P. Sunshine

P. Sunshine
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Friday, March 11, 2011

Inspiration...move me brightly

Inspiration can hit us at the most odd times. For me it would be 2AM last night. I stayed up all night reading Sarah Jones' blog . I read it from the beginning and ended up crying harder and deeper than I ever remember doing in my life. The emotional outpouring was triggered by sadness for Sarah and her family, but then turned into feelings of guilt, despair, anger, and regret. Sarah's openhearted writing not only made me realize what her family has been through, but forced me to finally stop denying that the disease which my son has could ultimately end his life in the same way.

I feel so guilty that I have taken for granted that Hayden is "doing well" now and that I have not taken advantage of every moment we have together. As a fulltime-work-away-from-home mom and now with Hayden in Kindergarten most days, my time with him is limited. So why, why do I go home and let exhaustion from MY day get in the way of playing with my son? I do not know how much longer he has on Earth. And the fact of the matter is he is not doing great. Cystic Fibrosis is a Progressive disease. It gets progressively WORSE. I have been in denial of Hayden's progression just because he hasn't had frequent hospital visits. This does not mean that he hasn't progressed. He has tested positive for Psuedomonas at every clinc (except the last one) for over a year now. That is worse. He has a G-Tube now. That is worse. He has a daily cough. That is worse. He tires easily during physical activities, even just walking. That is worse. It's so easy to make excuses and be in denial. My eyes have finally been opened.

Today I made a promise to myself and my sons (my other son, Riley has ADHD) that I will not let my tiredness at the end of the day or on the weekends get in the way of spending time enjoying my sons' lives and giving them the best life possible. If I have to, I will buy a coffee maker (since I gave up Diet Coke) I will get up in the morning and do jumping jacks. I will do whatever it takes to be there and be active in their lives. Simply telling my sons that I love them is showing them words. I need to act, so they can FEEL how much I love them. Yes, they fight and they use potty talk and they drive me nuts, but my life is so much better because they are in it. Perhaps if I engage them in more play, they will fight less and use more approproate language, maybe not. I am lucky that they are still here, and I need to take advantage of that.

So my friends, I love you all like you are family of course, but if I turn down invitations, please don't take it personally. My main priority needs to be my main family. I have been so selfish and I am so angry with myself and so filled with regret that I have already wasted some good years worrying about when my free time would come. I can have that later. For now I need to bury myself in love-as much as I can for as long as I can.

1 comment:

Alaine said...

Oh Patti - I went and read some of Sarah's blog - I was instantly and constantly in tears. I honestly cannot fathom what it's like to have a child with an incurable disease that most likely would shorten their life. I don't know nearly enough about CF to know how it affects Hayden and your family. Just know that I am praying for him, your family and everyone else affected. And I KNOW you're an awesome mom, but any of us could do better, right?