Friday, March 28, 2014

My Email Inbox Can Suck It, In More Ways Than One

There in my email inbox along with 458 other messages which I need and want to respond to but never can find the time and you have NO IDEA how much this bothers me sits one unopened message which I have just received. I see the subject, assume it was sent to me by mistake, and I almost click delete with haste. Just as I'm about to make my inbox one message lighter, my eyes narrow, I lean in closer, click on the message, read it thoroughly this time & finally, it hits me. The words sting. My eyes well up with tears. Images, scenarios and little movies play out in my head of things I don't want to see... but yet I do... NO... I can't. It hurts too much. I want to go there -- just for a second -- but when I do, it takes everything in me to not double over into the fetal position and cry that ugly cry that ends with heaving and red, puffy eyes and a migraine and a shit ton of regret but in the end feels so. worth. it. because if I hold these emotions in for too long, I might just fucking explode.

The email message subject:  2014-15 7th Grade Orientation

My "subject":  

  • Sweet, tiny Claire
  • Age 12.5 years old
  • Developmental level according to asshole neurologists: Newborn
  • Zodiac Sign: Leo
  • 34" tall
  • 23.5 pounds 
  • Technically a 6th grader this year
  • Never attended school one single day in her life
  • "Homebound"
  • Founding member of WSD gang (AKA West Side Dwarves)
  • Resident badass

My girl could have started middle school next year. We could have picked out a backpack & got a locker caddy and mirror & that first day of school outfit & planned how we'd fix her hair & prepared for boyfriends & puberty & school dances & middle school drama & sports & pressures. We could have had just Lola at home during the days and let her be an "only child" for a time. We could have seen our daughter interacting with friends, teachers, & maybe coaches. We could have heard others talk about her personality, spunk, long, skinny legs & dimples. We could have seen if she was the typical middle child or a rebel like her mama. It is so hard for me to think of these things, yet I do. Not often, because that is not who Claire is. But I would be lying if I told you that I don't wonder about how she'd be...

When Claire was around 3-4 years old, I remember going to an art show in Arizona & watching hundreds of thousands of people walk past our booth over the course of three days. At one point, I remember asking Scott this very question: "What did you think Claire would be like before she was born -- before we knew she had special needs?" He said he had an idea in his mind, and I agreed that I did as well. At one point, later in the weekend, he yelled out to me, "Gwen, see that little girl over there? She is EXACTLY what I thought Claire would be like before I knew her..."  There stood this petite, blonde-haired girl who was smiling, sweet, & active. She was dressed so cute with her high ponytail, bouncing around, completely happy to be at the art show, finding joy in every little thing around her. I watched her interact with her family & it was obvious that everyone around her felt and fed off her energy. She was pretty & perfect. I remember wishing for a split second that I could experience what being her mother felt like. Shortly thereafter, I faked a bathroom break & lost it in a dirty Porta-Potty. I never told Scott. 

Fast forward to now & this email & these feelings & the "what ifs" & this MF PMS. Here I sit reliving those early feelings of sadness & the loss of the dream & seeing other kids Claire's age who would be her classmates if she were typical & how much fun I have talking to these girls & wondering what *MY DAUGHTER* might have been like had she not had special needs & WHY am I going there now? WHY can one simple email combined with hormones & probably the stars fucking aligning just right reduce me to tears so quickly? Why couldn't I just read it & click delete anyway, knowing it didn't apply to us?  I don't know. Maybe because it feels so BIG to me. Maybe because I see other 12 year olds & remember that even though it feels like I'm living in a time warp & Claire is still 5 and Lola's a newborn, that in essence, I am the mom of a 15, 12 & 7 year old. Maybe the fact that time IS passing scares me. Maybe aging and things changing is what I'm wrestling with. Maybe I feel we're testing fate. Or maybe I broke down because I've been trying to be strong for too long. 

Suffice it to say that after I had a good cry, I deleted that mofo. Then I swooped up my middle-schooler-to-be-who-will-never-attend-middle-high-or-any-other-fucking-school-for-that-matter and gave her a huge hug, a kiss, cried a little more, and I told her that she was, without question, the best damn thing to ever happen to me.

