Whole Heart.

Miracles happen.

I know with my whole heart they do.

After a few hours of testing this morning, Dr. Everitt, came into our room with a smile.

A smile even she was surprised about.

With the exception of today, each visit we have ever had with Dr. Everitt has given us similar news: The left side of Deakon's heart was getting bigger to compensate for the hole in the right side, and the hole was not getting smaller. Age "three" had always been the big number...the magic age where Dr. Everitt would decide which procedure to use to close the hole in Deakon's heart. She did not want to see his heart increase in size any more.

Dr. Everitt said hello to Deak, turned to us with her sweet eyes and said, "Guys...the hole is gone."

I was in shock. Deak had had a chest x-ray done at Shriners a few months ago which indicated the hole in his heart was still there.

Now it wasn't.

I told Dr. Everitt that I couldn't believe what she was saying..."I'm not quite used to getting this kind of news," I said slowly.

"I know. I am quite surprised too. I checked all his old photos to double check...the hole is completely sealed and the left side of his heart has returned to it's normal size."

"Wow."

I couldn't say more, the tears were too close. I turned to look at Blair...the tears were pretty close for him too.

Dr. Everitt then went on and on about how much she was going to miss seeing Deakon and his happy spirit. She was going to miss him because he never has to go back....EVER.

His heart is now perfectly whole.

(Deak with the blanket given to him from the cardiology unit today.)

Darius.

Deakon had therapy at Shriners this morning; nothing atypical, just our regular Wednesday morning routine. He spent an hour in occupational therapy, and a half hour in Speech. Both therapists gave great compliments saying how much progress Deakon was making, compliments of which I desperately needed to hear.

Deak and I have developed a pattern of eating lunch in the cafeteria each Wednesday after he is finished, and we were headed in that direction when I heard a voice..."Hey." I turned to the side to see who was calling me, and was unexpectedly greeted with a pair of the brightest, most beautiful brown eyes I have ever seen.

"Hey," I replied, "How are you?"

"Fine. What's his(Deakon's) name?"

"Deakon...What's yours?"

"Darius. What's he in the hospital for?"

I then explained that Deakon needed help walking and talking and so he was receiving therapy. Naturally, I then asked why Darius was in the hospital.

"Ummm...because of this thing on my head....it's called a Halo," as his eyes gazed upwards in an obviously joking tone.

Darius' aid chuckled at his response, and I couldn't help but smile.

It was clear to me why Darius was there. He was a sweet six year old, confined to a wheelchair that had a contraption which held his head in place with his spine; not allowing for much movement and freedom.

I then told Darius I had a six year old daughter, and he wanted to know everything about her and what she was doing that very moment. I could see his need to live vicariously through her, albeit momentarily; his desire to understand that there is a world outside of backless gowns and cafeteria food. His yearning for normalcy.

As we got to the elevator, I mentioned to Darius that I was so glad I had met him today.

"See ya..." he said, and he was off. Off heckling one of the doctors he had spotted down the hallway.

I wanted to stay longer with Darius. I needed to be reminded that the precious life I was holding in my arms was not just progressing well, he was alive - and that was enough. A gift of which I will be reminded of tomorrow as I listen to Deakon's heart beat through the magical machines at Primary Children's.

Deakon meets with Cardiologist tomorrow, and I am awaking at night with panic attacks. Deakon was born with a small hole in his heart, which is not terribly uncommon, but for Deak it is considered to be more serious.

I first learned of the hole in Deakon's heart while I carried him. I was sent to Primary Children's to see Dr. Su, a renowned cardiologist who was going to determine if my son's heart was healthy enough to carry him into our world. Dr. Su was an answer to my most sincere prayers at that time, telling me that not only was my son's heart okay, but after looking at my Deakon's entire body, he felt strongly that the baby I was holding was not just going to survive, he was going to thrive.

It was the first time I had heard that from a medical professional, and my heart burst open.

Fear, Hope, Joy, Faith, Anger, Disbelief....so many of those feelings simmer so closely to the surface each year when I walk through the doors in the cardiology unit. Tomorrow I will most likely find out if Deakon will be receiving heart surgery. A surgery that I have known was possible since the first time I saw his little imperfect heart beating inside his body.

Science and logic lend me their understanding of Deakon's possible surgery; they tell me it is routine and "easy." They tell me that Deakon will be just fine.

But, my heart is just so afraid of a life without his little imperfect heart in it.

Science and logic can provide comfort, but not peace, and my heart was in search of something stronger today.

My heart found what in needed in a sweet little six year old angel boy named Darius, and now can begin on it's journey to finding some peace tonight.

A Little Improv.

