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?

Dirty Hands Required

The Requirement: Two weeks ago, we had our annual family yard clean-up day. We didn't give our kids an option. Just told them they are part of the family and we need their help. Youngest is a hard worker by nature and dug right in. Middle child is less enthusiastic, but as long as she had her squirt bottle handy to spritz her perspiring brow, she kept the drama to a minimum. While youngest is motivated by, "Wow! Look how much you have gotten done," middle child prefers "You have 1 1/2 hours...if you get your assigned tasks done in less time and we approve of the work, you are free to go inside and relax." Of course, the promise of a little extra allowance helped, too.












The Results: Bushes trimmed, flowers planted, bricks laid, and...kids who learned the sense of accomplishment that comes with hard work. What is missing from these pictures? Our grass, that is made to endure 100 degree heat, apparently withers into straw under multiple frosts. The company we chose to rescue our lawn uses a low nitrogen chemical, which will keep chinch bugs away, but will not make our grass "golf course green." At this point, I will just take grass!












The Reward: A soak in the hot tub for our aching backs and a treat for our oldest, who had to do his part by being patient and watching too many episodes of retro "Family Feud" on The Game Show Network.

Conversations From The Backseat

My husband and I have been wanting for years to invent a limousine type window behind the front seat of our minivan. Wouldn't that be fun? When the kids are loud and crazy, push the button and zip...all you see in the rear view mirror are mouths moving, but no noise! But, if I had it closed too much, I might miss out on conversations from the backseat such as these:

6 year old: "Mom's hair looked different when I was born. It looked curlier."
10 year old: "Yeah, it was kind of frizzy back then...no offense, Mom."

[The straightening iron was the best thing that ever happened to my hair that rises right along with the humidity levels]

10 year old, to her friend on the way home from dance class: "You know those tapes we have to do our tap warm ups to? Well, my Mom used the same ones when she was little...that is how old they are."
Then, 10 year old to me: "Not that you are old, Mom...just the tapes are."

[For those with a background in dance and who are as "old" as I am, you probably know the ones she referred to. "Shuffle hop toe, shuffle hop toe, shuffle hop toe, ball change, turn..."]


6 year old: "Mom, where are we going?"
10 year old: "Shh...don't ask...I think we are going to play games at Ollie Koala's."
6 year old: "Mom is the best Mom in the whole earth."

[I'll bank that compliment to balance out the other times when I am told I am the meanest Mom that ever lived]

I could go on with more, but you get the idea. These backseat conversations provide a glimpse into the random thoughts that go through the minds of my children. Someday, I hope they will appreciate all the rides from this old, frizzy-haired limousine driver, who if given the chance, would probably opt to keep the privacy window open most of the time.

Today's Favorites

Favorite phase: 6 year old lost his front tooth. The other is loose. He spits when he speaks, but the big teeth can take their time coming in...there's nothing cuter than than that first grader gap! Favorite opportunity seized: My husband was fixing something under my van. Never one to pass up an opportunity to cuddle, our dog...well, the picture explains the rest! Favorite photo from Christmas: because nothing says "Our Family Christmas" like a feeding tube bag on a pole in the middle of the family room. Daddy is reading the Christmas story out of the Bible and everyone's casual dress shows that a. we didn't go to church and b. we embrace the warm climate we live in, even on Christmas. Note the basin nearby as well (oldest has been throwing up for months now...still doing extensive testing to figure out why). We are weary of catching puke and seeing him feel bad. Favorite snack: Wasabi peas! Okay, so you bite into them and you feel like you just sucked chlorinated pool water into your nose, but oh, they are so addicting! Something about the crunch and the rush of the sinus cleanse keeps me coming back for more! There's a guy at our local monthly farmer's market that sells them wholesale, so my friend Monica and I have become regular junkies at his dried fruit and nut table. Okay, so this is not really a favorite...just the reason I need to get off this computer and get some things done around here. This picture is an overdue promise to Sherri, who wanted to see "Mt. Laundry." This is actually a foothill, considering the heights it reaches at certain points in the week. Off to find a favorite download to listen to while I fold! Maybe my new favorite youtube pastor: Francis Chan.