First Baby.

When it's late and we're alone, Abby will usually let me hold her. In those moments, which are becoming rare, when I look down at her beautiful eyes, sometimes I still see my baby. My first one. The one who opened my eyes as to what this life is really about. The one who came so early, just because she couldn't wait, and hasn't stopped since. Abby loves it when I call her my first baby...she knows that spot is hers and hers alone. All the hoopla and attention that sometimes surrounds Deak cannot take away the fact that she was mine first. She was my first love, my first tummy kiss, and the first tiny body to take my breath away.

Even though I mention Abby's spunk and stubbornness a lot, lately especially, she has really been growing up. She is so full of unconditional love for her brother, and tries so hard to include him in everything she does. I am so proud of the way she treats him and others, and know her kind heart will take her to all the right places in this life.

Today my first baby is seven and I can hardly believe it. SEVEN? Sounds so old...I feel like the past seven years I have let get away from me too quickly.

Happy Birthday First Baby Girl.

(Age 3)

(Yesterday, after dressing Deak in his new school shoes, and giving him one of her backpacks, she decided to read him a book we have about getting ready for preschool. She decided she's going to "read it to him every day, so he's ready." She also let me know I needed to stay with him the first day, and give his teachers a list of things he "does" so they would know what to do. She's just a little protective...He's pretty thrilled, as the pictures show, and loves Abby more than anyone in this world.)

Sin City.

LOVE going to Deak's conference...and so do they...

LOVE reconnecting with our friends.

LOVE spending time with my family, especially time which included drinking frozen margaritas poolside.

LOVE rooms that include jacuzzi tubs and tvs in the bathroom.

LOVE going to dinner and for drinks with all the "Moms" and being told I was drinking the HARD stuff. (Diet Red Bull) Still haven't figured that one out...

LOVE finding out that Deak is in a Ford commercial and on billboards in Texas...(Ford supports a Golf Tournament for the Chromosome 18 Research Center.)

Love that I got to tell Deak's story to a film crew producing a documentary on this photographer who spends hours photographing our kids. They spoke to Deak and I for nearly an hour and a half...and were in tears by the end. That kid does it for everyone.

LOVE being around our people.

People we never knew we'd need.

People that weren't part of our blanket plan when we decided to have children.

People I could not live without.

They help me feel normal, and okay, and loved.

We swam every day, and seriously could not get enough of the beautiful pools. Each day, new people (not associated with our conference) would come and ask about Deakon. I am pretty used to this, and never mind letting people play with him...as long as they're tactful. Some of the next pictures include a guy from some country in Europe (I'm assuming) swimming with Deak. He had spent some time watching him, and then asked sweetly if he could swim with him for a minute. Much to Blair's protective dismay, I said..."Sure." I quickly learned that when he said "swim" he meant "swim." He had Deak kicking and fully submerged...and Deak LOVED it. It was an interesting experience though:)...

Another mom who wasn't affiliated with the conference and I hadn't met before then. She was having some difficulties with her own son, and when she saw Deak, she was prompted to come and talk.

Abs and one of her two bestest buddies from the Day Program, Kayla. We will be visiting her hometown area next year for the conference.

Some Friends...

Julia: A Chromosome 18 Conference is not a conference with out her.

This is Deak with the oldest living adult I have met with Ring 18...Ashley, 28. Her parents trail blazed alone with her as a child, and now she has restored and increased hope for our son. It was amazing to meet and speak with her.

Deak with Lindsey and Keona...his other two Ring 18 buddies. Yes...only four of us. I told you...Deak's a rare one.

Deak taking part (tentatively) with the group picture of all our sweet kids.

With Emarie, our friend from Utah with 18q deletion. Isn't she a doll?

Abs and Gwen...other bestest buddy.

Remy, Kayla's sister.

The strip was our least favorite part of the trip by far. We did LOVE In and Out, and getting presents at the M&M store...but we only lasted a couple of hours there. The strip is just gross - especially with kids.

So, our trip to Sin City was not filled with a whole lot of corruption - just an overall good time. I treasure this conference and these people. It is always full of helpful information, but more importantly...full of memories and hope I can make it another year.

Thank you infinity to our families for helping us have this experience this year.

Ballet, Babies and Bees.