Picnic in the Living Room due to the weather's bipolar disorder manifesting itself. I told Abby I was pretending to be on a beach in San Diego. She said, "I am not there because the seagulls will eat all my lunch."

Ever the realist, that daughter of mine.

Abby is also boycotting the weather's behavior by staying in her pajama's all day - hopefully it works. (Okay, I can't lie, I am sitting here in sweaty gym clothes...the weather has left me unmotivated to shower as well.) She has been really cute with her brother lately, as they are able to interact and communicate more now. It is so fun to watch them together.

Deakon thought eating lunch on the floor was the funnest thing he has ever done in his life. He could pull Abby's hair and eat all at the same time. He kept looking up at me and saying, "Num Num Num!" I love his little voice.

Proof lies in the pictures...

(Banging on plate, unaware of camera.)

(First glance at camera - Happy)

(Second glance at camera - Excited.)

(Third Glance at Camera, and he's working it. Try to not notice the fact that he is almost stabbing himself with a fork. I apparently ignored it, and he survived.)

Winter is not welcome anymore, even if that means the seagulls will eat our lunch for real.

*Big Guy in a Little Coat**

*Word changed to preserve healthy relationship with husband.

** This post has been approved by Blair. :)

We are trying to save money lately - you know, due to the "economy" or whatever good excuse the media has given us for our lack of cash flow.

This new found love of money-saving has forced some of our "wants" as a couple to be pushed aside in order to pay for more important things, really important things...like Abby's new-found love of cheer -leading classes, or my forever love of well-carbonated soda and Key Lime Pie.

Blair, being the nice sacrificial father/husband he is, has been reduced to wearing underwear with vampire like slashes through the buttocks, and digging deep into his closet to find appropriate church attire.

If you call this appropriate...

Over the past few weeks Blair has mentioned that he still has some old "mission" suits he's "sure" will still fit, as long as they're "taken out just a little bit."

I guess he forgot how old he was then.

You see, this has been an important discussion because Blair has worn his more recently purchased suit (as in like six years ago) with a hole in the crotch to church a significant number of times. Thankfully other tears began appearing in the seams, so the suit was deemed out of commission, and tonight's fashion show ensued.

And a mighty fine fashion show it was.

OH... how Abby and I laughed, and took pictures (she with her Fisher Price camera), and laughed some more.

At the conclusion of the show, Blair mentioned to me that he "thinks the pants will work."

Abby looked up with a rather disgusted look and said, "Umm yea, they'll work if you call not buttoning them up working."

Poor guy. I think a new suit just might be in order...at least one from Ross.

Sensitivity Chip

We are all wired with some brand of sensitivity chip, or at least I believe we are.
Mine is rather large and cumbersome, and Blair's is somewhat small and shaped in the form of the word ESPN. Deakon's is very measurable...(I woke up to kisses and "Ah La Ya" this morning), and Abby will get in your face and tell you to kiss off if you ask her how her chip is "feeling."

This week I have been doing lessons in my classes at school about feelings. As I was teaching Abby's class about the differences people may have in terms of disclosure of feelings, I mentioned that I tend to wear my emotions on my sleeve. Abby then said in a mocking tone, "Yea...She even CRIES when Scott sings on American Idol...ha ha ha." (A different student then mentioned his mother cries when his Dad is home late for work, so at least I was trumped.)

Abby is right though...my sensitivity chip has seemed to have tripled in size since having Deak. I truly have no control over myself if I am watching someone overcome obstacles, especially obstacles involving different levels of ability. I have cried during several newscasts with feature stories done on an Autistic child making the winning goal, or a young man with Downs Syndrome joining a team sport. I cried today during an assembly at our school when a young Autistic boy stood up with a lead part and participated with his grade level's program with appropriate skills.

This sensitivity chip of mine happens to come with a rather quick trigger - one that can fire bullets I didn't know existed. This has gotten me into trouble quite a few times, and today it was no different. I noticed a "Facebook" status where someone had mentioned that Scott (The blind young man) on American Idol was "killing her" and someone needed to "put some glasses on him or something." A person then commented that she thought he was receiving sympathy votes.

I was lit up.
I had no choice but to comment, and in doing so, probably completely offended whomever wrote the status. But, I don't really care; those people needed their sensitivity chips broadened a bit. A whole lot of bit.

I think I need to attend some sort of 12 step program for people with too much emotion.
Let me know if you find one.

*PS - I take it the Dino Nuggets and Corn dogs weren't that enticing? Hm mm ...I wonder why? I am so happy to make some fun surprises for the winners. I will be in contact soon...

Good People-Good Tag.