Because she SO IS.



Anonymous said...

You are amazing.... thank you.

Unknown said...

Claire's purpose in life is much bigger than that. She has touched thousands of lives and souls and brought true joy, compassion, kindness and understanding from complete strangers. YOU have done that for her, and for us. I ache for you, and I am also so grateful to you for sharing Claire and Lola with the rest of us. They bring us joy.

Heather R. said...

Incredible. Gwen, you write so well. Thank you for sharing.

Anonymous said...

Thank you! For loving your family, for being so strong, for sharing your story with us and for letting yorself take a break and be "weak" sometimes. Everyone reaches a breaking point every now and then and that is ok. Xoxo

Anonymous said...

Thank you! For loving your family, for being so strong, for sharing your story with us and for letting yorself take a break and be "weak" sometimes. Everyone reaches a breaking point every now and then and that us ok. Xoxo

Anonymous said...

I guess you could think about what Claire would be like if she didn't have special needs, but I have a better way of thinking about it.

There is no such thing as a "normal" Claire. She already is normal, because she is only Claire that will ever be. Claire is already the way she is meant to be, just as you are. Lola, Cal, Scott, they are all one-of-a-kind human beings who are perfect the way they are. There is no need to think of what Lola and Claire would be like without special needs, because they are perfect as they are.

Sure, they may never go to a traditional school or play sports or all that good stuff, but what about the hundreds of other things they can do? Take them to parks, see whats kinds of music they like and play it, play games, relax in the hot tub, watch TV together, do anything that makes them smile. The list could go on and on. Focus on the things they CAN do, instead of the things they can't do. Make them smile as much as you can. Help them be the best they can be. Overall, just make them happy :)

Gwen said...

@Anonymous - Yep! Agree completely & that is what we do 99.5% of the time. It is just those 0.5% of times that derail me as this email did. Not sure if you are the parent of a child with special needs or not - let alone 2 - but these days, these moments are bound to occur. Tough to cope, as they come out of the blue when you least expect it. And these feelings don't last for long, but I think I need to listen to then and learn from them & that is why I posted this blog. I cannot be the only one who feels this way. Anyway - know that we live a very happy life here, rarely wondering "what if" buti think it is normal and only human to wonder what they would have been like without special needs. Know we aren't lingering there... Feeling sad... But trying to honor and love all the feelings that come our way. Hugs!

momsmom said...

Gwen, you are such a sweet, sweet mother. I think every parent wants their kid to fit in with all the other kids. We all want to go through the routine occasions just like you said. But, Claire and Lola fit in. Right where they are supposed to be. For whatever reason, you were chosen to be their mom. Thank God! I don't even know you personally, but can't imagine them being anyone else's girls. I can't even imagine where else they would belong more! Your thoughts and feelings make perfect sense.

Anonymous said...

Hi Gwen! I just found your blog because I have a niece who was recently born with Microcephaly. I hope it's alright if I ask you a few questions, to hopefully get some insight into her condition.

1. What is it like for them to have CVI? In your pictures it seems like sometimes they only see out of one eye, and sometimes both which I thought was interesting

2. How would I be able to tell if my niece has cerebral palsy? Would it be diagnosed already?

3. I heard something about different types of MSG, I was told my niece has the least severe type. What does this mean, and what type do your daughters have?

4. ( little question to lighten the mood ) What are their favourite things to do?

Sorry for asking sooo many questions, but I would really like to know as much about this as possible and you seem to be the expert! Thank you for listening =)

Janene said...

Love your heart. Brutal honesty. And fierce love for your littles!!!

Gwen said...

Hey there! Too much to respond to here - can you email me at and I will respond via email instead? Thanks!!!! :) Gwen

Unknown said...


Anonymous said...

Somehow I stumbled upon this blog and can't stop reading. Now I'm a few pages deep and I feel like I'm falling in love with this kid. Looking at those cute features it's easy to imagine her cheerleading, dancing ballet, even modeling. I mean, I wish I had lips like that. Furthermore, I wish I would have had a mom like you when I was still young. Bless you.

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