Monday, September 5, 2011

Labor Day Weekend in Park City

This has become a tradition that Abby looks forward to more than anything throughout the year.  We love going, together with my family, to a beautiful condo encompassed in scenery that we often take for granted living in our state. 
I tried my best to relax this weekend, which meant I did not stress about picture taking.  I did get a few shots on my iPhone and a couple really pretty ones with the fancy camera that I do not know how to use.

SilverStar Condos, our home for the weekend, and a big sponsor of Deak's Run for Hope











The people who make this fun weekend possible...

We are feeling renewed, rested and anxious to begin our week.
I know it has been a good weekend when I can make a statement like that at the end of it.

I have big kids.

I guess I am at that stage.
The "I don't have kids at home much anymore" stage.
Am I really that old?
Such a large part of my heart left with my two babies this day.  Blair and I dropped Ab and Deak off at school, just two doors apart from one another, and then went on our way.  All of us in separate places.
It was surreal.

Our morning routines have been adjusted to accommodate two little bodies getting up and ready each morning, and I am learning to really love waking up early enough to enjoy our morning together at an un-rushed pace.  Blair and I have been working together to adjust for early morning meetings and after school carpooling, and it is going as smoothly as juggling four crazy schedules can.

We kinda know how to handle crazy in our house though.






So, far Abby is loving her new teacher.  She is a proud Ute fan and has to be one of the most understanding and kind teachers I've ever met.  That is exactly what my Abby needs this year.
Deak took a week or so to adjust to a new class and schedule.  He loves computer time and writing lines at his desk, and will soon figure the rest of this school business out.  His teachers are kind and loving and have done an excellent job of communicating Deak's progress to me.  Abby gets to see Deak at school; sometimes at recess, and sometimes in the hallway or at assemblies.  She tells me each time she sees him, he looks at her a little strangely, then immediately claps and smiles.
I feel so happy that they have each other, and so happy with the choice we all made to have them attend school together.
We will make this an awesome year.
Craziness and all.

Friday, September 2, 2011

Good Things.

Phew.
It's Friday.
And, it is a 3 day weekend.

In honor of the rough week, and despite the fact that my last post was written with a less than stellar attitude, I am taking a really, really long deep breath and focusing on some good stuff.
Because when I choose to focus, I quickly realize the "good stuff" is flowing thick...

*Bath time with Deak:
        If anyone in the world needs cheering up, feel free to stop by and join us around 7:30 most school nights.  It is delightful, and you will hear the kind of joyful laughing that seeps deep down inside your soul.  My Deak loves, loves, loves the tub, and I love, love, love it too.

*Abby getting older:
       Okay, so maybe this week it has been not so much of a good thing, and quite honestly I am scared to death of screwing her up for the rest of her life...but, the getting older thing, as heartbreakingly sad as it is at times, does have it's perks.  I love that we now like similar TV shows; Top Chef Just Desserts, Keeping up with the Kardashians (though that one has required a bit of editing from time to time) and the classic...Real Housewives of New Jersey.  We debate over dessert favorites and ugly cake decorating, discuss how Kris Humphries isn't as big of a doofus as we may have presumed while he played for the Jazz and dissect the different levels of crazy associated with each housewife (Sorry, Teresa G....I used to love you, but you are winning the crazy vote this season in my house).  I like Abby's rational, cute, mom-pleasing moments and I am treasuring them.  Abby has also handled the adjustment of changing schools, walking to/from most days and making new friends better than most adults; in fact, she was even invited to a birthday party the first week of school.  It made her whole entire week.

*Deak's Legs
         We received a note in Deak's school log yesterday stating that Deak had stood on his OWN. He has done this, albeit very cautiously, at home for a few seconds with more stability lately...but, not anywhere else.  I was so excited to hear that he is generalizing his ability to be strong on his legs into other environments.  Deak has also (in conjunction with his knee hopping) began knee walking; he quite literally looks like he is walking around on his knees.  He is so dang close!!  He just needs to work on his confidence level and his ability to balance.  I was able to get him into a physical therapist at Shriner's Hospital that works later hours (and is the one I have wanted for the past three years:), and we begin therapy again in two weeks. I am anxious to see what that little guy is going conquer this year.

