by Sarah | Dec 3, 2010 | All About Denver, All About Erik, All About Kennedy, All About Molly, Fatherhood Fridays
The holidays are always hard on me. I wasn’t the happiest or sunniest child, and that has carried over to adulthood. It always felt as if they snuck up and hit me in the back of the head, but then didn’t run away but stayed to continue doing it until February or March. There is some SAD to it, mixed with my own general depression/anxiety/obsessive-compulsive traits. Having kids has made it a lot better and I enjoy our Christmases together. As a parent, one of my biggest struggles has been to be upbeat and excited about the holidays throughout the year. Each year, I persevere, yet feel as if I leave too much for my wife to do. Sometimes it’s the way duties are separated in the household, each having mostly consistent roles and chores to be done. But nothing is ever written in stone.
Sadie is a SAHM, so most of the household duties fall to her; like dishes, laundry, cleaning, & cooking. I will occasionally do some of those, but never cooking(I’m a horrible cook). I usually take care of maintenance on the house & cars, do yard work, and of course, go to work daily to support all of us.
But when it comes to administering to the kids needs, physically and emotionally, both of us handle it together. Sadie is a bit more of a nurturer than I, but there are certain situations that I am better suited to address. And as for Sadie and myself, we have mostly balanced each other out well over the years. When I am struggling, she is able to keep from bottoming out. And when she is stressed past the limit, I am able to help her back to even ground.
What is hard about this year, and we try not to focus on the negative, is that our kids are having struggles with things we can’t help them with. We’re both still shell-shocked about Brandon’s preliminary diagnosis of CF, the reality is settling on us slowly, heavily. It was just so out of the blue, we thought to have him tested, but knew that nothing would come of it. I blame myself, but most parents do when something goes wrong for their kids. I know Sadie blames herself too, just a natural reaction. He is still getting high grades, wants to continue sports in the spring, and loves Boy Scout campouts. We think he is happy, or at least as happy as a twelve year old can express.
Angel having complications with her CF is not unexpected, but still is unsettling. How her function can go up and down so fast is scary, and makes us wonder if we’re not watching her close enough. Now she may have strep, although I don’t know the full ramifications of this yet. She gives us no symptoms or complaints until she is already well into sickness. However, she still has the brightest smiles and chatters about everything constantly. She can be read like an open book, but a book that you enjoy so much, you never want to put it down.
Riley is,…..well….we love Riley. As Sadie has posted, she has advanced and regressed at the same time. Riley is a whirlwind at home; usually blond hair flying behind her, fighting with and screaming at her sister, and talking so fast you can’t make anything out. In school, the reports are all saying that she is remaining on task better and learning LOTS of things. Infrequently at home, Riley withdraws into herself and just seems to vacate her body. This is usually when she is peaceful at home(not often). But she is slowly coming around to talking with us(REAL CONVERSATION MATERIAL). And she can be so loving sometimes, that her issues fade into the background.
I’m not saying that we have any more to deal with than any other parent. I’m just saying it’s tough, tough to be everything all the time. I have more respect now for my parents than I ever did before. Being a parent of children of special needs children is a hard job, but I have a feeling it won’t be the hardest thing I’ll ever do. That will be when they grow up and leave their mother and me.
I guess all I am really saying is love your kids. Love their strengths. Love their weaknesses. Love them as much as you can. Special needs or not, we are the lucky ones. Our children are alive and fighting, and we are in there fighting even harder along with them.
Enjoy your holidays!
by Sarah | Nov 15, 2010 | All About Kennedy, All About Me
Yesterday I proudly displayed these pictures as part of my Weekly Winners. One thing I didn’t do was tell the little story behind them. The one that brought me to tears as I was sharing it with my husband.
At the end of our long Indian Summer walk, my little Angel spent the time picking “poofy heads”. After gathering one for her and each of her siblings we moved into the wish making phase of the task.
She pulled them close and took a deep breath. Then she looked over at me and smiled and said, “Mommy, do you know what I’m gonna wish for?”
“No, baby…what?”
“To love you more.”
I’d wish for the same, Angel…but right now it would be impossible to hold any more love in my heart for you, it is so full of love and pride. My beautiful, loving ray of sunshine.
by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Oct 14, 2010 | All About Kennedy
She’s cute.
She knows it.
You can be downright furious with her, and she’ll turn her head, widen those huge eyes and give you a smile that almost forces you to melt into a puddle on the spot.
