FridaysWithLorelei: Where Has The Time Gone?

#FridaysWithLorelei: Who is this little girl?! And where has the time gone?!

I haven’t done a heavy, heartfelt Friday post lately. Partially because I have gotten some push back and comments from folks recently, saying things about my “depressing posts” or making judgements on my choices (like finally feeling like I can/should go out of town for a break – even though I will cry the entire way there).

So while I pondered exactly how these people have made me feel, I have tried to only share the light moments.  Or not say much.  Because really, social media sucks anyway.  A fun picture, with a smiling child.  A child who “looks so normal” as many have told me.  That’s what people really want to see. What they don’t realize is that so many of the light, fun and adorable pictures are misleading glimpses into our day.  Simply one tiny snap shot into our lives.  (I try to tell myself that when I look at posts by friends with “typical” kids too.)

Just one tiny snapshot.  A sliver of moment in the midst of a strict schedule of meds, the management and coordination of 4+ appointments and a nursing schedule each week, the multiple treatments, the PT/OT/ST/Feeding sessions, the fears, the worries, the mom guilt, the “faking it till making it” hours and the “just keep going” minutes.  On top of life, work, marriage, wine and all the shows lurking on my DVR.

Some days/weeks/months are easier than others. June was good.  There were no scary setbacks.  There was a lot of joy.  We had a very low key fundraiser and “Floated for a Mito Cure” on my birthday and raised over $1000 for mitochondrial disease research.  That being said, the bumps, uncertainties, and atypical developments don’t get any easier, they just become our normal.

Float for a mito cure raft

Last year, there was a day when I walked into the NICU and had this ah-ha moment.  For the first time in months, it hit me that it wasn’t weird to ask permission to see baby.  It simply was what it was.  A similar moment hit me last week when I was arguing with a doctor’s office while simultaneously receiving a text alert that I didn’t pick up prescriptions quick enough and they would be re-shelfing for a fee.  This phase isn’t any easier.  It just is what it is.  This is how our family works now.  And gasp, if we have another child (with or without) special needs, what then?

Throughout this journey you start crossing out your visions and expectations of parenthood and replacing them with “the next best things.”  Sure, we still hope and dream for the typical norm, like walking, but at some point, you take that off the table and think “maybe one day she will be able to get around by crawling or scooting.  That would be excellent.”  Which more recently turned into: “If only my kid could sit up, I would be over the moon with excitement, as it would open up a whole new world to her.”  Seriously, I pray daily that Lorelei will be able to sit up.  Something that I have always taken for granted.  A skill and strength of my own that never crossed my mind as something to be thankful for.

You readjust and you reorganize.  You give up on the dream of being a Girl Scout leader for your daughter’s troop and replace it with a camp night in the backyard for your motley team of newly acquired special needs mom friends.  You begin to realize your child will never have the same childhood you had.  You make a bucket list of things she needs to do.  You modify.  You readjust.  You get creative.

Lorelei on float june 2017

You realize that the family you always expected to have (white picket fence, 2.5 kids, non-crazy border collies with beautiful coats) is totally different.  We play by different rules.  Hell with the rules, we are playing a completely different game than the rest of the world.  And I’m realizing that that’s okay.  Our team looks different because we are different.

As for me, I am beginning to do better coping, processing, grieving and finding joy in the way the cards fell.   Telling myself that Lorelei doesn’t know anything else and for those moment, she doesn’t feel sadness when she sees kids her age walking and sitting up without their moms propping them for support.  I’m encouraging myself by knowing that it’s all working out the way God intended.  Reminding myself that postpartum depression, NICU post traumatic stress, and grieving for the life I expected is real, ugly and manageable.  But that doesn’t mean I don’t have bad days.  Because I do.  Often.  There are days when I phone-in life.  And during those times, I am thankful for the friends, family and strangers who have supported me.

So let’s go full circle with this post.  Back to that first paragraph.  Taylor Swift said it best… Haters gonna hate (hate, hate, hate, hate…).  So for those of you who feel like it’s okay to judge my situation, to say that it’s interesting that I can go to Key West, to say that I should have my shit together more than I do, to say “you’re still working?!”… I encourage you to try seeing things from outside of your protected, pinterest-perfect bubble.  Before 2016, I knew the world of special needs parenting existed… but I didn’t know what those parents went through on the daily.  I didn’t know the emotional toll that life took on those parents.  I didn’t realize that those moms are absolute badass ninja moms who never receive the recognition they deserve, who never stop advocating for their child, who ugly cry in the shower and then they shake it off.  (Shake it off.)

That’s enough for today.  I hear L upstairs kicking her feet and blowing bubbles in her bed.  Time to get this day started…


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