*Baby-Sitter's Club Books
           I have a couple of boxes of these priceless gems (somewhere actually around 100). As an eight/nine year old, I would zip through a book in a day, and dream big dreams of being like Stacy (the pretty popular babysitter) and living in StoneyBrook, CT.  Abby is almost finished reading Book #1, and the nostalgia is in overdrive.  It as almost as nostalgic as the TigerBeat (or something like it) magazine I bought Abby who then promptly resigned herself to reading it cover through cover while lying on her bed and listening to Selena Gomez last week.

*Food
 I just like it.

*Utah Football
      It's back.  I love the games, I love the hand-dipped corndogs and I love the time spent doing something fun with Blair. I also love the new Utah line Victoria's Secret has out, and I love the cute new sparkly Ute earrings Ab just got.  I have to say, I do NOT love the quarterback (Jordan Wynn) or his pornstache, or his ridiculous hair.  I kinda hope he blows out his shoulder again (and I mean that in the nicest, least painful kind of a way).
...the end...
I feel better already

Wednesday, August 31, 2011

Days like this...

So, ironically enough, I felt like I've had "it" together lately (whatever the hell "it" is).
You know I've...
worked my 40 hours.
played Taxi-Cab mom.
made dinner nearly every night (real dinners, not even canned chili and Frito's).
done Homework.
went to Back to School Night.
scheduled new therapists at Shriners for Deak (for free, Yay!)
attempted to budget by not buying lunch ever (which includes starving some days).
made cookies, and pies and breadsticks...the domestic stuff that makes me feel like I fit in with the local culture.
taken the kids to do fun things and even planned a little get-together for Blair's Birthday.
I really have done my best to "do it all."
I can do it all.

But, still.
I am missing something.
I feel helpless today.
And, for me...there is no feeling in the entire universe that makes me feel worse.

I just want to be a good mom. Honestly. That's it.
I want to be good at all the other stuff too, but it just doesn't matter as much.
Today...I feel like crap.
Crap.
Period.

Thursday, August 18, 2011

Sometimes, it comes back.

Grief.
Not often anymore, in fact...not hardly ever.

But, there is something about milestones that does it for me.
My baby boy is going to Kindergarten Monday.
Monday.
I can't even type the sentence without streaming tears.

I don't know what the big deal is.
He has gone to school for the past two years nearly every day.
I wish somebody would clue my heart into that rational piece of information.

He is going to have the most wonderful teacher and the most wonderful classroom environment (the mama bear did what she needed to do to ensure that months ago), but still....kindergarten?

Man.

Deakon was invited to his mainstream classroom's Kindergarten Orientation Monday.
I don't think I can do it.
I've stood by his side in pain, held him on my lap while he struggled to stay alive, and watched him endure an endless array of doctors and pokes and needles...
but, I don't think I can do this.

I have surrendered to the acceptance of Deakon's pathway in life.  I genuinely embrace my boy for who he is and look forward to watching him grow and continue to exceed the expectations of others. 
But...
there is just  something about sitting in a traditional classroom with 20 or so little five year old bodies; bodies that effortlessly move and talk and even breathe.  A body that I pray every single night I am living right enough to get to someday witness in my son. 

My heart aches for the day simple things become effortless.

There will be handouts and discussions about homework and parties and classroom rules, and quite frankly, I will be lucky if the Deakster stays still and quiet for five minutes of the discussion (rules aren't really his thing.)  I feel torn between pushing myself (and others) into focusing on the plethora of things that make my Deak similar, and defending Deak's differences and allowing his overall happiness to override and take precedent.
I feel like I don't want to do either.

Does this emotional rollercoaster get easier?
Yes.
It most definitely has.
But, sometimes it still hurts too.

Thursday, July 21, 2011

Ten Toes.

"He is missing some toes."

