Imperfection.

Dear Abby and Deak,

        I've strived most of my 34 years to obtain perfection. I always had this idea that if I tried hard enough to be emotionally strong, worked hard enough on doing good things and attempted to choose others' needs over my own, life would be easy for me.  I put the weight of the world on my shoulders in an effort to protect you and build the vision of perfection I wanted so badly for myself and my family.

It took me 34 years to realize I had this all completely backwards.

I will never be perfect.  I never was. I feel as if I have needed to learn this lesson several times (and undoubtedly several more) in order to truly comprehend its' message. I am here, as your imperfect mother, trying so much to be this pillar of strength, when I've learned it is my vulnerabilities that draw you closer to me.  It is through our weaknesses, that we learn what we are made of and what we need to do to get up the next day and try again.

It's okay to fail.  It's okay to cry.  It's okay to lose control.
It is all okay.
It's what makes us human.  It's what makes us real.
And, it's what I love the most about life.

Because raw, genuine, unbridled emotion is what makes our hearts beat swiftly and race to keep up with our thoughts. It stirs our passions, and adds fuel to that fire of life.  That, my babies, is the good stuff.  That is the stuff you don't forget.  The stuff that you will long for during moments of loneliness and doubt.  That is what you will hold onto.

That is what I've held onto.

I don't expect perfection anymore.  I don't even long for it.  I will never expect it from you.  I want my arms to be a place of security during your times of weakness.  My arms long to comfort you.  My heart aches to be a place of refuge, until the day you leave this earth.  My love for you is the most pure form of joy I've ever known.  It will never waver, regardless of the curveballs thrown at us.  Your lives are my most defining task and my most genuine source of pride.  You are my heart.

My most sincere wish in this life, and especially this Christmas, is that you never doubt the depth of my unconditional love for you.  Thank you for loving me through all my weaknesses. You will forever be my babies, and I will forever be a place you can call home.

Love,
Mom

Tomorrow.

I have so many feelings today.
So many feelings...

I sat in the sun at the pool yesterday, with my radiantly happy boy snuggled up on my lap.  I rubbed his cheek and he smiled and made his little happy noises.  I know those unintelligible noises that he shares when he is content and peaceful; they typically make my heart flutter alongside his.  But, this time the noises hurt.  My heart broke knowing that he doesn't understand what this week will bring him.  He doesn't understand the pain he is about to encounter, or the set backs physically he is going to have to re-learn and endure.
He doesn't know.
But, I do.

I feel so responsible.  I feel so much guilt.  I know this decision to have the surgery was made factually and appropriately, but my heart carries the burden of the aftermath.  I feel ashamed that I am not only worried about Deak and his recovery, but I am also worried about mine.  Can I handle the load? Can I stay healthy (mentally) and be the mother that Deak needs me to be? Can I balance his growing list of needs with the needs of my Abby?  She needs me too, and she is worried out of her mind for him this week. How can I be all these things for all these people and not feel guilty for taking some moments for me? How will I do this?

I've done this before.  We've done this before.  Maybe my emotions are simmering too close to the surface, but I feel like "before" I was stronger.  I was better.  I don't feel strong anymore.  I don't feel strong today.  I don't know if I can watch my boy in pain again.  I don't think I can do it.  I don't think I can watch him struggle to re-learn the ability to walk after I've watched him struggle to learn it for seven long years.  I waited so long for this, and now it will be taken from him. 

I am leaning on hope today.  I am trying to get out of my emotional system, put on my suit, and function like the mother I have been.  I am trying, but it feels harder now.  I feel worn down.  I feel beaten.

Today. 
Today, I have these feelings, and I will mostly allow myself the opportunity to feel these feelings when I am away from my kids. 
Tomorrow.
Tomorrow, I will shove them aside and press forward. 
 I will.
And, things will be okay.

Control.

As I sat on my couch a few minutes ago, watching Miranda Lambert on CMT, Deak bum-scooted around the corner by the stairs with a funny little grin on his face.  It brought tears to my eyes as he scooted to his cup, stood up by himself, and walked to me, asking me for a drink.
I'm grateful for him and the blue-eyed, curly haired, bottle of perspective he has the ability to grant me, if I choose to allow him to.

Choose, being the operative word.
That guy upstairs sure knew I needed him on Earth with me.

I grew up in a good, but chaotic world.  I did my best to make sense of that chaos by controlling myself in every way I could.  I was a perfect little child.

I'm not sure that little child has entirely let go of that control.
She still needs it.
And, she still kinda expects perfection (especially from herself).

