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    March 31

    CDH Awareness Day

     So, by special proclamation in Texas, today is CDH Awareness Day.  I'm not really sure what that means or what it is supposed to mean.  What I would like for it to mean is that when a pregnant mom is getting a sonogram she asks if she can see her baby's diaphragm and for the sono tech to know what he/she is looking for.  What I would like for it to mean is that when a CDH baby comes into this world, the doctors are prepared and the parents have heard of CDH.  But what I really want is for CDH to no longer exist and there would be no need for anyone to be aware of it.

    CDH stole my son away.  It ripped a hole in my heart that will never heal.  Having a child die from a birth defect that no one, not even some medical professionals, has heard of feels very lonely.  I feel separated from the rest of the world.  CDH? Oh, that must be rare because no knows about it.  In fact, it happens about as often as Cystic Fibrosis and everyone has heard of that. 

    I think we haven’t heard about because most of the babies die from it.  And because of moms like me.  I haven’t been getting the word out or to be honest, learning about CDH.  I don’t know all that much about it.  I know it took my son and I’ve just been trying to survive. 

    But because, we do have more babies surviving now perhaps more people will learn about CDH.  Just enough to ask about it.  Just enough to be aware.

    March 03

    Being in the Present

    So, I read somewhere that losing a child is losing your future and losing a parent is losing your past.  My father lost his battle to kidney cancer in June 2007.  I lost Connor in 2000.  I'm 37 years old and have lost my past and my future.  Which in a weird karma kinda way is a perfect life lesson for me.  I have always had trouble staying in the present.  I lament over the past and worry about the future.  Today sucks but tomorrow will be so much better.  I'll be a better mom, better wife, better friend, better dieter....but tomorrow always seems to end up pretty much like today. 
    Losing Connor was, of course, devastating.  I still wonder how can it hurt this much to lose someone I didn't really know. When we lost my dad, I thought okay, I've been down this grief road before I can do this.  It is horrible and awful but I can do it. 
    It's been 9 months and I still can't seem to make it fit.  It's like trying to put on a jacket that just doesn't feel quite right.  I think about my dad and still catch my breath.  How can he really be GONE?  How can he really not EXIST?  It's not right, I keep thinking I will wake up from this dream, it just a bad dream but I can't.  He was here and now he's gone.  And he was a really, really great person.  A great dad.  Not perfect but I do not know where I'd be or who I'd be if he hadn't been my dad. 
    You see, he wasn't really my dad.  He was my stepdad.  He came into our lives when I was 9.  I didn't accept him for a long, long time.  Like most kids, I wanted my parents back together.  I wanted my real dad to want me.   So many years I waited, I wasted for my "real" dad to be a part of my life.  And there was Ron, taking care of me, my family, providing for us, being a dad.  He was the kind of man that would do anything for anyone.  Really.  I know people say that about other people all of the time but he really was like that.  Do anything for anyone without hesitation.  He was kind to everyone....our waiter who was waiting tables for the first night.  He was in so much pain from chemo, etc but I always remember he took the time to tell him what a great job he was doing.  People would walk into to our house for a visit and ask him how he was doing...."Can't complain" was always his answer.  Can't complain??!!  The man was in so much pain I cannot even begin to imagine...he was DYING...but he didn't want to put anyone out, always wanted to make the other person feel at ease. 
    With Connor, missing him is like missing a dream, what could have been...a perfect little boy with brown hair and brown eyes.  But I don't really know him, my son.  Would he have been a good sleeper?  thumb sucker? good at sports? quiet or crazy?  What would it have been like to be a mom to a boy?
    But my father, I knew.  I can close my eyes and picture him, hear his laugh.  I hear his voice in my head all of the time.  I can almost see him standing in front of me, sitting in my car....like he did so many times.  But now he's gone and he will never laugh or sit in my car or hug me or my girls.  How do I get used to that?  How do I get used to hearing my girls miss their Pop?  How do I get used to him not being a part of their lives?  How do I get used to the fact they are getting cheated out of him loving them in a way only a grandpa can?  How do I live in the present when the present sucks? 
    Whew....what a nice little pity party I have thrown myself.  Now, my dad...he'd want me to pick myself up and move on.  He'd hate that his death would have been so hard....would have troubled us...the man didn't want to trouble anyone.  He'd want me to work hard and play hard and enjoy life, love my girls, spend time with my brothers, take care of my mom, appreciate my husband and keep my floors clean. 
    And Connor....well, it'd be just a guess but I'm pretty sure he'd want me to be happy...because we all know that when mama ain't happy, nobody's happy...