*Ballet

Abby had her Ballet Recital with Clytie Adams School of Ballet last week. She always loves the performances the best (of anything) and had begged to sign up for ballet next year. I love the graceful attitude and technique they have taught her the past FOUR (wow) years, and will keep her there until she is too busy. I love the values, manners and etiquette ballet teaches her as well...Heaven know she doesn't get any of that at home.

Abby's dance was the Salt Flat Racers this year, and she was excited to be a Race Car Driver, because her Grandpa loves them. It was cute...

Blair and I completely slacked in the post recital gift - giving department. Some girls had dozens of roses...well, mine had some wheat thins and easy cheese from our local 7-11.

She was happy.

*Babies

While Nikki and Curt watched Taylor perform in her very first dance recital, Abby and I got to watch Cam and Crosby. I say Abby, because she really did all the work. She loves babies, and that hard coating that sometimes covers her cute heart disappears when a baby is around. I love it.

Cam and his mischievous look.

Abby feeding Crosby the bottle that he wouldn't take from me. She dangled a toy in front of his eyes to distract him with one hand, and fed him with the other - for about thirty minutes! I was so happy she figured out how to feed him, or we might have had a really angry baby and mommy by the end of the night.

Look at Cros looking at Ab...

I shall not forget Deak, who is always ready for the camera...

*Bees

The player photographed above is a player who Deak and I got to meet at Shriners one day. In fact we met a whole crew of them, but this particular one (Adam, RF) was really sweet and played catch with Deak for a while. I, on the other hand, was rather depressed that I had chosen that day to not get ready to take my son to therapy. A little advance notice of a team of professional baseball players showing up would've been awesome.

Last night, Blair and I decided last minute to take Ab and her friend, Abby to the Bees Game. Thanks to some free tickets from Blair's work, and a Kids Eat Free Promotion...it was pretty cheap too. But, as Blair pointed out, it would've been a lot cheaper had I not ordered a Hot Dog, Nachos, Large Diet Coke, and five scoops of Ice Cream in a Baseball Hat.

Oops.

It was such a fun and relaxing night. Actually, anything is relaxing when I am not lugging my cute little bundle of eating joy - Deakon. I needed a break, and sitting next to Blair and two cute girls was just what I needed. Sometimes, I feel sad when Deak stays home, but sometimes I don't...this was one of those nights.

This cute friend and Ab have been attached since she has moved in a couple months ago. They play so well together, and I don't have to listen to tattling every five seconds - which is making this Summer VERY enjoyable so far.

Road Trip.

By this Sunday evening, we will be here...

visiting these awesome people...

Thanks to Blair's parents, (my in-laws).

They knew we were missing out this year on our annual bucket of hope refill, and generously offered to help us go. We are so grateful, and so excited to go. We can't even stand to wait any longer!

The only problem is the fact that we are driving seven or so hours to get there. Which, actually sounds rather nice, if it was just Blair, Abby and I. But, G -Funk Master Deak has a low tolerance for any kind of music other than Eminem, Black Eyed Peas, and Jamie Foxx's Alcohol. And, when I mean low tolerance, I actually mean HYSTERICAL-Hyperventilating-Face turning red- type of low tolerance.

So, if we come back from Vegas with an unintentional (kind-of) addiction to narcotics and an insatiable love for any kind of alcohol. Don't blame bad parenting and low morals associated with Vegas.

Blame Deak.

Heavy.

Mostly due to my age and my placement in the order of lineage in my extended family, I haven't had the opportunity to attend more than maybe a handful of funerals. With each funeral I remember, I feel different types of emotions and sentiment. Each one bearing its' own significance, and process of learning in my mind. These are the three that keep stagnating around my thoughts today...

When I worked for the division of Youth Corrections, I attended a funeral of a Surenos Gang Member. I escorted some of the boys I was working with at the time (along with a few other counselors) and drove up into the foothills of Bountiful. This particular young man had been shot after an altercation with Police, and it had been heavily publicized...so we were concerned about the funeral turning into reunion/gang fight.
I walked through the Viewing line which was held in a Latter Day Saint Relief Society room, and paid my respects to a family who had lost their son. Their son laid in a casket, dressed down in blue from the rag on his head to the shoelaces on his sneakers. It felt very contradictory for me, knowing what the young man's clothing represented, and feeling somewhat shocked at seeing the blatant use of gang paraphernalia around a room that women used to worship God. The service was touching, and I vividly recall the young mans' little brother, maybe not more than ten, speaking of the love and respect he had for his fallen brother. I could see in his eyes the path his life was going to lead due to the untimely death of his big brother. A path of lost innocence and retaliation. A path he didn't deserve to have to travel. This was the beginning of my understanding of the gray area of life. The part of life that doesn't always fit into the nice box we hold for it in our minds.

