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.

Anniversary Dating

A long night out together (movie AND dinner) is such a rarity in our home. We appreciated every moment of it.

The Fourth

Simple.
Traditions.
Love.

Today.

Around 4:45 or so this morning I awoke to pans clanging together.  He was cooking eggs, in preparation for the gym. 

He eats a lot of eggs; he doesn't love eggs, but they are practical.  Eggs are cheap, full of protein and easy to prepare. 

My thoughts, initially encompassed with frustration for having awoken, quickly shifted to respect. 

I respect the man I choose 12 years ago and his admirable ability to follow through on things like budgets, diets and workout schedules.

He has quietly stayed close in our life backdrop, giving me opportunities to pursue my dreams and proudly standing next to me as I experience the successes I have needed to feel validated. He is okay without validation; he lets me revel in it while he smiles from the stands.  I wish I could be as strong as he is. 

He is humbly compassionate, never boasting about his acts of service and puts up with my propensity for bossiness and control.  He does things like, make me nachos at 10:30 at night...just because I asked, and because he loves me. 

He is fiercely protective, and glows with pride when his Abby is near.  This past Father's Day, after Blair put on his new Broncos jersey, I watched Abby walk into her room, close the door and return a few minutes later wearing her matching jersey.  She is proud to be his daughter, as I am, his wife.  

I'll never forget the day I sat at his side as we cried together for the pain our unborn son was going to endure in his life.  I watched him pull himself together and never look back.  I'm often credited for being Deak's mother, but I could not do this without this man.  He is the glue.  He is the bather, the diaper changer and the person who patiently sits next to and feeds Deak at restaurants so I can have a break.  He feels every stare, every unkind word and every eye glanced downward in pity deeply; he is just not as prone to the emotional facebook rants as I am.  He loves that boy with all of his soul.

So, today, we will probably grill some hamburgers and watch baseball.  Nothing special.  The butterflies and passion are contained to a comfortable level and are allowed to freely burn on occasion when the bills are paid and the kids aren't around.  We've flown high, and dipped pretty low...yet, we are still here.  

Still working.  

Still loving.

I am grateful for a man who has let me become who I've needed to be, and has given me the two most amazing miracles.

Twelve years later, life is good.

Our love story...

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Happy 12 years babe.

Miracles

I walked into my bedroom a few minutes ago, and strongly felt that I needed to pick up the book on my bedside table and read. I doubted my instinct, turned on Saturday Night Live, and attempted to unwind.

But, the thought came to mind again, so strongly that I could not deny it.
So, I begrudgingly grabbed the book to the bookmarked page (held in place by a postcard written to me by a high school friend who died earlier this year), and began to read.

The book is an autobiographical account of a woman diagnosed with Borderline Personality Disorder...not necessarily a book one might call inspiring.

Nevertheless, inspiration is what I found.

A few paragraphs in, I read this prose, spoken by the writer's Priest in response to her questioning how one stops sad things from happening...

"Miracles," he said, "stop the chain. Miracles turn it around. The miracle of love. The miracle of forgiveness. The miracle of a change of heart. No one can force these miracles on anyone else, not even God. It's called free will. We can choose to be open to these miracles, or we can choose to keep our hearts closed and run from them out of fear. It's an individual choice."

Perhaps the most beautifully written description of the very lesson I have been learning since welcoming my Deak into my arms over 6 years ago.

A blessing of comfort and peace found within the pages of my crazy psychology book.

I'm thankful I listened to that little nudge tonight...

Speaking of miracles, aren't mine pretty amazing?

Today, I feel good.

During the course of a conversation Blair and I were having about life the other day, I said, "Wow. Things seem to be feeling really good right now; more so than in a long time."

Blair, smiled, turned to me and said, "Don't ever say that aloud."

We don't want to tempt fate.

Approximately six and a half years ago, I sat in our living room, on our green fabric couch, on a Sunday evening and repeated something quite similar while relaxing with my little family. 

"Things are just so perfect.  I don't think I've ever been so happy in my life."

We had just found out a few days earlier that a baby boy would be joining us, and we were ecstatic.  We had a new house, good jobs, a beautiful little 3 year old with spunk and we had each other.  

We received the news that would eventually lead us to Deak's diagnosis about 48 hours later, one of the most difficult days of my life. 

One must know bitter, in order to recognize the sweet...

I've had the opportunity lately to self-reflect.  Different situations have allowed me to really dig down deep and decide for myself who I am, and what I stand for.  I have found that I believe in more than I give myself credit for. I've also found that, as usual, I have a long way to go before I get to be the type of person I sincerely want to be. The circle of life has lead to me a momentary point of perfect hindsight; both personally and professionally. I recently accepted a new position at work and as I pondered my history, I recognized how each individual step I've taken has lead me to the place I am today.  You know, sometimes we have those experiences that make us wonder and think "Really? What good came out of this crappy situation?"  I feel privileged to understand the route I was given and am hopeful that I will rely on my past experiences to help guide me in my future endeavours.  I feel lucky to be on the right path for me and for my family. 

I feel so grateful to have had the experiences in my life that I've had.  Yes, we've had our share of "bitter," but man...I understand and feel the sweet at such a greater level because of that. I only hope to do a better job of portraying this attitude to others, especially my children. 

I am grateful for my Deak. I feel inadequate beyond measure on a daily basis, but I do try so hard to be the best mother I can be for him.  I would change Deak's struggles and take away that little Ring Chromosome if I could, but I would not change him.  He is not Ring 18.  I am so lucky to look at him with a mother's eye, as I don't see his imperfections.  I just see him...and my view is pretty sweet.

I am grateful for my Abby and her patience and tolerance for our chaotic life. I heard her chatting with a girlfriend the other day, talking about their self-coined "life-plans."  Abby stated that she was going to "Go to college, get married, have 1 baby at 23 1/2, then continue college because I am going to be a pediatrician who specializes in special needs kids and also works in the NICU. Then, I am going to have 4 more babies; 3 girls and 2 boys." 

My heart swelled with pride as I discovered how much of her "life-plan" mirrored my own history, and then had to quickly brush the tears away as she spoke about her goal to advocate and work with babies like her brother. I just love her so much.

I am grateful for my husband. I watched him lift our big 40 lb Deak up to the top of the slide at the playground last night, over and over and over again. It was a visual representation of the load he carries. Much has been required of this man, and he has responded with positivity and joy. He is the best example I know of unconditional love. 

I guess, I needed to write this.  I needed to put words to the spirit of happiness that has been running through my veins.  I needed to document this sweetness and express my gratitude for it. Are things perfect?  Far from it, but I am learning to not be afraid of what lies around the corner and instead focusing on what I can control and am feeling in the moment.

And right now, I feel good.

Thank Heaven for iPhones.

Or, my life would not be documented.
The handheld video/camera/phone/calendar invention has changed my life!
So, here's life since about March...