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.

Miss Abby and all her Stuff.

I have a love/hate relationship with May.

I LOVE the weather improving, flowers blossoming, and the impending signs of my favorite Summer...But, I hate the CRAZINESS that comes along with it.

Abby is a busy, busy, kid. I remember when she was a tiny little 5 lb baby...she just was never still. She hated the swing (too confining), and we had to rock her in a way that may have draped the edges of shaken baby syndrome. Abby was born to go, and hasn't stopped since.

So...due to the fact that Abby is Abby, and I am me...May has mostly consisted of driving, games, and recitals. And...she is not done yet.

Dance Impressions Dance Recital: Abby took a HipHop/Jazz Class at Dance Impressions in Bountiful this year and loved it. She thought her teacher, Hayley, was the coolest person to ever exist because she was a dancer in High School Musical 3 and has met Zac Efron. (I'm not going to lie, I think she's pretty cool too.) Overall, it was definitely the year she has loved the most. She was so cute to watch.

I love this picture, because Abby is telling Blair to "chip-chop" and hurry up with the picture.

Soccer: I am a crazy parent. I don't yell obscenities, but I do yell positive things...the whole game. It usually makes Deakon cry the whole time, which I don't really notice, but everyone else in Kaysville City Limits might. I have to admit though, Ab has really caught on this year and plays awesome. Yesterday, at her last game she stole the ball four times and carried it up the field, stopping just short of scoring each time. After, I asked her why she didn't shoot it, and she said, "my breath just ran out." Blair thought it was a cop-out...

Just Deak, enjoying the game/screaming at the top of his inconsolable lungs.

Abby loves to get in the middle of the piles of kids and steal the ball. She does pretty well at it, but tends to pull a few "Karl Malones" with her elbows.

In the midst of all this, Abby decided she really wanted to try out for competitive cheer leading. I let her, because she has been begging since she could talk (Thanks Maddi). But, I kinda thought the classes wouldn't begin until September (It 2x a week for 2 hours in Bountiful). Nope...it began in MAY. So, she has began cheering on top of her Dance, Ballet, Soccer and Softball. Tee ball and Ballet extend through June, but thank goodness we have made it through Soccer and Dance. Now, she isn't quite sure what to do with her free time, being as she is only involved in 3 activities.

Two Good Mentionables about Abby in May:

*1: She took time out of her crazy schedule to make me this homemade gift on Mother's Day. It was so sincere and sweet of her. I just love it when she is affectionate. Although, she has caught on to that, and is now trying to say things like, "Mom...I love you and you're so pretty. Can I stay up and watch Hannah Montana?"

Ever the manipulator.

*2: We had a MAJOR crisis one evening when her blankie was nowhere to be found. My friend Lisa gave this blanket to us when she was born, and Abby latched herself onto it. It is so tattered and torn, but not a night goes by that she does not sleep with it. It has become even more co-dependant since we took her binky away at oh 3 1/2 maybe...:)
Anyway...Abby had worked herself up into such hysterics that I thought she was going to throw up. She kept saying, "How will I ever live without her?? (Apparently her blanket is female). After a good hour or so of looking, Blair losing patience, and my heart breaking for her, we found it in the backyard on the deck. Apparently Abby had taken it with her to play.

(Swollen red face and her treasured blankie)

This night helped me to see my Abby as the little girl she really is. She is rarely vulnerable or genuinely and non-dramatically upset, and she was truly devastated. Blair thought it was maybe time to take the blanket away, and I disagreed saying that I never will take it from her as long as I live. If Abby wants to take that blanket with her to Medical School to be a "Baby Doctor" she is more than welcome. I will hand deliver it. He didn't argue much about it after that. I doubt he wanted to fight Abby and I together in our crazy hysterical tirades.

Internal Dialogue

I don't know why I'm here right now. I have many cooler things to blog about, like Abby and Deak's recent activities...but instead I'm stuck putting the thoughts I am having down on the screen.

