would give him an empty tube to hold as I would bolus in his formula.  One day, he crawled to the kitchen and pulled up to the counter and instead of standing in front of the microwave (his indication that he wanted microwaved bacon) he grabbed the empty tube.  I cried.  He knew that this was his was of being fed- and he was right, it was time for his feeding. 

Children are so amazing.  They are stronger than we are as adults.  They adapt to situations when we ourselves are grimacing in anxiety and hurt for them.  It is okay to grieve the losses for them, that is what parents do.  However, finding a way to help them live in whatever way they can, a day at a time, that is the job of a parent of a child with special needs. 

Find a way to get through each day.  Find at least one moment, one special time with your child to just be "mama" or "daddy" and share joy with your child.  I know some days for us it was watching Caleb's beloved Barney video for the 5th time- but if it brought a smile to his precious face, it was worth it.  Some days a swing (one of the adapted swings) at the park would bring a smile, and some days the hour long pack up/drive/unload only made him agitated-but it was worth the try. 

Loss happens to everyone in life.  Along the way we all grieve something or someone.  Finding a way to overcome that loss and to be determined to find a way to make the most of life- there is the key to overcoming the feelings of despair. 

This Friday marks 6 months on earth without our Caleb.  We no longer grieve for his losses, for he has gained the glory of Heaven, the riches of health, and his spirit is no longer trapped in an ill body.  We know that the grief now is purely for ourselves.  The loss in our hearts, we fill with our memories of Caleb and our love for him that will continue to help us - to live. 

1 comment:

  1. This post is so beautifully written. We too have a son with epilepsy and live on the grief roller coaster that you spoke of...days of utter sadness and days of pure joy. Thank you for sharing your thoughts.