Thursday, February 16, 2012

Labels

Jack has been given many labels in his short, almost 3 year old life.

-Not Viable
-23 Weeker
-Micro Preemie
-One Pounder
-Hydrocephalic
-Failure to Thrive
-Global Developmental Delay
-Cerebral Palsy
-Non-Verbal

... you get the picture.

Sometimes the weight of those words is almost too much to bare. I've been thinking so much about labels this week. From other preemie parents hearing of a diagnosis to my own pondering about what life will be like for Jack.

I was truly amazed at the thoughtful comments and messages I received from many of you after yesterday's post. I wanted to give you all a little encouragement back, because you can't imagine how much you all mean to me. I really cherish this community we have.

And honestly, this is some encouragement for me, too. A friend sent me a link last week to the most wonderful letter and I wanted to share it with you:

To Parents of Kids with Labels

Dear Parent Hero,

I know your path is challenging, extraordinary, scary and surprising. I know because I walk that path with you. Parenting is such a crazy road up a steep learning curve but add in a label, a diagnosis, and suddenly highs are higher, lows lower; plummeting drops unfenced and level ground infrequent. 

Your heroism is often invisible to a world quick to stare at the disabled, to run from the sick and to misjudge the challenged. So today, to the inspirational people on this journey with me, I say...

For every hour spent in waiting rooms with high hopes set to be dashed by the professional who didn't care... know you are your child's expert

For every wall you have knocked down as you stood firmly on the solid ground of your instinct... know you are your child's protector

For every time you have whispered love regardless of trashed rooms or bite marks, wiping away their tears whilst trying to understand the unfathomable and pre-empt the unforeseeable... know you are your child's comforter

For every time you have screamed at cruelty, highlighted injustice, and demanded inclusion... know you are your child's light of hope, shining into ignorance's darkness

For every time a sleepless night has whispered 'I can't do this' into your exhausted mind... know that you are your child's safe place and the arms that chase away their darkness

For every time your child's smile has soothed your soul and calmed your fears... know that they are the most amazing love-affair you will ever have

For every time your child grabbed life, tore up their label and forced others to see "them"... know that they will allow you to hear the true voice of freedom

For every time your child reached a milestone with tiny steps, whilst others were leaping... know that they are your magic in a world that takes too much for granted

For every time your child has pushed you to look beyond yourself, made you love unselfishly, unconditionally and with no end... know that they are your blessing and your path to heaven on earth

Fellow travelers on this path less normal, I send you love today. I will savour with you the wide horizons, sweeping vistas and hard-earned views from the top! Let us delight in this walk together for our joy holds the key to unlocking the world from the stronghold of 'normal' that leaves it blinkered. Be blessed!

Love, 
Jane

Pretty amazing, right? If you want to read more, this was taken from the totally awesome Letters to the Underloved.

To end, I have to tell you I was a little surprised yesterday to be looking down my subscribed blogs list, to see a post titled "Dear Jessi". I thought "Is that for me?"... Turns out, it was. Read it! It's from a mom that has totally more experience than I and who has such a way of putting it all into perspective

... a two year old, is a two year old, labels or not.








P.S. Did you think I would leave you hanging on Thankful Third Thursday?

The rules: On the third Thursday of every month, I will write about 10 things I am thankful for

1. perspective
2. yummy Potato Leek Pizza 
3. that my mom is on her way to visit for the weekend
4. which means, Jon and I get to go on a few dates (I can't really describe how thankful this makes me!)
5. kisses from Jack
6. Downton Abbey
7. office re-model (or maybe I should call it re-decorating)
8. real deal photography jobs
9. this blessed quiet while Jack peacefully naps (happening less and less these days)
10. play group this morning where Jack had a good time and ventured out a bit from mama


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7 comments:

amy said...

:+)

Shannon said...

Jessi - Thank you for this. Today was one of our "bad days" and I soooo needed this today. :)

Mummypinkwellies said...

:))) x

Fab post and thanks for picking up TTT again :) xxx

Julie said...

Loved the Dear Jessi. :) She's absolutely right...all labels aside, Jack is TWO. A friend of mine (the one Jack has such a huge crush on) once told me, "Babies are a mystery." It has carried me through so many of those moments of complete consternation, frustration, embarrassment and worry. And yeah, pretty sure he's not the only one screaming at playdate. We need a mute button so we mamas can actually talk.

Jacksonsmommy said...

Wow, that's what I needed after the weeks of ups and downs. Thanks!

Jen said...

I just found your blog, and your story with Jack is so similar to our story with our daughter Lia. She was born on 5/7/09 at 27 wks at 2 lb even, but because of the raging amniotic fluid/placental infection I had she had stopped growing and was more like a 25/26 wker. She suffered from grade III and IV brain bleeds, had feeding issues lasting until she was 1 1/2 that resolved right when they were talking of placing a feeding tube, and has CP effecting her left side. They have been suggesting constraint therapy to us since Lia was 4 mths old. We are looking into it more seriously now, as Lia has lost range of motion and her muscles in her arm seem to be tightening more. I read your NICU story and cried as it hit so close to home for me. Every NICU journey is unique, and as a mom who has had 4 preemies in the NICU, from 35 weeks to Lia, the journey of a micro preemie is SO different you can't even compare it to a late term preemie feeder grower! Your Jack seems like such a little fighter, and is such a handsome little guy! He's come so far since his super tiny beginnings, a little miracle for sure!

Jessi said...

Hey Jen! Thanks so much for leaving a comment and sharing your story! I always love to hear from people who happen to stumble across our blog somehow. It's good to know we are not alone in this!