Grieving and growing

This is so weird and hard and scary to say “out loud”, but I am still grieving the loss of the child we’ll never have.

Grief is such a unique beast.  Luckily, it’s not something I’ve encountered much of in my life, so to experience it in this form is strange.  And it makes me feel guilty.  But it’s very real, and it’s here, so I may as well accept it.

I think almost any special needs parent can relate to grieving the child who was imagined, who was expected.  Hell, I think a lot of normies can even relate.  Like any parent whose child has turned out so vastly different from the version of their beloved progeny they thought they’d get to mold.  “Ye of my loins, go forth and be great!  Do not embarrass me, and always remember…do not embarrass me!”

But I often think the special needs parent must feel the shock and pain of the unexpected more acutely.  After all, it’s almost universally accepted that kids will let you down, right?  I mean, don’t we all feel like enormous f*#king failures, despite being “normal”?? Think how our parents must feel!  Back me up here!

But I digress.

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I honestly don’t have a clue how other parents feel about how their children turn out, and I certainly don’t wish to compare my version of grief to anyone else’s.  We all only know our own experience, and this is mine. 

As I’ve said before, we had no reason to suspect Mira would be anything but “normal”. I’m “normal”.  And James is “normal”.  And literally every single person in our entire extended family is “normal”.  James and I are both musicians, we were involved in tons of things as young people, and we still have a ton of hobbies (mostly James. James has a ton of hobbies. I drink wine.).  We were both precocious children who excelled academically, had lots of (read: some) friends, and didn’t have any obstacles to achieving exactly what we wanted to achieve.  So it was only natural (I think?) to assume that our child would be just like us.  And when we found out she wouldn’t be, my stupid little ego-centric naive heart burst into a million pieces, which I’m still trying to pick up.

What’s super messed up is that I thought I was about as ready to have a child with a disability as almost anyone out there.  I worked with young adults with severe autism for four years as a para-educator and in-home aide, then became a case manager to adults with physical disabilities.  I had formed powerful bonds with these individuals, advocated for and with the special needs community for years, and even started a masters degree in special education.  I told myself long before I was pregnant that I would be one helluva badass mama to a child with a disability, should that be my path.  And I totally am!  I’m amazing!  I’ll say it!  You think I won’t say it?!  I’M AMAZING AT THIS!!!!!

But it was still such a freaking shock.   And it made me so sad.  And so scared.  And having those emotions, given my background, made me feel like absolute shit.  

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I’ve decided to stop feeling like shit, though, and just get past my guilt and hold it together for the angel pictured above.  Because I can’t imagine raising a child who had to witness her mother berate herself for her emotions, or for anything else for that matter.  As one of my favorite books that I read to Mira states, I need “to be brave and be bold so no shadows can stay.”

That’s easier said than done, though, and I need to confess something:

I am on medication to help me manage my emotions.  And I’m so freaking happy about it.  

Trying to power through my confusing mix of grief, guilt, fear, and self-doubt got me nowhere.  And for anyone in my position or a similar one, please know that you don’t have to keep shouldering the weight of your crazy hard life without some help.  I’m not saying to just jump on the meds train; I believe in exploring other, more holistic options before going this route.  That being said, none of the holistic approaches I tried were powerful enough to pull me out of the place I had gotten.

So I started taking medication.  And it didn’t just BOOM! cure me, but man oh man, it has helped so much.  I can react more rationally to bad news, hard situations, and my own negative emotions, which used to overwhelm me.  And now I can so much more easily focus on the blessings my life has afforded me, rather than get bogged down in the muck of how hard this all is.  The blessings now shine 110% brighter than they used to, and my oh my, there are so many of them shining on our family every day.  

So basically I’m blind now.

Is that offensive? ?  I honestly don’t even know what’s offensive anymore.  Sorry.  I love you.

Anyway.

I still get floored by my grief sometimes, and I am still scared about Mira’s future every second of every day.  But I am allowing myself to use tools to make this process easier for me, so it can be easier for her.  Because that’s the ultimate goal – making my daughter’s life as free from worry and obstacles as I possibly can.

Also, did you notice she looks like a superhero in that feature photo???  OMG I love her.

Love,

Nikki – mom to a supergirl

4 thoughts on “Grieving and growing”

  1. I LOVE how open and real this is. Every word is inspiring and full of hope. I suspect even when you share your frustrating moments, eventually hope will be restored. That speaks to the amazing woman and mother you are. I’m looking forward to many more!

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  2. I can imagine there is a moment of devastation when you got the diagnosis. And you are never wrong for feeling those emotions because ita bot entirely selfish to want a “normal” child, you want a life free of hardship for her too, I imagine. One day at a time ❤

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  3. Hi Nikki. I am reading your story now. I went to Australia with your sister in law, Jessie. Thank you for sharing your emotional journey. Have you read the story “Weleome to Holland”? Several of the parents of children with special needs that I have worked with have noted it’s meaning to them. Take care and I’ll pray for many blessings for you, James, & Mira.

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