The Audacity to Share

Tuesday, October 22, 2013



We're all part of at least one. 

The Preemie Message boards.

You know the ones....

Facebook.  Yahoo. Inspire.  Babycenter.  Etc.....

Heck, I even started one on Facebook...although, I win the not so good admin of the year award for leaving my wingman.

We've all seen the posts that go something like....

My twenty five weeker was born weighing 850 grams and spent 117 days in the NICU.  She is celebrating her 2nd Birthday today!!! Despite her early birth, PDA ligation on day 3, bilateral grade II brain bleed, ROP that required laser surgery, NEC, coming home on oxygen until she was 7 months, she is now a happy and healthy 2 year old girl who has a slight speech delay, but has graduated from all other therapies and has finally caught up!  Whew!!!  We could not be more proud!  Life is good!

While these kids do exist, I've met them, seen them with my very own eyes....

It doesn't help those of us who are still buried in the trenches.

Afraid to share.

Desperately seeking others who do share.

Who do understand.

Who have been there and who are there.

That it's ok.

It's ok to mourn and moan...vent, complain and worry.

It's ok to not be ok today. 

It's ok because everyone is just ok. 

It's ok if she doesn't catch up by 2 (because newsflash.....she didn't...and those words need to go out the frickin door with growth retardation and incompetent cervix....can I get an Amen!!!??)

And heaven forbid I hear (from a preemie mom nonetheless)....

"God doesn't give you more than you can handle."

"Just be glad she's alive."

"It's a rollercoaster!"

"When is enough, enough?"

"You're being too negative"

"You really don't have to keep her on lockdown another RSV season, do you?"

And probably my favorite one, from again, a fellow micro-preemie mom...

"She'll catch up."

Mama's....please. 

Yesterday, I came across a blog post titled, One Day, I Will Have the Audacity to Share

I have to say, for a second it kind of wrecked me.  She gets it.

While we're a little further down this road than she is....we're now that needle in a haystack on the message boards, in the Facebook groups, etc. 

She gets it.

Someone out there, besides me, gets it! (insert Angels singing)

That's why I'm still sharing her. 

That's why I still gush over every.little.cotton.pickin.thing.she.does.

That's why, if at all possible, I steer clear of the message boards.

When I was on bed rest with Alli, I desperately sought posts, message boards, groups of others who had been there.  It's human instinct in this day and age to do so.  I didn't find many, but there were some that gave me hope, and others that scared the living be·je·sus out of me. 

As she's gotten older I've sought many of those same groups and added new ones.  I've had to delete some of those groups as well (Preemie Mama's, we can be vicious and it's always a contest....can I get another Amen!!??) 

I've found precious friends in those groups.  Who has real life friends nowadays anyways?  And for the most part, if I have a question or concern I text/call/message a particular Mama or two or three...one of the few Mama's the question of the moment would apply to....one of those few and trusted compadres. 

I keep a few of those groups up for just in case questions no one else can answer for me.....

But we all know what asking that question in those groups with 1,000 members will get you, now don't we? 

As time marches on, babies are catching up, they are getting healthy, they are enjoying typical life as a growing and thriving toddlers. 

On behalf of the Mom's with kiddos 2, 3, 4, 5+, who will never catch up or who are trying to catch up.....we couldn't be happier for you and yours, trust me. 

Sincerely happy.

But there are a few of us still left in the trenches.

Still battling out what prematurity left behind.

What prematurity stole from our kiddo.

And we need to hear....

Hi guys!  My name is Jackie and I'm the mother of 3 beautiful blonde bombshells (2 full term and 1 micro-preemie).  My twenty seven weeker, Alli Grace, was born weighing 420 grams (14.8 ounces) and spent her first 199 days in the NICU.  At 33 months she now has spastic diplegia cerebral palsy due to PVL. She is 100% gtube fed, severe oral aversion/facial defensiveness, and severe sensory issues. She doesn’t eat, walk, or talk and still requires oxygen at night and for naps due to several factors including; obstructive and central apnea, pulmonary hypertension, and chronic lung disease.  Throw in epilepsy for good measure (still trying to figure the extent of that one out and seeking a third opinion) and we've got ourselves a party.  She “tests” between 9-12 months in EVERYTHING, but loves laughing, swinging, being tickled, music, books, Mickey Mouse, Sofia the First, and playing with her two big sisters. We spend hours each day in therapy and when not in therapy we’re “still in therapy” if you follow me. :) Today, I made an appointment with the seating and wheelchair clinic (it still kicks me in the gut, but it's ok).  I know in the end it will be a great aide for her as she transitions to early childhood special education next year.  We are completely proud of her and in awe of where she is today!  Yes, we're more than thankful she's alive and as "Alli healthy" as she is today! 

