I listened as a friend told me about how much he was enjoying the
football season and his son playing. He shared with me the joy he felt
watching his son play quarterback. Giving me highlights of the most
recent football game, proudly he spoke of how well his son played his
position. The force, skill and strength his son was developing left
him with immense joy. I listened happy for him, as he talked to me
about fitting the boys in their equipment and the excitement all the
boys had as they practiced for their games.

Hours later driving home I could not help but think about my friend
suiting his son up for football. I could not help but think about the
differences in our lives. While he watched his son run, I pushed both
my sons in wheel chairs. While he helped choose the right size
equipment his son would need for this season, I refitted my sons in
AFOs and had their wheelchairs resized. While he tossed a football
back and forth to his strong son, I picked up legos off the floor that
slipped from my sons weakening grasp. As parents I was feeling we had
so little in common in the care of our children. I listened to him
beaming about how strong and fast his son was for his size, wanting to
feel joy for him. However, inside I was hiding my fear that my sons
were beginning to become to hard for me to lift and carry. While he
went to practice with his son, I took turns strapping my sons to a
machine that would help them stand. He watched from the side lines
with immense joy that his son was developing muscles. I watched in
horror daily as my sons showed signs of more weakened muscles.

As parents we shared the same kind of love and admiration for our
sons. Yet, in reality our parenting was so unalike. While he helped
plan strategy with his son for a game, I would be encouraging mine to
try to use their almost useless limbs just to feed themselves. while
he helped to condition his son for another season of playing ball, I
would work hard stretching the limbs of my Josiah and Cody, in hope to
preserve strength. I cried alone in my thoughts driving home that
evening. I had sometime ago accepted all the challenges that lay ahead
for my sons. But this pain was new to me. The feelings that were
bursting from me now were different. I was happy for my friend and his
son for what they shared. Yet inside, I was being reminded of the
pain and loss my sons and I faced each day. I was happy my friend
wanted to share with me how proud he was. I fought to control the
tears that fell freely down my cheeks. Wishing I was able to find a
comfortable way to happily share the fact that my Josiah took five
steps today while in the support of my arms. Find words to describe
the magnitude of strength I felt managing to assist Cody in the
bathroom by myself. Annoyed at myself that I was once again letting
this devastating disease hold me captive to my unrelenting fear I
pulled my car over and sat silently. I wanted to see my sons have
their moment of triumph at the level my friends son had.

After sitting for sometime alone with my thoughts, slowly I started my
car again. I knew I could and would learn to accept this too. In time
I knew this reality of loss would lessen. I would find courage to
share in the joy that my friends shared with me about their own
children. I would somehow find away to overcome the constant reminders
of the challenges we face daily. But for now, I would allow myself the
need to be comforted from the grief that had attached to me. Tomorrow
I would continue to sing praise for each attempt my beautiful sons
made at using their weakened muscles. I would embrace the fact that I
did not have a section sit with other parents and cheer on my sons,
because I stood along side of them.

Soon the season will change again, a new sport will start for many.
For us the same game will continue. The strategy unchanged because we
have just one goal, to have another day together filled with hope.

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Comment by Donna on January 19, 2011 at 12:48pm

Hi Rita (et al),  hhm, I read this post early this morning and thought, I know my husband feels the same way you do - that we all have - at some point during this mess.  I don't want to say that you are wrong in your feelings, because you're not, but perhaps you happened to come across an individual that quite frankly isn't "friend" material to begin with.  Being in an avid sports family, I can surely tell you there are plenty of parents out there that relive their younger years through the lives of their children and unfortunately many times its in the area of sports and unfortunately at times the spout doesn't know when to shut up.  Don't get me wrong, there are plenty of mornings that on my quick 5 - 7 minute drive to work I take the time to live in my pity party and that life just really sucks and at times have that slap upside the head of "is this really happening"?!?!?! Having true friends in your life means being able to be happy for them and their children's accomplishments whether that is sports, academics, theatre, or whatever.  It is EXTREMELY hard to be happy for them, but as I try to tell my 14 year old daughter, who is "really" just starting to understand what is all going to happen to Kyle - only you can choose to be happy.  It's alot easier to be happy but it takes a heck of alot more energy to be angry.  My biggest fear with being in the "anger stage", which I think is perhaps where we all fall back in to at times, is that we will miss out on so much becuase I think we all know, each moment is precious and it is for that reason, if I go there, it is not for very long.  As terribly, terribly difficult as it is, I would seriously recommend to take some time for yourself and try to reconnect with your friends - they are out there, I know they are.  You are not alone in this journey,  you have all of us - may not be the "group" of friends you had on your master plan, but we are all here.   Take care (& by the way, you are a great writer!!!)

Comment by Rita Felling on January 19, 2011 at 10:10am
Katherine that feeling of  being alone in this journey is so very difficult in itself. I am touched you  felt connected to how I feel.  I seem to struggle very often with that myself.  Being strong does not take a away the fear or the isolation our emotions make us feel.  It is a very nice feeling for me when I can share in my passion, I to do not feel so alone then.  Thanks for taking the time to post a comment.
Comment by Katherine Blake on January 19, 2011 at 5:48am

Rita - this is...profound.  There are times when we ARE happy for the successes of others, and we need to be because we want others to be proud of our childrens' success.  But, sometimes I don't want to be around another child's success because my child will never reach that - I admit that there are times when I am green with jealousy and envy.  It hurts, too much.  Those moments alone with my grief and angry and envy and sadness are tough.  You are very right though, we will eventurally get through because we need to for our children. 

Thank you for sharing this - for putting into words what I feel.  I could do without the tears it brought (chuckle), but today, right now, at this moment - I don't feel so alone on this journey. 


Comment by jenn on October 14, 2010 at 6:11pm
i think that this is exactly why i have so few friends. i couldnt stand watching and listening as other peoples' boys' grew, and learned to ride bikes, played t-ball, and went skiing. i am proud of my boys, just as you said, but it is still painfull to watch these families live such lives that i can only dream of.

does this friend know your sons? i cant help but wonder what he was thinking in going into such detail knowing your struggles. some people just dont understand. a mom i went on a field trip with today spent an entire ride telling me how unfair her daughters school is, as she is so gifted, and not offered a gifted curriculum. meanwhile , my son struggles to be allowed access to school, because he is in a wheelchair and has learning disabilities. it just shows, people are blind to the struggles of others

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