A Ray of Sunshine in the Storm

Last Friday my son turned five years old.  On that same day, my husband, Jim, and I decided to start grinding Jim’s food in a blender so that he could get bollus feedings through his feeding tube.  Jim is having such a hard time breathing lately, and eating is so daunting.  It can take Jim an hour to eat a very small amount of food and the energy he burns to accomplish this could be better spent.

It was a surreal moment.  One of my sweet “boys” becoming more independent, blooming, beaming and thrilled to take on the world as kindergarten is looming around the corner.  My other sweet “boy” becoming more frail, more dependent on others, and sinking into another round of mind battles with the devil.  For my part, I continue to be volleyed back and forth between these worlds of vitality and youth and trying to be the best mom I can be for my kids and the world of helping my ailing husband, being his cheerleader and reminder to stay the course and that he will win this battle.  I go from being “yeah kids”, smiling at both my son and daughter becoming their own person, to “fight Jim” and pushing with everything I have as I fight back tears and the desire to fall apart.

It comes down to having no choice.  I don’t consider myself a strong person; I am simply doing what any mother and wife who loves her family dearly would do.  I do the best I can and I refuse to believe anything but that Jim is on the overall upswing toward health.  I could focus on negative reports from the doctors, negative comments from a well-intention friend, or a look on Jim’s face as he is fighting to keep positive.  But why would I do this?  What would it really accomplish?  There is something good in there, regardless of the bad.  Why would we not grab it and hold on to it for dear life?  This one ray of sunshine in all the clouds, hail, soot, and lightning bolts is mine.  It is what keeps me sane and what allows me to pull myself (and my family) back to a path of my own choosing.

Yesterday afternoon my son had a gathering at his new school with other rising kindergarteners.  Usually a very open and engaging child, he became reserved as he moved away from the crowd and propped himself up against a playground toy.  My heart broke for him as I watched him from a distance.  I didn’t do anything for awhile.  I wanted him to be able to try to grab his ray of sunshine, maybe realize something or have a burst of confidence and go engage with another child.  I could only see sadness for minutes and so I eventually walked over to him and talked with other kids around him and eventually the kids started kinda playing with each other.  Really they were playing next to each other.  But it was a start.  Then we moved to another part of the playground and my son said “I want to go home.”  Fortunately another mother there said something about her son playing ball a few feet away and we all moved over there and my son started actively playing with two other boys.  He was smiling, he was engaged, he seemed alright.

On the way home, we talked about how he met some friends and that his new school was really cool.  He remarked that his only friend he was going to have was a boy from his pre-school who was to go to this school the following year.  When I reminded my son of this, he frowned.  He had forgotten and now was sad all over again.  I then talked about our nurses who come to our house to take care of daddy.  My son seemed confused.  “You know when a nurse first gets to our house, it is a little strange for everyone.  The nurse feels out of place and we adjust to another new person in our house.  But eventually we have a new friend who is taking care of daddy.”  My son perked up in his car seat, and replied something like, “yeah mom, I know, you have to be nice to people.  It makes all the difference in the world.”

I think he got it.  I think he was reminded that he needs to consider the good in the bad.  The nurses are around to help daddy.  People are nice to one another when times are tough and this can really help tremendously.  I hope he is able to recall this ray of sunshine or another one of his choosing when he actually starts kindergarten in another week and a half.

Jim too seems to be rebounding again.  His spirits are a bit better.  We are planning on going to a Disney on Ice show in December.  We haven’t been out as a family in over a year.  Jim needs to get much stronger before he can accomplish this feat, but the show is months away and he can do it.  For now, the flyer for the show is posted on a bulletin board in his room.  He sees it everyday and he can hopefully see the little ray of sunshine coming from it.  If he doesn’t, I will remind him quite often that much larger rays of sunshine will be waiting for that day and both our son and daughter will be thrilled that the whole family will be going out together.  This is something they mention often and something that will make all of our lives so sunny.

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2 responses to this post.

  1. Posted by crystal pennington on August 20, 2011 at 12:22 pm

    Erica, you may not consider yourself a strong person but you are! I admire your strength and thank God for you!

    Reply

  2. Posted by Julie Rohrer on August 30, 2011 at 3:22 am

    I love the Disney on Ice poster in the room. Fantastic idea!
    Keep posting incentives/goals….even the littlest things matter.

    Reply

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