The Club

Monday, September 17, 2012

It's certainly not a club I ever planned being a part of, but here I am.  And chances are, if you're reading this, you're right there with me.  Let me preface by saying, I have some pretty amazing friends, family, and church family both far and wide.  Our support system through the last two years has been incredible and has grown a gazillion times, yes, a gazillion.  I love them all, but at the end of the day, no one knows this journey like another member of the club. 

We're not all preemie mama's. In fact you could connect with someone who has a child who has battled a heart defect, cancer, spina bifida, down syndrome, what have you.  There is something about a parent who has been through the valley of the shadow of death with their child, for whatever reason, that allures a different connection. I had an "aha moment" on this very matter Saturday and it felt so good.
A few of us gathered at our favorite NICU on Saturday to celebrate NICU Nurse's Day.

Afterwards, we went for lunch and then took our heard of kiddos to the zoo.  Honestly, I cried on the way home.  The day was absolutely effortless.  There was so much peace in just being real with someone walking the same path.  I never had to hide my true feelings or emotions. I never had to fake a smile and say, "I know we're so blessed," or "I know it could be so much worse."  I could easily and freely say, "this sucks," or "I'm over it." 

And you know what else?  
I didn't feel the least bit judged for those feelings. 

You know why? 

Let me back up and say, I KNOW we are so blessed.  I KNOW had things not gone the way they did, we could still be mourning the death of our child.  I KNOW things could be SO much worse for Alli mentally, physically, and health related.  I KNOW all of these things. 

I also know many parents who have received quite a bit of criticism for this.  I know that parents of  preemies, medically fragile, and special needs kiddos are not ungrateful when they complain or are frustrated in the moment.  We're human.  We all have emotions and feelings.  It hurts my heart when I read a Mother's desperate comments for understanding on a blog or forum and she feels the need to apologize for those feelings.  Hurts my heart.   

Sister, no one here thinks you're not thankful for your child's life.  It's OK to complain about being in that NICU for the fourth month with no end in site.  It's OK to vent about feeding issues.  It's OK to wonder about the what-ifs and should have been's (just PLEASE only for a second...don't let it consume you).  It's OK. 

Just as someone says they "hate Monday's...."  I hate "sensory and feeding issues."  It doesn't make me ungrateful for today and this season.  It doesn't mean I'm throwing in the towel and giving up.  It just means that right now in this moment, I'm tired, I'm frustrated, and I want a second of the easy button. 

And you know what else??
If feels pretty darn good to have someone sit across from you nodding her head in agreement because she knows it sucks and just how hard the journey really is.  A member of the club.  

Do you know any??
If not, I urge you to find someone and communicate with them whether it be online or in person.  I promise you, it's food for the soul!  If you are on Facebook, I would love to have you join ours.  Just search for the Saving Grace Parent Connection.  My intent is to connect parents of NICU babies in a private setting where we feel safe to vent, share, discuss, and ask questions.  It would be my honor to walk this journey together with you!

Weekend Photo Dump

Special Needs Siblings ROCK!  These girls are simply amazing!  Ava, Skyler, Mya, and Anna Claire

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