For some reason, during the midst of learning our son, whom we had grown to deeply love at 22 weeks gestation, was at best going to struggle with significant health issues throughout his then determined short life...that one sentence resonated and stomped on the pieces of my freshly broken heart.

Ten fingers. Ten toes.
Something most doctors quickly celebrate and joyfully proclaim to the beaming father and teary-eyed mother upon first meeting their precious, newly-birthed baby.

I was cautiously joyful upon Deakon's arrival.  I believe a mother can only hear "Your child is not going to live" a couple of times before trauma sets in. As the doctor and his partner were preparing to deliver Deakon, via c-section, I heard my doctor whisper to the other, "She is preparing to have a handicapped child."

Wow, I thought my heart was broken before.

Deakon was blue when he was born.  He didn't cry quickly like other babies.
I didn't get to even touch him.

The nurse whisked him away to be prodded and poked and hooked up to tubes, and my heart stood still.
As she came back into the room, and while the doctors were fixing what they discovered to be a pretty severely damaged uterus (thank you placenta previa), I became fixated on one thing...his toes.

"Did you count his toes? How many does he have?"

Why didn't anyone tell me this? Isn't that what they do?

The nurse, sensing my panic, (as irrational as it must have seemed considering I wasn't even certain Deak was breathing), ran out of the room promising me she would go count and let me know.

Within minutes, she replied, "He has ten toes. Ten. A couple of 'em are just kinda hiding in the back."

Even as I write this, I feel the warm rush of relief run through my veins.
I knew it.
He was going to be okay.

I was not able to see Deakon until my doctor saw me back inside my hospital room and realized no one had taken me to the NICU.  He barged in there, pushing my bed and told the nurses I needed to see my son.

I did need to see my son.
I took one look at him, very much oblivious to the monitors beeping and tubes through his nose and IV taped down to his skull, and felt joy.

"He looks like me," I said aloud.

I noticed others' eyes in the room turn downwards in pity, clearly seeing the differences in his nose structure, noticing the eyes a little more widely set and thin, flat eyelids.
Not me.
I saw the ridge of his forehead and his face shaped more oval than Abby's.  I saw his blue eyes and blond, blond hair.

I did not see DNA splattered with Ring Chromosomes.
I saw me.

He was mine.
He had made it, and I loved him with my entire soul.

Today I was feeling really sorry for myself.
And actually, yesterday too.
I think I have too much time for thinking on my hands; and me and thinking time are not friends.
Plus, I haven't been sleeping.
I just can't.

I sat next to Deak and his mattress island of fun, while feeding him some corn dogs and thought to myself, "I'd really love to have normal problems - like what to make for dinner, or making time to go to the gym."
Not that I don't have those problems, because I absolutely do, I am just craving normal.
Normal. Normal. Normal.
I think my heart is running on fumes.

Then, I saw these.


My boy's perfect toes.
All of them.
I love the way they stick together and push the one out in the middle.

I saw them and I remembered.
I remembered the sharpness of the pain that I felt at the thought of never having the opportunity to kiss those little feet.
And, everything became better.

How could I allow myself to wallow, while my Deak has been the one who has endured?
He has handled this life with happiness and gratitude. 
Gratitude to just be him, and to just be here.

I feel like I constantly have to learn this lesson of acceptance, and on dark days, it can still ride a low tide.
But, not anymore today.
How grateful I am, to get to live with this boy whose patience re-teaches me over and over and over again.

I am grateful for those ten toes and the spirit of truth that has come with them.
 I am grateful for a Lord who believes I have the strength to watch those toes grow old.

Monday, July 18, 2011

Disassociate.

I was watching Celebrity Rehab last night. I love that show; not because I enjoy seeing people struggle, but because I am fascinated and passionate about what fuels ones' hope.  What must we uncover about ourselves and our true intentions before allowing ourselves the opportunity to belong and feel loved?
I know, strange that I look for the answers to those questions via Dr. Drew and a few b-grade celebrities...but, I've never been one to discount an opportunity for self-analyzing. 
Professional hazard.

Dr. Drew, during a group session, discussed the term disassociation.  He described disassociation as an unnatural defense mechanism, learned by survivors of trauma, as a way to cope with the intensity of the hurtful experience they are going through. 