I talk to myself. We all do it, all the time. It's how we learn to regulate our emotions and interact with people effectively. It's relatively healthy, as long as we know the voices we are hearing aren't real, right? I sure hope so.

Random Thought #1

I've recently decided to need to run. I don't know why. I'm not actually sure I can technically get away with calling it running due to the fact that it is pretty much walking. I suck at it, and frankly I kinda hate it. I grew up being told I was slow and ran with an elephant on my back...in a non-sad, real, kind of way. I think the "I'll prove to you what I suck at" mentality comes out in me sometimes, and I have to admit that I do like the way I feel when I'm finished. I feel like I've "stuck" it to the man or something. Whatever.

While running, however, I have the opportunity to think, and seriously I don't think that's really a good thing for me. I already over analyze any piece of information my brain decides to latch itself to. That entrenched tenancy combined with the Jay-z/Tupac influence on the ipod does not produce the most reverent ideas. For example, the other night after running, I let Blair know that I only wanted a third baby when Abby was old enough to take care of it for me - as in like GOOD babysitting age 11/12ish. I really do want another baby, but just not sure I can hold Deak's 26 pounds of butter on one hip while feeding another. Blair was totally down with that idea. So was Abby actually.

Random Thought #2

I am sick of worrying about money. I just don't want to anymore. Blair and I have worked and worked, and tried and tried...and I am so tired. We are in a better position than most of the people in our world, and I refuse to bitch about my string of difficulties concerning money anymore. I have felt strongly lately that it is time (at least for a little while) for me to go back to working full time during the school year. I was recently offered a job at another elementary school, and will be beginning to counsel two schools of kiddos next school year. It wasn't an easy decision; period. Really, is working ever an easy decision? But, it was the right one for my family, and one I will put my heart into. It is not a sad thing; I am lucky to be able to work the same hours as my kids, (being as Deak will be in preschool FOUR days a week next year) and have found two schools who are and will be unbelievable to work with. Many heartfelt feelings have gone into this decision, and I feel hopeful that my family will be taken care of. I just love them too much for them not to be.

Random Thought #3

Sometimes I think parents who have children with specified, researched, special needs are lucky (ie. Downs Syndrome, Turner's Syndrome, Autism). I completely and whole-heartily empathize with their struggles, outcomes, and expectations...but, at least they have a group to belong to. A group of people who can be found in their vicinity. People who can relate and listen and feel for you.

Deak has that with his the Chromosome 18 Registry, but we aren't lucky enough to experience much connectedness with people in our surrounding area. Ring 18 is just so rare. There are only a handful of us who are connected with the Registry. In psychology, we often refer to Maslow's hierarchy of human needs when assessing where our clients/students needs are based. Dr. Maslow has ranked our human need to belong as nearly as important as our primitive based survival needs. We just innately "need" to fit in somewhere. Yes, Deakon is supported and welcomed by all who meet him, but nothing compares to the knowing eye, supportive text, and understanding smile I receive from another parent who has traveled the road Deak and I are on. I also have found that they are the first to offer their service.

We are not given expectations and time lines and weight charts with our Deak. We do not get invited to any special parent groups or activities. He is it. He is paving his own path for his brothers and sisters diagnosed with Ring 18. And, they truly are our family. We love them with as much as we love our own. I have always offered Deakon's medical history to others, and given every freaking resident at Primary Children's (trust me...we've met a lot of students) the opportunity to meet him. I want his face to appear in their minds the next time they hear about a possible diagnosis of Ring 18 Syndrome, and not those awful pictures of precious aborted babies. I want his face to provide hope.

We are not able to go to our conference of chromosome 18 families this year, which has turned out to be a bigger letdown emotionally for me than I expected. That "need" to belong isn't going to get its' annual fill up. It's okay, but I will deeply miss being with my little family and connecting with those who see my Deak as the shining star of our lives. I am so grateful we will be able to go next year.

But, as Frost wrote, and as Deak is doing,...I took the road less traveled by and it has made all the difference.