Sunday, February 27, 2011

What IT is like...

If only I had a dime for every time I heard, "I don't know how you do it", "I could never do it", or "how do you cope with it?", I would be less than a millionaire, but I'd darn sure be richer than I am now.

"It", of course, being the mom of a child with chronic, life-threatening illnesses.  It was something I never wanted or expected to be.  It is something I hate being labeled as and hate even more to define my spectacular son.  It is the hardest and most rewarding thing I've ever had to do in my entire life. 

I apologize if I haven't updated this blog very much in the last few weeks.  Sometimes it gets to me more than I wish it would, and in those times, it's hard to find my voice.  It's hard to put a rosy sheen on things all the time when you'd rather just run and hide.  Very often, I find it difficult to write the goings on of our lives in a way that others can understand and relate to and frankly, that doesn't sound whiny.  I lean on my faith as much as humanly possible.  My Savior and my family get me through each and every day.  In the last few weeks, getting by is just about all that I felt I was doing and unfortunately, not a very good job of even that.

Sadly, society easily makes me feel like "getting by" isn't enough sometimes, and I think many other moms of children with medical or special needs feel exactly the same way.  We are expected to push through and be grateful for every day with our children.  And we ARE...in fact, we are probably apt to be more aware of those every day moments with our little ones and truly find gratitude in the moments that are as "normal" as we get.  The days that we are completely overwhelmed, beyond isolated, and thoroughly want to give up (more than we'd like to admit), we are unfortunately burdened by the guilt of experiencing those very feelings.  That's not fair.  But neither is it. 

There was recently a post on Thrive, the blog published by Children's Hospital of Boston, by the mom of two very amazing children battling terrible medical conditions.  Shannon writes truthfully and from the heart, and reading it, I felt like she was speaking to no one else but me.  "For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation."  We try not to dwell on our reality, but ignoring it doesn't help us either.  (Of course, it didn't hurt that she talks about our beloved Dr. Kamin.  For the record, Keegan is just as fond of Dr. K.)

You can read Shannon's full article by clicking HERE.  I hope you do.  It might make you understand my life a bit more, and if you are in the same boat my family is, you just might need her words of wisdom today.

Once again, I apologize for my recent lack of updates.  Sometimes I just need to step away, and I hope you will grant me that every now and then.  I'm doing the best that I can, and my utmost priority is in caring for my children.  I might not do as good of a job as I wish I could, but I keep trying.  Because as Shannon wrote in her article, "life isn’t always fair, but it is worth fighting for."

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