Staycation

Wednesday morning at 6:30 AM, my husband and our younger two children were packed neatly into his little Acura, set for a week in Tennessee to visit Nana and Pops. After hugs, kisses, and last minute checks for important items, I stood on the porch waving, with the dog under my arm. "It's just the three of us now, girl." I said to the dog who looked at me with sympathetic eyes. There was the temptation to worry about their long 10 hour drive, but I whispered a quiet prayer and put those thoughts behind me. I'm not going to waste time worrying about what I cannot control.

In a perfect world, we would all be going to Tennessee on our summer family vacation. We used to take Jake everywhere we went...to the farm, the beach, the snow...he's even been on an airplane a few times. However, the last time he flew was on a fixed wing medical plane, transporting him from the ICU in Knoxville, TN to our local hospital here in Florida. A small cough quickly became pneumonia, turning our 2008 Thanksgiving with Nana and Pops into a stressful event for the whole family. We vowed to never take Jake that far away from home again.

So, with our family in Tennessee, Jake and I are on day 4 of our staycation at home. I have to be careful here not to seem too giddy over our situation. (*varsity jump*) It's not like I would want life to be like this all of the time. The thought of living permanently without my husband and other kids...well, I won't even go there because it sends my thoughts spiraling into a pit of despair! However, knowing they will all be returning home on Tuesday with their suitcases, appetites, and increased noise level...I am just going to (for a little while) revel in the following:

1. The phone rings no more than once or twice a day...usually a telemarketer that I screen or it's a personal call for me!
2. Every morning since the others have been gone, Jake has slept in until 8:00 or later. Unbelievable when you think this is our child who used to be up before the sun on a regular basis! With nobody making noise, he sleeps away and I get to stay in bed to pray, read, and be alone with my thoughts before Jake makes his first peep. Ahh...those teenage hormones are good for something!
3. I have not had to make one meal! Bring on the cereal and frozen foods...those 5 minute meals that require zero work. My favorite, though, are when we get to eat homemade dinners "out." I have such great friends...the kind that allow me to "move in" for the evening with a cot for Jake to lie on...the kind that make me feel like I am not intruding and they would be hanging out like this anyway if I wasn't there...the kind whose husbands give a live acoustic guitar concert for Jake while impersonating everyone from Garth Brooks to Elvis Presley (Tom, your music soothes the soul). :)
4. Remember my stack of books on my nightstand? I have actually read a couple of them and it feels so good to complete something!
5. This is cherished time with Jake. In caring for his usual daily needs(bathing, feeding, dressing, medicating), I can take my time and not rush my way through his routine. More time to do massage and range of motion exercises, all while I sing (very poorly, but Jake doesn't mind).

That's it. Just five things to enjoy until life returns to normal. That messy, noisy, tiring normal that I am used to. Then, I will tuck the dog under my arm, whispering those familiar prayers for patience and a moments' peace...the virtues that are so easily accessible when nobody is here to stretch me.

Madness

Tim Burton's "Alice in Wonderland" is out on dvd. We go to the movies maybe once a year, so I am one of those annoying people that wants to talk about movies months after they leave the theater!

Reading this story as a child, I was always fascinated with the Mad Hatter. There was a lot to like about this strange little man, who spoke in unanswerable riddles and was stuck in the time of 6:00 PM forever. There was also his whimsical appearance...his exaggerated facial features, the large polka-dotted bow tie, and the hat with the label reading, "In this style 10/6," which, by the way, means ten shillings and six pence...the price written in pre-decimalized British money.

Although I found the storybook character appealing, the Mad Hatter's random musings eventually drove Alice away from the tea party and she didn't seem to have any deep feelings for her quirky party host in the original book. Burton's film adaptation changed all this for me, or I should say Johnny Depp's portrayal of the Mad Hatter did. I was deeply touched by the tender moments shared between Alice and the Mad Hatter. Here are a few quotes from the movie to get your heart thumping (spoiler alert for those who have not seen it):

MH: Have I gone mad?
A: I'm afraid so. You're entirely bonkers. But, I'll tell you a secret. All the best people are.
(Like a bohemian romantic, she "gets" his madness and even appreciates him for it.)

