Just for today

November 5, 2009 at 10:13 pm 1 comment

This amazing mom (whose blog I have linked to mine) has a poem on her blog from today. I am not sure if she wrote it but it is beautiful. It is about living in today and thinking about her baby that died. (Sigh….) I sometimes feel I complain too much here but often do feel sad about the boys.  But I do know that it is all relative and as my good friend says “everyone’s worst thing is their worst thing”. But reading that brings me back to reality. It does suck that my boys have ARPKD. It sucks more for them than for me. But it could have turned in a very different direction when Gabe was born. We feel we were lucky to not have had the ARPKD diagnosis prenatally. We were lucky we didn’t know Max had ARPKD until Gabe was born. We were lucky the doctors just wanted to focus on Gabe’s lungs and get him through those first 24 to 72 hours. We were lucky his lungs bounced back and he bounced back. We were lucky Max lived 7 whole years without any symptoms. We were lucky Gabe’s kidneys starting working at birth. We were lucky that only 2 of our 3 children have ARPKD and not the third one too! We are lucky on so many ARPKD fronts.

And in this woman’s post for today it says something to the extent of just for today she will not expect to get over her child’s death but instead learn to live with it one day at a time…. I will not expect to get over my children’s disease but try to live with it one day at a time…
And she said that just for today she will remember her child’s life and bask in those treasured moments they shared…I also will try to bask in all of my treasured moments with my boys…..
And she said just for today she will reach out and comfort a relative or a friend of hers who is hurting too… I will also try to reach out to comfort others
And she said just for today she will allow herself to be happy and enjoy herself … I too will try to allow myself to be happy
And an important thing she said is that she is the only one who can make her life worthwhile…and I need to realize that too!


Entry filed under: Uncategorized.

The “big” Game Poopy

1 Comment Add your own

  • 1. Julia  |  November 5, 2009 at 10:20 pm

    Yeah. The poem. Very emotional.

    Families who share their stories with me always have given me a different perspective. It does take time to adjust to being a mom of 2 kids that have a disease so don’t be too hard on yourself for finding your own way and time to deal with it all. Love you,


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