Wednesday, September 21, 2011

Hug a little tighter and more often, say I love you's unceasingly....

The other day I got a CaringBridge notification for Christopher. A young man I had recently found through another NF moms post on Facebook. He was not doing well. I went to his page and read his story, journal updates, sent a card in answer to a request from his mom and posted comments. (maybe it is just me but I love and find comfort in comments people leave me)

Christopher was Cindy's only child and son. My heart clenched when I read that. Kyle also my only child and a son I felt an immediate connection with Cindy. Every time I got a notification over the last month I feared the worse for sweet Cindy and the rest of Christopher's family.

That final notice came a few days ago. Sunday the 18th, sweet Christopher passed away. His mother writes such lovely updates. You can read his story Christopher was diagnosed with a brain tumor due to a complication of NF about 3 1/2 years ago. And fought a courageous battle since.

As I read this Monday I cried, sobbed, tried not to think of all the what if's our own uncertain future brings. Monday I hugged Kyle and kissed him every moment I could all the while trying to hide the tears forming in my eyes. I caught myself fussing at Kyle Monday night and felt so guilty. Thinking Cindy would love one more chance to "fuss" at Christopher, to then immediately hold him tight.

This is the 3rd person in the 2 1/2 years since Kyle's diagnoses that I have "met" someone in the online NF community to pass from NF. They have ALL been to young! Ages ranging 14-23, to soon. I think, at least for me when I hear of someone in the NF community passing away my heart seizes up at the fear that grips me. And then I get fighting mad! ha ha I push forward, raising awareness, offering support where and when I can. And then I hold Kyle a little longer, a little tighter. Wishing with all my heart I could bottle up these moments so that I never forget. Wishing I could somehow hang on to the feeling of him in my arms, his little arms around my neck hugging me tight. Saying "Mom, you are my biggest friend".

I cant believe Kyle is already 4 1/2. Where has the time gone? As I tried to cuddle/rock him like I did when he was a baby I told him to stop growing up. He looked at me puzzled and asked why. I told him cause I missed my baby Kyle. He patted my shoulder and said its ok mom! Oh to have the quick reassurance that he has.

It has been said before, time is precious, or you don't know what you have until it is gone. That is so true and on one hand I hate that those of us in the NF community are reminded often that we cant take anything for granted. And on the other hand how great is it to be reminded so often that we hug our little ones so often and comfort others in need.

This week I have been pondering on this a lot. I can not change the future with fruitless worry. I can not control how long Kyle is here on this earth only God can. All I can do is treasure every moment like it is more precious than gold because it is, all I can do is fight the hardest I ever have for him, all I can do is love him, plan for a long and healthy life and take comfort in knowing he is mine fore eternity.

Kyle mom loves you more than you will ever know. I think I love you more than even I will ever know. Some days my heart is so full of love and pride (you know the good kind) that I feel it will burst. I am so happy and filled with joy it is dizzying and I have to catch my breath. You bring nothing but joy where ever you go, whatever you do and to whom ever you come in contact with. I cant imagine life without you and feel so blessed that I get to call you son.

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