A compilation of several events have given me the opportunity to spend some time in an attempt to figure out the why/how/who's that make me, me.
The only conclusion I've come up with is...I still don't have a clue.

I have written before, and I'll say again, that I am genuinely grateful for the different experiences I've had (both public and private), however challenging they've been, because those experiences have made me, me. I used to think that maybe they've made me stronger, but truthfully, I don't think they have.
I'm not that strong...no stronger than any of you.
I've just become comfortable with smiling through the crap that life hands out to us.

These experiences have given me an opportunity to feel emotions on a level that many do not understand, which in turn, has allowed me to have an ability to relate to others (especially children), who live in a chaos that again, I can understand.  These little bodies I see at work, just want control too.  They are making sense of a world that isn't fair, and are doing their best.  I look into each of their eyes every week, and feel that hurt with them.  Pieces of my heart are given to them as they walk out of my office...every single time.  I love them deeply, as if they are my own, for the two hours I have with them, and hope that they can carry that feeling with them as try to fumble their way through elementary school in their tiny little Velcro shoes.

Lately, those kids I see, and their stories have carried me. They have reminded me that I too, am still doing my best to grasp straws and regain control of myself.  They have helped me to feel like I still have pieces of good inside me to offer others; that maybe all this craziness that has followed me around in life has a purpose.  A purpose actualized every week as I visit with a new set of smiles, sad eyes, and Velcro shoes.

Control.  
I'll continue to look for it, but I'm beginning to understand that I have never really had it.
Letting go of that desire is difficult for me, but I'm learning how necessary it really is.
It is the only way I can heal.

The Chase.

I've sat inside restaurant waiting areas for 6 years, watching other families wrangle with their squirmy toddlers; fantasizing about what my Deak may be doing had he been born with the ability to do those kind of things at the appropriate age.

My heart, though quite healed, still meanders around "what if" land on occasion. Especially around little boys.

Tonight, six years in the making, my hopeful day-dreaming became a reality: we braved Red Robin with the walker.

Deak has been able to walk in his walker for a couple years, but has lacked the endurance to do so for a lengthy period of time. Due to his newfound ability of walking unassisted, the walker has become a tool for endurance walking, rather than supportive walking, and we are attempting to incorporate it more often in his life (he uses it at school daily, as he only method of getting around).

My heart leapt as I watched him cruise through the waiting area mock 90, and maneuver himself inside the small video game area. I privately whispered sincere prayers of gratitude as I chased him around the restaurant while he attempted to join others' at their tables and steal their food. My eyes welled as I listened to his sweet laugh while quickly cruising down the accessible ramp to our car.

I am so genuinely grateful for the opportunity to chase him.

I get to chase my own little blonde boy.

Man, I've waited a long time to say that.

My boy can walk.
He can walk.

I'll never ever tire of it.
Ever.

PS: If you see him coming, get out of the way fast. The crowd at Red Robin have the battle wounds to prove it.

First Day

Both of them.
Gone.
All day long.
(yes, I'm wiping away my tears as I type).

I can truly hardly believe I have a 5th grader, and a 1st grader.
Suddenly all those cliche's ring true...
..."Growing too fast..."
..."Right before my eyes..."
..."They are only little once..."

It's such a different phase of life I'm learning to accept. Abby's becoming my built-in babysitter extraordinaire (she is amazing), and suddenly I'm able to do things, like go to the bank, without bringing an entire circus routine of entertainment for Deak. I can literally just walk in, and walk out.

It's so weird.

Deak is getting so smart and big and mature. He is understanding so much more of his environment and is initiating communication. He purposefully will follow directions and (not) follow directions. He is, dare I say, getting easier. We have finally hit the long-awaited toddler stage of development, and are cherishing the curiosity that has come with it.

He is such a miracle.

Abby is, well, pretty much perfect (unless you are a BYU fan...in which case, be prepared to take some s@*#). She makes her lunches, gets her stuff done, picks out cute clothes, and helps me with her brother more than I could ever imagine any other 10 year old doing. She is, by nature, so nurturing.

I dream of the day I hold her babies.

Hindsight tells me, I rushed too quickly to this stage. I should've been more patient and less worried. I am grateful for this record I've kept, as I can remind my full heart, that they were once little.

And tonight, I need the reminder.

Belong.

There is a popular developmental theory in Psychology based on a hierarchy of human needs. We need the basics; food, shelter and water.  We need to feel safe.  Coming in a close third, is the need to belong.  This need must be fulfilled before one can achieve it's full actualized potential. 

I believe this is true. 