MH: Your carriage, my lady.
A: A hat?
MH: Of course, anyone can go by horse or rail, but the absolute best way to travel is by hat.
(Now, that is some sexy transportation, ladies!)

A: Sometimes I believe in as many as six impossible things before breakfast.
MH: That is an excellent practice
(Can they get any more compatible as a couple?)

Stayne, Knave of hearts: If you're hiding her [Alice], you will lose your heads!
MH: Already lost them.
(Okay, so this wasn't a moment between MH and A, but do you see the point? Courage and wit...what more could a girl want in her guy?)

MH: Still believe this is a dream, do you?
A: Of course. This has all come from my own mind.
MH: ...which would mean that I'm not...real.
A: Afraid so. You're just a figment of my imagination. I would dream up someone who's half mad.
MH: Yes, yes...uh, but you would have to be half mad to dream me up!
A: I must be then......I'll miss you when I wake up.
(*sniff*)

And, now for the last affectionate moment before Alice drinks the blood of the Jabberwocky and returns to life above the hole in the ground:

MH: You could stay
A: What an idea. What a mad, crazy, wonderful idea.
*they smile at each other*
A: But I can't.
(Ah, the tragedy of long distance relationships...they will probably always think of what could have been...or at least MH will. He is bound to the hopeless thought that Alice won't remember him when she comes back.)

Am I the only one who was swooned by the romantic elements of this movie? Maybe the extreme Florida heat is causing a little madness in me, but I will take Johnny Depp's Mad Hatter over Robert Pattinson's Edward Cullen any day!

Already?

Yesterday, my daughter had her awards ceremony for 5th grade. She is officially finished with elementary school. How can this be? I remember so clearly, as if it was just last year, taking her for her first day of Kindergarten at the same school. The building looked huge and so did the older kids. She was intimidated about walking from the bike rack to her classroom, so the Vice Principal Mrs. Ford took her by the hand and they walked in together. Mrs. Ford continued this routine for a few weeks until my cautious newcomer felt confident enough to forge the trail on her own.

When I look at this school building now, I see years of growth for Eliza. Six years of mastering subjects, making friends, learning to get along with [insert mean girls' names here], singing in musicals, proudly displaying artwork...all of these experiences have shaped Eliza's character and hopefully provided her with wisdom to handle the middle school years.

I cherish the times I was able to volunteer or chaperone a field trip now and then. I lament the missed opportunities of not doing these things because of a sick child or a toddler to care for at home. It feels as if I have overslept and there doesn't seem to be time to cram in all the things I wanted to do.

Eliza is a follower of this blog, so since she is probably reading this...I just want to say that I am so very proud of you and even when we have our differences, I love you and consider myself blessed to have you as my daughter! You are a creative, kind, intelligent, thoughtful, and fun-loving girl. My favorite thing about you?

That you can be this poised, well-mannered lady when you need to be:










While underneath, lies this crazed, Cheese Superhero Woman!

Simply Celebrating Another Birthday

Jake turned 14 on Friday. Kind of a bittersweet day for me.

The bitter part: In earlier years, I felt the loss of his twin, as we celebrated just one boy's birthday. In recent years, I think of how Jake almost didn't make it to another birthday. There is also the diminished quality of life that comes with each year, which brings less ways of making the day special. This year, it was the cake. We had ice cream cake for the rest of us, but Jake doesn't really eat by mouth anymore, so he only had a couple of bites and then was done. He didn't leave the house that day...in fact, he only had a couple of hours in his wheelchair and he spent the rest of the day on his cot in the family room.