I have titled a post like this before, but I feel the need to do so again.
Many of you have noticed a "Craft" tag going around. I am always up for "free" things, and apparently not shy about coming out of my blog-stalking cocoon to become eligible.
Case in point:
My friend's sister has a fabulous blog with recipes and craft ideas, and I need lots of help in this area, so every so often I stop by to see what's happening. Yes, I've never met her, and yes, even though I know it happens, I've never been brave enough to admit my spying aloud.
Well, I did....and entered this contest....and although I was quite embarrassed and called "Crazy Stalker Lady" by my husband, I still left a comment so I could win.
I did win.
Not only did I get my very first apron ever, (and DARLING at that)...I got lunch with two really good people. Good people who drove to meet me because I was at work.
It made me so happy.

So...I am now going to offer the same service to you all...
I definitely do not promise anything exciting, and like I said to Ash, you very well could end up with Dino Nuggets and Mini-Corn dogs...
But, you might not.
You might get some yummy treats....or something else.

The FIRST FIVE people to comment will get something...I will even mail...(oh yea...no immediate family allowed - You get treats all the time:)
*Rule...you must then post it on your blog and play again. If you don't have a blog, that's okay...just re-give in a different way.

I promise you will have fun!!!

Looking In.

I've been kicked out of Deak's Speech Therapy.

To be honest, it probably should have happened a long time ago. I was recently told by his fantastic Speech Therapist, that I "talk for him way too much." She is right.

But, how do I stop?

I know him.

I love him.

And, I don't want him to stop needing me.

I take care of things for him. If I am distracted enough fixing others' issues, most specifically Deakon's, I don't have any time to worry about my own. The problem with this coping strategy is the "Ticking Time Bomb" after-affect. There is only so long one can shove all the personal stress to the bottom of the pile, before the bomb disengages and explodes.

My bomb likes to light a lot of fires lately, and it is not the kind of fire that involves marshmallows and chocolate.

Yesterday was stressful. It was manageable stress, but the fuse on my bomb was very thin by the time yesterday came around, and it couldn't stand the heat any longer. After a long morning of desperate tears, missing earrings and answered prayers, I was called to respond to a Crisis at a local Elementary School. The crisis I was dealing with involved death, and I had to quickly de-fuse my bomb, and "fix" a room full of first-graders. The innocent eyes and toothless smiles quickly smothered any residual heat left over from my earlier explosion.

During this experience yesterday, I got the opportunity to visit with a Grandmother whose daughter is experiencing a possible chromosomal abnormality diagnosis with her own daughter. Another friend (who just happens to be a licensed therapist) was with us as we engaged in this discussion. As we began to talk, I immediately put on geneticist hat, and spoke of my own experience using scientific jargon, and unemotional words. This very perceptive therapist spent a lot of time listening, and after I was finished she said something that I have needed to hear...probably for a long time.

"Jenny, you have become a reluctant geneticist, haven't you?"

She nailed it, and I knew exactly what she meant.

I cope with Deakon's struggles by becoming a "fixer." I research, I write, I understand every single component of his syndrome. It's just what I do. I do it to push away the trauma and emotions I felt, and still feel, coping with his diagnosis. Those emotions I keep very private; they are too dark.

I have often said I wouldn't change Deakon's diagnosis, and I mean that whole-heartily. The heartache, the appointments, the sleepless nights, and hospital visits do not even come close to comparing to amount of love and joy his spirit brings into my life daily. Over this past day though, I have discovered that I still am not quite finished grieving.

I am not sure I ever will be.

The thought of him going to school four days a week next year, being attended to by therapists without my guidance, leaving me all alone is terrifying. I keep telling myself, "Oh, he's not ready for that... He can't do it alone yet... He needs me there."

But, I am comforting me, not him.

The truth is that Deakon is prepared and can handle it. Although I hoover as close as possible to the viewing window, Deak has been wonderful on his own in Speech Therapy. He is learning to "fix" himself, and soon I need to learn to do the same.

(I do love it when he practices "Mama" with his therapist and looks for me in the chair I once sat in during therapy with him. I am pretty confident he will always want me around, even if he doesn't need me.)

Issues.

My computer went psycho a couple of weeks ago.
I had turned it off, and a few hours later it was emitting alarm-like noises which I imagined to sound like the alarms warning of impending bombings.
I have tried to interpret the possible parallels that may have into my own life, but it got too depressing.

So, my computer died and I was without my little friend. Thankfully I have a computer magician for a father-in-law, and although he couldn't make my old one reappear, he graciously brought a new, fancy, and fast one over instead.
I am so grateful. So is Blair. A lot less venting will be directed towards him now.

Many a blog posts have surfaced and been pushed aside as of late...
So, we shall see if I can resurface any.

If anyone cares, besides my mom and dad.