We need to belong.  

We need to fit in, find our nit-ch and feel validated.  

It's almost as important as breathing.

This is where I fit.

Within this circle, there is no judgement or second glances when your kid throws a tantrum, in effect tossing his toys and ipad across the room. 

(Our Ring 18 Family that made it to the conference this year)

Much has been written and voiced over time about the special needs' parents' feelings of isolation.

It is so isolating. 

Physically, and emotionally. 

Regardless of the number of willing friends and family members, we just cannot shift the burden that we as special needs' parents carry.  I can't give away the hours I've lost, flooded with worry, about the life Deakon may need to lead as an adult. I cannot retrieve the lost dreams of retirement and vacations spent alone with my husband. I cannot gently pass along to another, the underlying and constant fear that although I worry most often about Deak's future aloud, I desperately pray that he will live to grow old alongside me.

We had a rough beginning to our long-awaited conference in Texas last week.

In typical form, Deak began getting sick about 5 days before we were scheduled to leave.  The pediatrician and I ran every blood and urine test in the book in an attempt to decipher Deak's fever, to no avail. So, it was assumed the fever would break after the undetermined virus has ran its' course. 

Well, it didn't.

I longingly looked at the other families boarding the plane with their able-bodied children, and my heart swelled with envy.  I cried into Blair's shoulder and shouted in anger, when one of Deak's tantrums ended in his ipad being thrown onto my toe. I was angry and I was ashamed (of myself); quite a combustible combination.

Deak ended up in the ER a few hours after our flight landed, with a high fever that just would not break.  Turned out he had some random mouth virus, that the doctor deemed "excruciatingly painful."  He was prescribed loratab, and we were on our way.  I'd like to say I had it all under control, and on the surface, it probably looked as if I did.

But, I was on the verge of losing my mind. 

One hug from a knowing friend was all it took to open my floodgates. 

Things didn't get better quickly, my poor boy was in a lot of pain for the next 3 days, and he felt strongly that everyone around him should know about it.  Blair and I did our best to tag-team the sessions, but Blair, sensing my teetering on the verge of sanity, really held up most of the load.  I went to dinner with a group of friends the second night of our conference, and in the midst of conversing, just blurted out, "I really think I am going to lose my mind."

She smiled, looked into my eyes and said, "I know."   

Not, "I know" because she could tell, "I know" because she understood, and she had been there.

Belonging; it's what I needed to take myself to the next level and deal with Deak's illness with rationality, rather than emotion.  

Deak began doing a little better Tuesday afternoon, and then really began feeling better by Wednesday evening during our Farewell Dinner and Dance.  Together, he and I danced with our friends and his peers to the aptly suited song, "We are Family."  Deak smiled and laughed, shook his head like Stevie Wonder and clapped his hands.  I silently asked for his forgiveness for being so angry, and nestled him into the nook between my shoulder and neck, where he still so perfectly fits.

He and I, we belong together. 

Even when we are both throwing our own tantrums.

Our entire crew at Morgan's Wonderland.

Deak, loving on his Shelley, and Becky an awesome spirit runner (along with her sister) for Deak's Run for Hope.  She ran the full 5k with her Special Olympic Team!

Remy and I riding the bus together. 

Some of our young adult friends.  The beautiful woman in the purple is living with Ring 18, like our Deak (pretty amazing, right?)  The beautiful gal in the pink, is the reason we have a Chromosome 18 Research Society.  If you want to be inspired, read her and her mama's story here.

My Ab. The 10 year who handles life better than most 30 year olds I know (including me).

The Utah Mom's

Ab and her conference bff's. They are all awesome kids.

Morgan's Wonderland with our group.

Deak actually loves flying. I think the vibrations are soothing to him.  Simple joys.

Deak and his hair twin; an inspiring young adult who has recently graduated from high-school.

Our fave little Ring 18 guy and his beautiful mama.  They are from Canada.

My little family.  I kinda like them.

Forever grateful to this place where we belong.

Is she really 10?

"What's this?"
"Mom, what's this?"
Over and over and over again.
At 18 months, Abby's language skills far exceeded her development, and it was a battle trying to keep up with her incessant need to label everything in her environment.
At 10. She is not much different. Smart, a kind friend, hard-working and unknowingly beautiful.
She's just getting bigger.

She still wants to know everything, and I am often caught off guard with her questions; whether they be deeply religious, or regarding the ancient Mayan civilizations. I'm thankful for google, because she has surpassed my level of expertise.

My Abby is unique. She will undoubtedly do good things in her life. I am lucky she is mine.