The sweet parts: His favorite thing about his birthday is when people call and sing to him. He laughs, then when they finish, he says, "muh" for more. As they oblige and crescendo into another stanza of the birthday song, Jake smiles and if he had it his way, this interchange would last all day. Other favorites: the grandparents came, Daddy played guitar, and he got some more of those musical cards to add to the collection that he has in a basket in his room.

When I think about it, I really shouldn't get hung up on the bitter parts. It's Jake's day and he doesn't seem to dwell on things lost. He desires love and music. That's it...just sweet and simple.

Filter Sold Separately

When our youngest child was an infant, he babbled like a typical baby, but when he became a toddler, he made strange guttural sounds that only we understood as words. I worried about his hearing, as he pointed to things and said, "Gung gung." People told me not to worry since he had an older sister that was very verbal and understood his caveman communication. I was still concerned at how he sort of just grunted through his days. By the age of three, just when I was ready to call for a speech evaluation, Brennan went from one word commands to speaking in sentences in a two week period of time. It's like all the words stored in his mind released at once and unlocked the mystery behind his slow to speak brain.

Four years later, those words are still flowing out of his mouth and there is no stopping him now! In fact, Brennan is infamous for telling people the food they just made tastes weird or that the haircut they just gave him looks terrible. Most days, I have to remind myself that I ever prayed for those sentences to come. I now find myself praying for Brennan to develop a new skill: that internal thought process that enables him to think, "Don't say that...that is inappropriate...that could embarrass someone (namely your parents)" before he speaks.

I often compare this way of communicating to an unfiltered air conditioning unit. Whatever "air" develops in Brennan's mind, pops out the vent without being filtered for the listener. Like when he over shared with my friend one day and said, "I like to take showers because I don't have to go to the bathroom first, I just pee while I am showering." Or when we were at a large party this weekend, the pizza man came with 8 pizzas, and Brennan exclaimed to the host, "Wow! That's a lot of pizza! How much did all of this cost?"

Fortunately, he just turned 7, so most of the time people laugh and chalk up these unfiltered comments to childish behavior. Other times, they are not so funny, though, like the other day when a teacher asked him if it was a good idea that he put his bike helmet in the trash can and he snapped, "It's MY helmet." Or when another teacher told him he would have to pull a "not following directions" card and he authoritatively corrected her, saying, "Um, Ms. Martin*, they're called, 'please follow directions'cards." After these two incidents in school, he is learning that not talking back makes for easier days with teachers. Signs of progress? Perhaps a thin filter is developing?

In some ways, I hope Brennan's filter does not get too thick. I would like him to use his bold personality for good and I believe his ability to verbalize his thoughts can be an asset one day. I also enjoy this lack of filter when it comes to hearing Brennan unabashedly express his emotions. Like last night, when we took a long walk together and he looked at the sky, commenting, "Mom, look at the sun in the clouds...it looks like Heaven...when I see it, it makes my eyes cry a little." Or when he was sick last week and looked at me with those big brown eyes and said, "Mom, I love you. Thank you for taking care of me."

Whether it is a childish comment, a rebellious remark, or an expression of love, there is a deep honesty in Brennan that I cherish. I am thankful for my child's gift of gab and I have hope for the future purpose behind this answer to prayer!

*name of teacher has been changed
**photo: Brennan, trying on his Pops' glasses at the age of 6

Rabbit Du Jour

This pretty lady in the picture above is the anaconda on display at our local zoo. We were interested to learn that she is fed a rabbit every two weeks and that's it...no other meals or snacks necessary for 14 days! As a mom, I wandered away in a temporary mental fantasy...imagine the time and money I could save if I could just toss a rabbit at my kids every two weeks! Sure, it sounds icky, and I do love working in the kitchen while they hang over the counter, sharing snacks and stories from their school day. But, there are also those nights when it's 6:00 and everyone is cranky and the thought of throwing a small woodland creature at them and being done with it for two weeks...yeah, that's when the snake meal plan sounds appealing.

"Are the rabbits alive?" I blurted out. (I could see my husband's jaw drop open...I wondered if he knew me well enough to know the thought process behind my question...sort of a "surely she is NOT looking for recipes" kind of a reaction).

