Meltdowns, Pep talks, and Picking up the Pieces

courtesy of Pinterest

courtesy of Pinterest

A part of the grieving process of a Lissencephaly diagnosis is mourning the loss of the child we thought we had and learning to appreciate the child that we do have.  I’ve written about this in previous posts and I feel like this will be a life-long process. With every stage of her life there will be constant reminders of what she won’t be able to do.  Right now, Paige is 8.5 months old.  She should be sitting up, maybe crawling, definitely exploring and playing.

But she’s not.  And according to Wikipedia, she may never do any of those things.  (Just a few reasons why I don’t search anymore…)

Instead, I remind myself what she can do.  With help, she can explore with her mouth.  She’s getting stronger during tummy time.  She’s starting to bear weight on her legs.  She’s smiling, laughing, tracking, and alert.  She’s thriving.  She’s here.

In the upcoming months and years there will be more age-related milestones that will inevitably make me sad.  When my friends will be taking their daughters to dance class I’ll be taking mine to a specialist.  When they take theirs prom dress shopping I might be taking mine for a wheelchair fitting.  When other’s kids are looking forward to school, sports, and activities, I’ll be wondering when Paige will have a seizure and if I’ll be able to lift her.  Or worse yet, if I’ll even get to have that time with her at all.

I know all of this might seem far-fetched, and once again, it’s absolutely not at all productive, but these things do creep in my mind and I hate it.  I hate that I even give the thoughts my time and energy.  I hate how I feel guilty when I do get this way.  I hate how I sometimes get jealous.  I hate that I probably am being selfish and feeling sorry for myself.

I’ve found that my worst thoughts come when I try to suppress them and be the “bigger person”.  I know these feelings aren’t particularly attractive characteristics so I compartmentalize my grief.  When I put these emotions away, I quickly find that my body and brain simply has a limit and that’s when a meltdown occurs.  Pretty recently, I decided to just let myself feel how I’m feeling when I feel it and then LET. IT. GO.  When I go about it this way, my feelings last a few moments and I can carry on.  When I keep all of them in and push them aside, they back up and it becomes an entire day of crying.  I simply can’t do that.

I give myself pep talks to keep going.  I remind myself that Paige is an absolute delight and she’s the most pleasant baby I’ve ever met!  I kiss her chubby cheeks and smell her sweet neck and love up on her constantly.  Actually, being with her keeps me calm.  SHE is doing wonderful and I am the one who is sometimes not.

In my previous post, I wrote about how Paige brings people together and is just a complete being of joy.  I still stand by that and will be proud of her no matter what she can or can not do in her life.  She amazes me every day and I am happy to have her a thousand times more than I am sad about her diagnosis.  And she will always be my best girl.

courtesy of Pinterest

courtesy of Pinterest

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2 comments

  1. I found this post extremely uplifting. My nephew has been diagnosed with Lissencephaly this past year (he is going to be 5 months old in a few days). I loved this post because I found myself relating to the thoughts that you’ve been having. Everyone says to look on the bright side of the disease and cherish every moment you have, but sometimes these dark thoughts can consume us. This was a post that I have needed to stumble upon. Thank you so much for writing this.

    1. Hello! Glad it helped you. I try to be really honest because it’s incredibly hard and I still struggle with bad days. We’ve only known for about 7 months but I have a feeling it will be a lifelong battle of the blues. BUT, we wouldn’t trade Paige for the world. Not even for a typically healthy child and we’re happy she’s here!

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