Oh....

And we're all ok

Show me more of that Mama!  You are needed more than you realize. 

(The obligatory before and after photo)




Jackie
 

14 comments

  1. Replies
    1. Thank you for the charge to share!

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  2. Jackie, I came across your wonderful post and blog via a FB share from Jessi at Life with Jack. You get a loud Amen from here. My youngest, Boo, was born at 29 weeks. He got meningitis on day 3, had a bilateral grade 3 IVH and soon we discovered PVL. He is now 18 months actual age and has been diagnosed very recently with quadriplegic CP (although I have known as much since he came out of the NICU). He also has infantile spasms (a 'catastrophic' form of epilepsy currently completely controlled with meds). I started a blog, Premmeditations (http://www.premmeditations.com) 6 months ago when I felt that the premmie (I'm in the UK) boards didn't seem to have room for me any more.

    From a sister in the trenches, I salute you and your beautiful family!

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    1. Thank you for reading and sharing! Looking forward to reading up on you guys!

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  3. Well done. Just one problem... you forgot adorable. :)

    I have to avoid preemie message boards. My late-term dude isn't caught up yet, at five. I don't count because my son was born at 35 weeks even though he has severe and lasting delays. We've also experienced the "really not good" outcome of the NICU and lost a child we deeply love. (not ours.) Soooo.... yeah. I get this post.

    And thank you for always sharing your sweet, sweet girlies with the world. :)

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    1. Thank you for your sharing your son! Oh and you DO count! We all count!

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  4. Amen. Bless you. Thank you for this post.

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  5. Hi I'm Amy and I am mom to 3 crazy kids aged 8, 7 and 25 months. Our youngest was born at 26 weeks, 1lb 8oz and spent 115 days in the NICU and battled much of what every preemie does. He has struggled since coming home and has an extremely rare terminal recessive genetic disorder Fanconi Anemia, hydrocephalus, CP, Optic Nerve Hypoplaysia and FTT. He was 100% gtube dependent until recently when he went into Sick Kids and completed an inpatient intensive feeding therapy program and he is now 100% fed my mouth, it's a miracle. When he was admitted he was 13lbs at 23 months old and he is now 18.4 lbs at 25 months old. Developmentally and mentally he is at a 9month old level, he doesn't talk or walk, but he crawls like lightening and has started to cruise.

    He LOVES Star Trek, not even joking and no WE are not trekkies but apparently he is, and likes cars & balls. We couldn't be prouder of him and we ARE OK. :)

    He is the strongest little boy I know and I WILL tell EVERYONE I know and anyone about every little milestone he reaches because they are HUGE to us. He's changed our perspective on life and I wouldn't change him for a moment. I intend to live in the moment and be happy with exactly where he is, if he "catches up" some day then wonderful but I am NOT going to live with any sort of disappointment life is too short. Of course I will have down days and I will sometimes wish he didn't have to go through all of this and wonder what it would be like but I don't want to focus on that or let those days outnumber the GREAT ones. :)

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    1. Hi Aim Lou, Thanks so much for having the audacity to share! Your little man sounds like a true champion!

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  6. Love it and just shared on my www.facebook.com/itsapreemiething. ;) THANK YOU!!

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    1. Thank you, thank you, thank you! Love your things also...our favorite shirt we've ordered said, "I weighed 14 ounces....what's your excuse??" Kind of goes perfect with this post too! :) Hugs!

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  7. Replies
    1. Thanks so much! Glad it resonated with you!

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