"Well..." the zoo educator continued (his expression looked as if he was giddy about giving the gory details), "We order the rabbits wholesale and they come frozen. We heat them up, so she thinks they are alive and still suffocates them before eating." He followed this with a wink of his eye and a "don't tell her, it's our little secret."

I used to think the giraffes were my favorite zoo animal, but I have to say this whole anaconda lesson had me fascinated. Don't worry...my kids will still be fed everyday...and I've never even cooked with rabbit. Now, I could go for a Mother's Day dinner made by my husband. He cooks wonderful homemade Thai food with fresh ingredients...never frozen! :)

Going "Journal Deep" Today

We are back home after 10 days in the ICU of our local children's hospital. Not exactly the place that I would choose to have frequent flyer status, but there are good things about having the majority of the staff say, "We remember you and your son." When they know you, there is more compassionate care and a little more respect for parental wishes for treatment of your child. An EZPass to connecting with the doctors, so to speak.

So, there we were...the night before Easter, watching our child, fighting for hours to get air into his compromised lungs. The only way I can describe the helpless terror in my heart during this ordeal is to compare it to watching your child drown in a pool and no matter how hard you pull to get them out, they just keep going under water out of your reach.

As dawn came on Easter morning, I thought about past years of egg hunts, sunrise services, and family pictures in the yard by the blooming azaleas. This year, instead of an Easter basket, my child was given heavy sedation and a Bipap mask to make him comfortable. In lieu of candy, we digested the diagnosis of Mycoplasma (walking pneumonia). In an already compromised airway, the swelling and mucus associated with this bacterial infection is what caused the obstructions and panic of "air hunger." A prognosis of "yes, he will probably get through this, but if there is virus in addition to bacterial infection, he may not be strong enough to fight," was said with tenderness from our doctor who is known for his sincere bedside manner.

This isn't the first time we have faced losing our son. The reality of his condition is that it won't be our last. Over recent years, his health has declined. His bad days outnumber his good days. Pneumonia is always a threat. So are seizures. Just last week, while Jake was hospitalized, one of his classmates died at home after a bad seizure stopped his heart. This is the life of parenting a child with life-threatening conditions.

Okay, I said I would be more honest in my blog...here's some more thoughts that I usually only save for my private journal:

I have realized through parenting Jake that there is a worse thing than losing him...that is watching him suffer. [I don't want to minimize the experience of others who have lost their children suddenly. I can't imagine the shock and grief, especially to lose a healthy child that you assumed you would watch grow into adulthood.] I just have witnessed so much suffering with Jake that I sometimes feel like I have spent years watching him die. I think about his funeral sometimes...how I would want his life and God honored...who I would want to sing at the service...how deeply sad we would be as a family, but how relieved we would be for Jake, who will be given a body that is free of sickness and pain...how he will be in the presence of God and his twin brother. Not that I want to expedite Jake's passing, but the same motherly love that prays for his survival also prays for God's mercy on a body that has been weakened and sometimes tortured by pain and suffering.

Some say we, his parents, are so strong and God must have thought we were pretty special to give us such a special child. Frankly, that statement really makes me want to shove them right back to the Barney show set where this "you are special" nonsense originated!

I prefer the saying, "God does not call the equipped, He equips the called." That is, we are not stronger or more special. God called us to be Jake's parents and He equips us with the strength and faith to trust in His plan. He ordained every day of Jake's life here on earth and He controls when this life is over. This is where the peace comes from...why I can sleep at night. Not that I don't worry or that I never weep or feel cheated. I just believe God is good, He loves Jake more than I do, and I ultimately accept that there is a bigger plan in all of this...even if I can't see it right now.

That's it...there is a sample of the depth I have been keeping hidden in my private journals. Risky for me. Next post will be on a lighter topic such as another trash to treasure creation by my other two children. Why throw away packaging when you can transform it into a knight's castle?