My Grandpa Jack died when Abby was small, yet some days the wound still feels freshly open. I spoke at his funeral, which was very healing for me, and I felt I was able to say things that I probably should have said aloud in life. The last time I saw him alive, he was lying in his bed. When he noticed I had come into the room, he began straightening his posture and attempting to hide his obvious discomfort. "Oh, Hi Jenny!" he said in the cheerful tone he greeted me with each time I saw him. I don't recall the words after that, just the peaceful understanding that I was loved by him.
A few years later in a Sacred Room, my Grandpa came to me again. I heard his voice and felt his breath on my left shoulder as I sat in prayer. His words were one of preparation for my future. A future which included a very tumultuous couple of years. A future he was aware of, and wanted me to know I could handle. A future that had purpose beyond my vision. I left again knowing I was loved.

Today, we mourned the loss of a friend. A woman whose kind heart touched everyone she came in contact with. She loved my kids, always being so complimentary of them, and so giving. Each time I stopped by to see Blair during the work day, I would always stop by to see her first. In fact, usually she would spot me out her window and meet me in the foyer...knowing that I carried Deak with me inside my car. She was an avid reader of this blog, and often commented to Blair about her genuine concern and love for our kids. I worried some about posting this, worried it may feel too cliche, but I know that she will be reading this where she is now, and I wanted her to know she too, was so loved.
I had a few moments to myself in the car before picking Blair up to attend her funeral this morning. While driving, a perfectly placed song, playing from a CD given to me by another friend, resonated deeply with the emotions I have been feeling throughout this week, and especially today. Our burdens here on this earth are hard. They are incomprehensibly tough and they are way, way too heavy at times. Sometimes, as this song recites, even too heavy for Superman to lift. I have had those moments, as we all have, and I have gotten through those moments only because I have had people in my life and in the heavens, willing to lift that burden off my shoulders. Even if only for a second.

I want to do that. I want to be better. I want to be the person who focuses more on lifting others' rather than being lifted. Thank you for letting me re-learn this lesson today Kristy...drink a good diet coke for me...

Dream Night at the Zoo.

I usually hate the zoo.

The smell.

The food.

The fact that I can't drink my diet coke with a straw.

But, after a week of worries with Deak, and a special invitation...we were actually excited to go.

And, it totally rocked.

Because of Deak's involvement with Shriners, we were able to attend a "Dream Night" at the Zoo. It is created for families who have children with chronic illnesses or disabilities, and includes dinner, face painting, animal touching, special shows, and character greetings...all for free. I wish I could've captured the bright eyes and wide-mouthed smiles of all the kids there, but you will just have to settle for mine...

This night was really the first time I had seen Deak happy for five days. His fever had just broken the night before, and he still had some after-affects of the rash on his cute round belly. Blair and I were so excited to see how happy he was. This is the first time Deak has been to the zoo with glasses, and it was so clear he was seeing things differently. He would laugh and make monkey noises "Ew Ah Ma...Ew Ah Ma" with each animal he saw...monkey or not. I think he pretty much wanted to touch all their eyeballs as well, because he is really into eye jabbing at the moment.

We had one extra ticket, and were so excited to take my niece Taylor with us. She and Ab had a blast running around together. Taylor was so excited all night, she kept tugging at my shirt and saying, "Jenny, did you see that?" She was also SUPER excited about the bird show, so excited that we got there early enough for good seats and several birds flew right on top of her head.

Deak had his first face painting experience.

And, his first experience touching a boa constrictor.

Ab and Tay were just cute.

Taylor wanted nothing to do with the giant polar bear, Deak wanted to eat him, and Abby just put on her fake smile.

Deak only ate chocolate for dinner. We didn't care.

Look how perfect Taylor poses in every picture...all the while, my daughter is attempting to be eaten.

