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.

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.

Abby's Friend Birthday Beach Party

Abby and I had a lot of fun planning and prepping for this "Flip Flop" party.  She wanted to invite lots of friends, so we chose to have the party at our "at the time" (Grandma's) home.  Although birthday parties tend to stress my perfectionist self out (especially two days before Deak's surgery), I think everyone had fun and it turned out pretty cute.

We stressed about the rainy weather until miraculously, two minutes before the party started, the sun began to shine. 

Perfect weather for a pretty perfect kid.

She is Nine.

And, still she is going on 16.

It's hard for me to remember she is nine sometimes; I think it is hard for lots of people who know her well.  Abby has this wise old soul, is keenly perceptive to other's needs, extremely ambitious, and has been planning for her future since the age of 2.

But, this wise old soul can also be a wise-ass, surprising us with her wit and dry sense of humor. 

That's why we love her. 

In my attempt to be economically-minded (which, let's face it, rarely happens), I gave Abby a pedicure and manicure at home.  It turned out to be really fun, and worked perfectly with her new chair.

Later that evening, we celebrated with family at the Brick Oven (Pizza Restaurant) and then with cake at home. 

(Yes, that is a cake with a heart surrounding Justin Bieber's initials...it was insisted upon:).

About a month ago, Abby came into my bedroom, sincerely wondering what she could ask for in terms of "gifts" for her birthday.  She said, "I don't really need anything."  We discussed lots and lots of options throughout the day, and she thought about them.  

That same afternoon, she had made her decision; she wanted to ask our family members to donate to The Chromosome 18 Registry and Research Foundation in Deak's name, rather than receive gifts.

Honestly, I attempted to talk her out of it.  Most of her world revolves around Deak and his needs, and I really like her birthday to be about her, but she would hear nothing of it. That evening she hand-made invitations to family members, stating her request.

It was her choice. Completely.

Deak is one lucky dude to have a sister like her. 

And, I am one lucky mom to have her too.

Blair and I still got her a few gifts, which she enjoyed. 

But, she honestly really enjoyed counting and adding the donations up out loud, putting them inside her donation jar, and then showing Deak.

My heart has never been so swollen with pride.

Abby earned $109.00, which we are mailing off soon.  $109.00 is a heck of a lot of money for a nine year old, and she has had no problem parting with it. 

I am forever indebted to my Heavenly Father for giving me this opportunity to have Abby in my life.  She is a special one and is destined for great things.  She will be a lasting impact on the lives of many people throughout her lifetime, and I am honored to be her mother.

I mean really, not many nine year olds have planned and executed 2 fundraiser events within a year.

She is different, and that's the way we like her.

Happy Birthday, first baby girl.

Fourth of July Weekend.

We've tried our best to pack in it before Deak's big surgery next week. We've swam like crazy, gone to Lagoon a few times, played with lots of friends and gotten a little sunburned.

Perfect Summer Stuff.

The Fourth of July Weekend was no exception.  We were lucky enough to have family and friend in town from Colorado and Texas, and had a great time visiting with all of them.  

This cute little thing, Emmy, was blessed this weekend by her father, Daniel, Blair's cousin.  

Abby was in absolute Heaven.

We then traveled up to Solitude to meet our friends and realized that we have done a terrible job taking advantage of the beautiful state we live in.  Sometimes I just assume we can't do the mountain stuff (hiking is not fun carrying a 40 lb child), but that is my err.  There are lots of opportunities and I need to learn to be more creative when it comes to accessibility. 

 

We had such a wonderful time spending time together, chatting in person rather than through facebook, and throwing in a few jabs at the BYU fan base (which happened to be everyone that was there, other than us:).

We went to a couple parades, preferring the smaller, less marketable West Bountiful parade over the insanity that has become Kaysville's.  Deak wasn't so into the 25 firetrucks in a row blasting their sirens, and decided to sit on the blanket and zone out with the beloved Ipad. Abby, having stayed up until midnight or so a few times during the weekend, was not in prime form either.

Red Robin and Cars 2 became the cure.

We have not really ever taken Deak to a movie.  We tried when he was about 2 on Christmas, and it could best be described as HELL.  So, we haven't dared subject ourselves to the torture again...until now.  

I had my heart set on this experience.  We don't often get to enjoy "typical" family activities together the same way everyday families do, and sometimes I try a little too hard to force it rather than accept it for what it is. 

Blair was skeptical, but coerced into conversion after hearing me plan and discuss this activity for days; to put it mildly, we didn't have high expectations for Deak's attention span or tolerance for the noise/crowd or ability to sit in a seat without squirming to get out every 15 seconds. 

Maybe it was the less than ideal expectations, maybe it was the air conditioning and gargantuan diet coke, whatever the reason...we had a fantastic time.

Was Deak perfect?

No.

Is any preschooler perfect?

No.

He needed to roam around in the middle, when the movie got a little slow.  He often could be found engaging in a (LOUD) conversation with the characters in the movie, "YaYaYaYaYaYaYaYaYaYa...Hehehehehehehe."

But, he really liked it.

And we survived.

And it was enjoyable.

Something so normal and routine for millions of families is kind of like a miracle for us. 

Aren't we lucky?