What’s in a word?

What’s in a word?  To me, it’s everything.  What’s in silence?  It’s heartbreak.
Having a daughter with special needs puts us in the world of special needs.  Online groups, acquaintances with children of the same diagnosis, etc.  So, through these groups and friends re-posting different articles, I read a lot of them.  I thought about posting some of the articles, but chose not to.  If you Google, “what not to say to a parent of a special needs child,” you will see a big selection of these articles.  A lot of these get posted, and re posted.  I even saw an article titled “What not to say to a parent that has lost a child.”  I find myself reading these articles, agreeing with some of the points, but mostly reading them with a pit in my stomach.  I feel that these articles are the yellow caution tape around an already isolated situation.
I’ve not had a lot of experience with people saying rude things to me.  I’ve never had someone say something completely inappropriate that I needed to put a defense up.  I’ve had things said to me that in that very instant a wave of nausea comes over me and I think; “REALLY?”  However, those statements that sit a little uneasy with me, I’ve realized, are meant with good intentions.  It’s taken me awhile to realize this, and I’ve had to swallow a little pride, but at least they are saying something.  These lists that I mentioned previously give the people reading them another reason to look away, or tread even more cautiously around me and my family.  I don’t want that.  I don’t want people to feel like talking to me or about special needs has to be so careful as to what to say.  I feel like people already don’t know what to say to me, so they better say nothing.  That’s even worse!
I have such a love hate relationship with Facebook.  I love how easily it is to catch up with someone.  I like that I can see pictures of my nieces and nephews that I don’t see as often as I like.  I like the resource of meeting others and having the accessibility of asking another MPS parent a question.  What I hate about “the book” is how easily my feelings get hurt from the non response of people who I thought would be there for support.  It’s petty and Jr. High-ish, but it’s true.  When I can see what other people are posting and liking about other things, and I never get a “hey,” “hi,” “how is Livia?”  It hurts my feelings.  It’s not just FB, it’s life.  Once again, it’s taken time and tears, but I’ve learned that putting my expectations on other’s only leads to heart ache and loneliness.  What I want more than anything, is for people to know that we are approachable.  We are still the same people we were before our daughter received her diagnosis.  If anything, we are better more loving people.  You don’t know what to say to me?  That’s ok.  Sometimes I don’t know what to say to other’s going through the exact same thing we are.  But, say something.  Silence, even if not intentional, feels insensitive.  In this day of social media, texting, emailing, easiness……let someone know you care.  I’m guilty too.  But, because I’ve been on the receiving end of silence, and know how it feels,  I’ve been more intentional with others.  Even when I can’t find the words, I find “xoxoxoxo.”  Or, “I’m praying for you.”  Or “Hi….I miss you.” 
The purpose of this post is to not make anyone feel bad.  It’s to let people know that you can talk to me, ask me questions, but mostly I want you in our life.  One day, Livia won’t be here.  One day, memories will be all we have.  I want that time to be filled with stories and love.  I don’t want it to be regret of not getting to know her, or feeling sorry for not reaching out to us.  I don’t want things.  I want relationship.  More than ever, I know how important this is.  So here’s a challenge.  Instead of checking your FB feed, twitter account, or take a scroll through Instagram; send someone you’ve been meaning to talk to or check in on a quick “xoxo” or “I miss you.”  See what kind of door open’s, and I pray it’s a relationship bonding/mending door!    

To those of you that are constantly loving and encouraging my family…..thank you!  To the texts, cards, emails, FB chats that I get daily from the people that just check in……thank you!  We could NOT get through this journey with Livia without you.  XOXOXOXOXO