I like Giraffes, but they were a long walk in heels. (I know, stupid to wear heels, but I hadn't left the home much in a week, and apparently wanted to look nice. Not smart.)

This guy was real mean. He kept pacing and glaring at us.

Look how big?? He wanted to stand the entire bird show. It is quite the arm workout.

Overall, and a hundred pictures later...it was such a great way to end a really crappy week. It makes the time together so much sweeter though...

Suit of Steel.

I pulled into my sister's driveway, knowing Deak hadn't been feeling well. His breathing was quick, much like mine when I'm beginning to feel the heat after a mile or so into a run. I had to work that day. I don't remember why, but I did.
It had come fast, and late in the day. There hadn't been much time to notice anything...and Nikki mentioned she thought he wasn't feeling well.
When I laid my eyes on that tiny ten pound body of my baby boy, I knew something was wrong.

Survival...
As mothers, we have those, you know - invisible survival suits of armor. I envision mine being metal and thick - even bulletproof. It has a helmet as well; I need something to keep my head from spinning out of control. These suits typically come fully equipped with lavishly sewn pockets made especially for our hearts. I have to stick mine somewhere, because if I begin to use it while in survival, the suit of steel is null. The heart is a deal - breaker.

So, dressed now in platinum steel, I drove...fast. As quickly as my Mazda could to see the one Doctor I trusted with my son's life. Because I knew. I knew his life was struggling hard to stay with me. By the time I got to the Dr. Kramer's office it was nearly evening, and my baby was blue. The sound of his breathing that night will live with me forever; shallow, rapid, and barely audible. Dr. Kramer gave me a look, and with a gentle hand on my back, let me know that it was time to take him somewhere else. I said I could drive him. I would be able to make it on my own. Dr. Kramer trusted me and gave me an oxygen tank to support my baby's lungs while we drove. I remember he told me to drive fast.
Blair came soon, and then we left.

There weren't many words during that car ride. Blair holds my heart too closely, and I was afraid of letting go.

The oxygen tank ran out as we entered the emergency room. I held my son as tightly as I could and then they took him. They ran with him yelling things like "STAT" and words I had only heard while watching Greys. I was supposed to be filling out paperwork, but I stopped. And, then I ran. I had to be with him. I ran down past the nurses station and entered a room where 20 or so people were preparing to help save my baby. I held him on my chest while lying on a stretcher...tubes, needles and masks being pushed and poked, and I just held him.

After Deak had stabilized for the moment, they allowed Blair and my parents to enter the area they had placed him in. A man in a white coat entered the room with some x-rays and began saying lots of things I never wanted to hear. One sentence resonated too deeply... "It doesn't look good."
The suit I had put on while driving from Nikki's stayed on through that conversation, but I was lucky. I felt a hole ripping in the pocket where my heart was located, and I knew I needed a break.
When the white coat left, I made up some sort of story about needing to use the bathroom, and I left.
I held my heart open wide, and the pain was/is still too real.
I couldn't lose him now.
Why would you give him to me just to take him back so soon?
Please. No.
I need him.
After a couple of minutes, I fixed the hole and returned to Deak's side.

Deak fought for the next week. Only one night in the PICU, and the next five on the children's floor. I slept on chairs and listened to nurses discuss their love lives outside my door. I saw the faces of parents who were losing their children each day when I ate in the cafeteria, their eyes told me...and my heart broke. That was almost me. For the second time.

Deak was sick last week, and my trauma returned. He had a high fever for four or so days, and then ended up with Roseola. As I waited with Dr. Kramer and his nurses for the testing to be done, (tests that required blood to be drawn from my son's skull while he was strapped to a board) I heard a mother across the hall ask the nurses if they minded if she left the room while her toddler was immunized. My initial reaction was one of irritation, but then I remembered the road I had been on which had required my survival suit be made of such strong material. Material that mother across the hall probably didn't need yet. Material no mother should ever have to rely on.
That initial reaction of irritation turned to gratitude eventually.
Gratitude that I can do this.
Gratitude that the 10 pound baby I had held on so tightly to 2 1/2 years ago, was asleep across my chest, with my arms wrapped around him.
Gratitude that this illness that was plaguing Deak now had been the first in a long time.
Gratitude for a God which provided this suit of armor for me to wear, and gratitude he had made it with some really tough stuff.