Write Here and Now

I’ve finally committed to starting a blog mainly as an outlet for myself. Hopefully my kids will enjoy reading their story one day too!  I journaled a lot during high school, college and in my twenties. I wrote about all my dreams, boys, my weight, my self-loathing and typical female neurosis.  Then I met Dave and got everything I ever hoped and wished and dreamed for. A boyfriend who I adored and who adored me back!  Then a year later, a fiance’!  A beautiful house! The perfect wedding! A bun in the oven!  I no longer needed to write because life was pretty perfect

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Then Ben’s story began and life got real hard, real fast.  Fast forward through the coulda, shoulda, woulda’s and here we are now.  I have wanted to write all along, to heal, but never did anything much about it.  Glennon, the genius blogger from Momestery, explains writing and telling one’s story so well.  She does it all the time, but especailly here. Having someone hear your story is healing.  I guess that’s why I don’t keep my mouth shut when someone asks, “How are you (is he/is she) doing?”  I have to share.  I need for people to witness what we are going through.  By doing so, I’m able to cope.  To put one foot in front of the other and keep trying.

In addition to being a vice and therapy for myself, I hope that this blog will help someone else one day.  Someone who is struggling with the diagnosis of a child with an incurable disease (we’ve got two!), Menkes challenges, and therapy challenges.  Someone who is in the hospital with their not-yet-one year old daughter awaiting surgery for the fifth time.  Someone who doesn’t know how the heck they will get a six month old to wear glasses or a two year old to lay still while injecting them with copper histadine.  Someone who needs to order ankle/foot orthosis (AFOs) for their daughter and then find a shoe to actually fit on that brace.  I’ve got a lot of things figured out with these two blondies, but I’ve got a lot to learn as well.

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I hope readers will help me to cope on the hard days and will celebrate the milestones that pass most people by on time, as expected.  And if you can relate, please share!  Please comment and write.  I love social media for bringing people together.  For making me not feel alone in this big, scary world.  This is a big load to handle and if you’re carrying one, too, I’d love to hear.  And please ask questions.  Ask ANYTHING.  Anything about the kids or about me.  I tend to be an open book about our life.  Probably too open some times.  I can’t speak for all special needs parents, but I want you to ask why Ben’s speech is hard to understand.  I want you to ask why Kelsey has glasses or why she has a little bump on her head or scar on her tummy.  Talking about our differences makes me feel understood, and therefore more normal.

Thanks for reading.  You’re helping just by listening!

14 thoughts on “Write Here and Now

  1. Erin, I have been a friend of your mother’s since before you were born. We worked together many years ago and have kept in touch. I would love to read your blog to understand what Menkes is as I have never heard of it. I do know that you have two beautiful children and a lot of support so thank you for willing to blog about them and yourself.
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  2. How can I cry when I know the story so well?! But cry I did…for so, so many reasons. Happy, sad, frustrated, and hopeful reasons. May this be a great outlet and a place for you to know that you never, ever walk this road alone. Love you, dear.

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  3. Oh Kim-k- I am so glad you’ve started this blog- I know it takes great courage and vulnerability but both of those things will help so many others and probably yourself as well! I of course have tears streaming down my face. I think a lot of us probably try not to think about how hard this is for you. I’m sorry when I don’t dig further than the incredibly brave face you have on. I’m here any time you want to share anything. You and Dave are amazing people and you are now raising to pretty amazing people as well. Love you so much.

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