Hmm.

I used that word Friday night while talking to my sister who had come with dinner and a fresh set of legs and arms, willing to hold the Ipad above Deak's head while he cried and whined in agony.

I casually mentioned to her, "You just have to disassociate yourself from this" (this referring to the screaming boy lying on his hospital bed) and I left the hospital room for the first few minutes in about 30 hours.

Disassociate.
Is that what I do?

I've been through heartache before. I've been disappointed, hurt and frightened for my own future.
But, nothing in my life,
Nothing...
Compares to the pain experienced sitting helplessly on the side of a hospital bed, next to my son whose inconsolable cries could not be comforted by even the combination of Morphine, Loratab, Toradol and eventually Valium.
His eyes, swollen from his tears and irrational from the strong combination of narcotics, I could not bear to look into for more than a few seconds. 
It just hurt too badly.

In a quiet moment without nurses, at 4:00 in the morning, I leaned in from my chair at the side of Deak's bed, seeking what hindsight tells me was most likely forgiveness.
The guilt of choosing this surgery, even under his neuro-surgeon's recommendation weighed heavily on my shoulders, and I questioned my decision over and over and over again.
I sobbed my apology to my boy.
I told him that I would do anything to take his pain away.
I told him stories of Lagoon and Bulgy the Whale and the Lady Bug Drop.
I told him how much I loved him.

After a night's sleep that consisted of about 45 minutes, and about 36 hours of listening to my boy's cries, not able to pick him up and hold him (due to restrictions from the surgery), I no longer had the strength to be present emotionally.

I was there.
But, that trusty suit came on and I held him down with the nurses while they cathed him, and comforted him while he hit my arms in anger, and pushed a continual onslaught of buttons on the preschool matching game on his Ipad because his arms were too weak.

I stuck my heart in my pocket and pressed forward, only allowing it brief reappearances on a couple un-planned occasions; one being a momentary encounter with a hospital social worker.

She happened to walk into Deak's room during an especially difficult inconsolable period, and she pulled me aside.
She asked if I had slept
(No.)
She let me tell her my son's story and the medical error that had precedented much of this cycle of hurt. 
(The anesthesiologist gave Deakon 5x the dose required for his surgery, which inevitably lead to an conscious extubation and a tremendous amount of pain due to the fact that they could not give him any narcotics *except a minimal amount of Morphine* until he was conscious and breathing on his own).
She told me, while watching Deakon shriek, kicking and flailing his arms and legs, that what I was going through was difficult.
Then she told me she thought I was amazing.
I turned in response to her comment and said, "Well, I don't think I'm that amazing."
Because never, ever in my life had I ever felt so helpless and weak.
This woman, who I've never met, nor will ever see again, then turned to me, looked directly into my eyes and said, "Well, I know you are."

Validation.
Validation, even from a stranger only briefly sharing your experience, can be so powerful.

Maybe that's why I'm writing about this today.
Maybe I want other parents who are experiencing hard stuff to know that going through surgery (or any kind of hard stuff) with your child is not something to be tracked, or counted, or boasted about.
I hate it.
It is hard.
It hurts like hell.

And, it's okay if we disassociate for a while, because we have been through things with our children that no parent should ever have to experience.
It may not be "normal," but we need to survive.

And, you know what else?
We are pretty damn amazing.
All mothers are.
Even if we need help recognizing that most of the time.

My sweet boy, five days later, is downstairs recovering on his little mattress in front of a big screen TV that has played "Yo Gabba Gabba" or "Go Diego Go" around the clock.  He is smothered with toys and is feeling well enough to control his beloved Ipad and enter and exit out of games faster than a hyenna on meth.  The actual surgery to release his tethered cord (cut the ligament holding his spinal cord downward and putting pressure on his nerves), was extremely successful and proved to be more necessary than we anticipated once the surgeon actually got in there and saw the size of the tendon.

He will recover faster than I.
And, I am perfectly okay with that.

My sweet Abby holding her Deak's hand while he cried.