Thursday, February 9, 2017
It snowed last night which earned us a two hour delay. I was excited for the extra time with the twinadoes and even more please when our whole morning routine went smoothly. No tears, no arguments, we all walked out the door smiling.
We were about ten minutes early to school and waiting at the car rider door when things changed. Miss A jammed a 'ring' (in reality, it was the sight off of a pair of toy binoculars) on to her index finger and got it stuck.
I tried sanitizer. I tried lotion. Being in the car, my resources were limited. Between her dramatic screams I noticed her finger was swelling and she said it was really sore. So - with school still not open, we buckled back up and headed to the ER.
An hour from the actual time of the incident the ER docs (all two of them!) finally freed her. Her finger was still in tact, albeit a little read and sore but we survived.
I don't talk a whole lot the inner workings at home any more, but reality is - some days parenting is hard. Some days parenting Addison is really hard. She's a very unique individual. With a complex and sometimes confusing set of challenges.
When she struggles, I (we) struggle.
Kindergarten has been a huge challenge for her. She doesn't learn like her peers, but she works her but off and we've got an amazing team - doing absolutely EVERYTHING they can do for her to help her succeed. And she is succeeding, at her own pace. Doesn't mean she's not struggling.
She's misunderstood. People look at her and look at me and think I'm nuts when they hear about her challenges. These people don't see the fights in the morning over socks that feel funny. Pants that tickle. Tags that are attacking her back. And don't even get me started on need to brush her hair. Nearly every morning there are tears. I can't fix things and make them not bother her. (Lord have we tried.)
I've never met a child more resilient, brave and strong though - because no matter how uncomfortable she is, she pushes through.
Still there are things she does not understand. I cannot even imagine how in a split second she got this silly toy stuck to her finger, how she ever got it over her knuckle to begin with or how she didn't think, "This isn't going on, maybe I should not push it."
Pieces don't always connect for her. What seems logical to you, me, heck even Mr. B - they're not so logical to her.
One thing I've heard over and over this year, with school is that she doesn't fit any certain criteria. She may struggle with one thing, but do great with another part of the same things, like letters. Her teacher gave me this example, when identifing letters - Addi could id the letter 'v', later during a writing assignment - she asked how to spell 'cave' and the teacher prompted her 'c...a...v...e....", she wrote the letter 'v' without having it pointed out to her. It's hard even for them to find the pieces.
I don't know how to accurately explain today, because it wasn't just the toy stuck to her finger after that. It all went down hill. She's been extra emotional today. Into everything. As in, cannot be left alone for a split second without doing something she knows is off limits.
- Much like the night she emptied all the groceries from the fridge and laid them on the floor. Because 'you're not supposed to put the grocery bags in the fridge and I wanted to help.' Except she missed the part about putting all the stuff back in the fridge, sans bags.
- Or the times she sleep walks and tours the whole house. Thankfully, most of the time, if I don't hear her, Remi does and lets us know.
Most nights, Addi (and Blake) find their way into our bed. I sleep horribly but, I know they're safe. Addison is usually wrapped so tightly to me that I know when she moves. So yeah, it sucks sometimes, but I'm ok with it.
We're all learning and adapting.
Yes some of it is typical 5/6 year old behavior. And it's ok. It really is. But some days are really really hard.
Today was one of those days.
When you have a child with any kind of special needs, it's hard for other people to relate. Hard for them to understand. And sometimes that comes across in odd ways. So, know I'm not being mean or rude when I say we can't do certain things or my kids can't have certain things. I'm not crazy, I'm not overprotective. I'm just the one who spends the bulk of time with them and I know their needs. I can usually predict their reactions to things. (Usually ;) ). My only goal in life is to keep them alive and healthy and happy. Nothing else matters. Really.
Wednesday, August 24, 2016
I just have too many words.
Yup, themes will be shifting gears here, I've still got to figure out how I want to do that, but - here's a little something about the twins....
They started K this year. It's full day which means I've got a lot of time on my hands now.
This is what I posted on FB the day they started school....
"There were days when we wondered... would they walk, would they talk? What would be Addison's cognitive abilities? Six years ago, they were literally very tiny little embryos growing. Five years ago they were home and we were elbows deep in feeding tubes, counting calories and every therapy service under the sun as well as countless doctor's appts.
We still worried and wondered.
Today, I watched as they walked inside school, hand in hand. Tomorrow, they'll get on the 'big kid bus' and they'll be gone all day.
I'll cry, I'll miss them like crazy, and I'll worry. But above all, I'll rejoice because out of all of the darkness - the infertility, the IVF, the high risk pregnancy and the NICU stay - there has come so much light. So much hope. And growth.
They've surpassed every expectation, every 'should' and 'could', they've defied the odds. And because of that, I'm proud.
This year is opening doors for big changes for all of us, and I'm excited to see where it will lead. For the last 5 years I've been a full time mom - 24/7. I wouldn't change it for the world. But now, I'll be finding myself too, while Addison and Blake are off finding who they are too. Without each other (separate classes) and without me too.
Just remember friends and family, nothing is impossible. Even the word itself says "I'm Possible".
And now I shall go cry myself to sleep LOL."
Tuesday, February 9, 2016
There are still things going on in their lives but as they've grown, I've been finding myself again.
I've promised over and over that I'd get this blog back up and running, but truth is.... I think it's time to just accept reality. There just isn't as much to report.
So with that, I think I'm just going to leave this blog here, check in occasionally, but start pursuing my true passion which is reading books and writing love stories.
I'll still be here for all our preemie friends and will always be around for support. But this is truly on the back burner.
I'm so thankful for everything this blog has meant but I am looking forward to growing
Friday, December 4, 2015
So .... Coming January 1st, I'll be relaunching the blog with all new content and a new design.
