It's been 4 and a half months since I've last written a blog post. Ohh my poor and neglected blog. I have to tell the truth (don't I always). I was so honest on my last blog post entitled Hope. Bare bones honest. I dug deep into a part of me that was dark and hurt. The response I got from friends, family and strangers was over whelming. Yet as much as I tried to appreciate all the kind words, phone calls and e-mails I couldn't help but want to scream at the top of my lungs 'I'm OK'.
This blog is therapeutic for me. It's a chance for me to share the good, bad and ugly that comes along with having a child with ARPKD. I get to share my love of cooking and all the daily little things that weave themselves in and out of this disease. I promise I am a happy person. I cherish every moment I have with my son and regardless of my doubts am committed to having a positive outlook for my sons life. With that being said any person who has a child with a terminal disease understands those moments where you feel as if the walls are closing in on you. Where your mind goes towards that darkness and for that moment you fall apart.
I take those moments and I share them. I blog whats on my mind and I feel better. I haven't blogged whats on my mind in a long time and boy have I had a million moments and things I've wanted to share. Yet I've been afraid. Afraid of putting everything out into the online world and having people judge me. It's scary being so honest but I truly believe that by sharing my life, my joys and my heartaches I am giving some mom, somewhere the comfort of knowing they're not in this alone.
So if you've just stumbled upon this blog for the first time, have known me my whole life or are somewhere across the world just looking for answers I thank you. I thank you for reading my blog, for keeping an open mind and for understanding. This disease isn't easy, it isn't fair and it doesn't make sense but I'm going to keep blogging regardless of how scary it may be.
I can not imagine its easy being the mom of a precious child stricken with ARPKD. I remember often the only words I could get out was "it sucks", while it does not sound like a mature comments. It's the best way to describe it. I recently blogged about a mom... same situation. As time goes on you would think you become numb to the loss of others. In some respects you do, but that numbness turns to anger and sadness for those families. Peace be with you, I continue to read... Keep blogging my friend, you have a voice... It matters, your post HOPE proves that you can make a difference even just for a fleeting moment... And more important the pictures of your son are enough to see that HOPE does exist for those families met with the diagnosis of ARPKD.
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