I'll still be updating about the wonder twins and all that good stuff, but as they grow, my life has changed so the new look will reflect that. So, until then, pardon the dust and stay tuned.
Tuesday, October 6, 2015
|A Lover's Lament|
KL Grayson & BT Urruela
In a matter of seconds my entire world changed, and it was in that moment that I stopped living and simply began to exist. In my grief, I sent a letter to the first boy I ever loved. I hoped in writing it I’d find some peace from the nightmare I was living, some solace in my anger. I didn’t expect him to write back. I wasn’t prepared for his words, and I certainly wasn’t ready for the impact this soldier would have on my life. A deep-rooted hate transformed into friendship, and then molded into a love like I’d never known before. Sergeant Devin Ulysses Clay did what I couldn’t: he put the shattered pieces of my heart back together, restoring my faith in humanity and teaching me how to live again. But now that I’m whole, I have a decision to make. Do I return to my life as I knew it and the fiancé I left behind, or do I walk away from it all for the only man to ever break my heart?
I’ve been living in hell, but you won’t hear me complain. These men depend on me, as I do them, and this brotherhood is the only family I’ve ever known. The Army saved me from a callous mother and a life on the wrong side of the tracks that was quickly spiraling out of control. So unlike most of the men in my platoon, going home wasn’t something I longed for. I was content overseas, spending my days defending this country that gave me my life back. Fighting became my new normal … until her. A letter from Katie Devora—a letter that I almost didn’t open. Her words put a fire back inside of me that I didn’t know I’d lost. She gave me hope during a time when I was fighting every day just to stay alive, and now it’s time I fight for her.
Buy Links: Amazon | Barnes and Noble | Goodreads
About the Authors:
Taylor Urruela was an infantryman in the US Army from August 2004 until February 2011. At the end of a year long tour in Baghdad, IQ, his vehicle was hit by two roadside bombs, which took his right leg below the knee and the life of his commander. He was awarded the Purple Heart for his wounds, an Army Commendation Medal and Combat Infantryman’s Badge. He medically retired from the Army in 2011 and moved to Tampa, FL where he currently works as a Director and Brand Ambassador of VETSports, a veteran community sports nonprofit he co-founded in 2012. He also conducts speaking engagements and he’s a personal trainer for Tampa Sports Academy.
I'm honored to be apart of A Lover's Lament Release Day and hope you've enjoyed the first peek at this amazing work.
Enter below for a chance to win a signed copy and an Amazon gift card ... Giveaway sponsored by InkSlingerPR@gmail.com
a Rafflecopter giveaway
Edited 11:02pm 6th Oct 2015 -
I have not been compensated for this blog post. OurValentinesDaySurprise is not responsible for this Rafflecopter Giveaway. I'm just a mommy blogger who loves to read, is a fan of BT Urruela, and wanted to support these two amazing authors on their release day. Any reviews given on this blog are of my own opinion and do not reflect any views but my own unless otherwise stated.
Saturday, October 3, 2015
Don't worry, I'll still talk about the twins (and post a very long overdue update). But as my children grow, my focus is changing a little bit. I've got more time on my hands and I love reading so I'll be adding my love of reading to this blog.
Stick around while we're under construction and be sure to check back on Oct 6th to see what my first official release blitz looks like... (you're not going to want to miss this!)
Wednesday, April 29, 2015
Gah.... I cannot believe the twins are four....FOUR. I seriously don't know how that happened. Four years ago we were praying and hoping and wondering if we'd make it this far.
Good news is, we are and we are thriving.
But I feel the need to say this.... prematurity does not end when you leave the NICU. Not every preemie catches up by age two (or three) in spite of what many statistics and clinicians have said. I'm also going to say that, not every preemie will suffer long term delays.
We are still dealing with lingering effects from Addison being born prematurly. I never thought at four years old we'd still be in OT, PT, and Behavioral Therapy.
Has she made huge strides? HELL YES!
Has she narrowed the gap between where she is and where she should be? ABSOLUTELY!
BUT, is she developmentally your average "typical" four year old? Not quite.
Things is though, most of her delays are hiding behind the scenes; mostly. I see it because I'm with her everyday. Her current teacher and her therapists see it.
So as I said, she is still in PT; working on balance, low tone and core strength. She's also in the process of getting orthotics to help with her ankle stability among other things. Truth be told Addison is pretty excited about this because she got to pick out the design and as if there was any doubt, she'll be rocking fairy princesses.
A month ago we added Behavioral Therapy - probably sounds odd for a four year old. But... she has some anxiety and self esteem issues that we are building on. She asks a lot of questions because she is often so uncertain of things. And a lot of time it's on repeat. But it's her way of reassurance. We often spend a lot of time going over social stories to help her understand what's happening.
After being on the wait list for awhile, we've now also added Occupational therapy, again. She struggles with fine motor and motor planning. Some of that motor planning comes into play with the above too. Addison will have a handful of different goals to work towards here.
Truth is, when we went to her OT eval, I had totally been expecting them to add services. But when we walked out, and I had a moment to myself; I cried. Because frankly, it sucks. And I wish that Addison didn't have to struggle.
As much as I don't want all of this to define Addison... it does. It has made her fierce, brave, strong, and probably most of all DETERMINED! And I couldn't possibly be more proud of her. She is constant reminder to me to never take a single moment for granted and to never underestimate.
Her Cleft Palate team was overwhelmingly pleased with her in October and the fabulous news is that her speech is on track. Doctor even thinks we might have gotten away with just ONE surgery. Time will tell.
Up next is Pre K/preschool interviews. We've narrowed it down to two. Unfortunately our district doesn't offer public Pre K currently so we are going to private Pre K to prep both Addison and Blake for the big K!