It’s dangerous.
It’s adorable.
It’s nearly impossible to stay mad, to keep your face even when it’s punishment time. Countless times we’ve sent her to her room for the sole purpose of laughing our asses off once she was out of sight.
From the time she was very tiny she had it. A smile that could knock your socks off. Goofy, bright, toothless.
Even now with a scary overbite (STOP.SUCKING.YOUR.THUMB!!)…
It didn’t matter the struggles she had.
The torticollis, hypotonia, a wrenched up little body…no. None of it mattered.
The kid had big ears and a virtual multitude of ridiculous expressions at her disposal.
She danced to her own music (and still does…only now she makes up words to go with that music too).
Nothing has ever stood in her way. Not
Not even her own self.
Her anger.
Her extreme, ear-splitting, gut-wrenching screams that came from a fresh hell we’d never heard before.
Her tendency to self-injure. Banging her head into hard wood floors, the corner of door frames. Ripping open the skin of her nose.
These moments scared us, and still do even as they’ve subsided into different behaviors. The self-injuries are fewer, and our fears are slightly lessened.
But it’s always been those eyes.
The big, brown doe-eyes like none you’ve ever seen. So ‘abnormally’ large that the optometrist feared she had glaucoma (she didn’t).
Once you mix in those with the smile you forget about the fits of anger.
As she’s gotten older she’s learned how to use them. Widening them, moving the eyes in just the right way. A skill that rivals those on America’s Next Top Model. Let me tell you, Angel’s got “Smize” (You ANTM fans know what I’m talking about 😉 ).
But beyond all of this. All of the surface of my little Angel…
There is strength.
Attitude.
And strength.
With that attitude and strength she has pushed past every hurdle life has thrown at her.
When life gave her torticollis, she forced herself to sit – gaining enough strength to overcome it.
When that turned into being stuck in the ‘airplane’ reflex, she rolled over and started to crawl. Forcing her way through that.
When she was given a left side weaker than the right, and we feared/assumed she wouldn’t walk, or would walk late…she shocked us all (including her PT) by walking on time. It was always shaky, bow-legged, but it was walking.
When life gave her dysphagia, making all forms of eating difficult – she never complained. She never cried out it. She swallowed her food whole. No, not good for her in any way, but she persevered.
With a smile and a scream.
When life gave her tibial torsion on top of her hypotonia, it still didn’t stop her. She kept walking, is still walking. Pigeon-toed and as klutzy as they come (is klutziness genetic?)…but now she runs, jumps and plays like the rest of them. The orthopaedists all say it’s self-repairing, ignoring the fact that her muscles arent strong enough to fix it – but she never lets anything like physical limitations stop her.
Diagnosed with CF.
It was more of a blow to us than it was to her.
She’s been blessed to be (mostly) healthy in the 3 years since her diagnosis. She takes her medicine with a smile, a laugh. She turns it into a game, giggling and laughing, reading and sitting quietly.
One day it will come, when the struggle will be tougher for her, for us all. When she is less “mostly healthy”. When we become familiar with the pulmonary unit at the hospital.
When it does I don’t worry for her spirit.
It’s indomitable.
Angel has had, and will have, her blue days.
But she will always find a smile in it.
As she always had, she will push past this struggle.
If anyone can survive something, surpass expectations, it’s her.
No matter what life throws at her, she will persevere.
I know this, because I know her.
Strong. Creative. Spirited. Curious. Big-hearted. Friendly. Happy. Stubborn. Bright. And always just a little bit (no…a LOT) goofy.
This kid will surpass us all.
Of that I have NO doubt.
I love you Angel…even when you’re on my last nerve.
*****************
*I have been blogging a LOT lately about Riley. Our struggles with school, her behavior from being in school, everything in between. To remind you (and us) that we have 2 other kids, I’ve decided to do a small series over the next few weeks highlighting each of the kids…starting with Angel. I apologize now for putting that song in your head – it’s in mine too 😉
by Sarah | Sep 18, 2010 | All About Denver, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis
Day 06 – Something You Hope You Never Have To Do
My biggest fear day in and day out.
I hope I never, ever, have to bury one of my children.
I hope that Brandon, destined to drive in just a few years, finds and uses common sense. That he has the same instincts I did to never use drugs, to not drink until he’s older. That nothing happens to mar is bright future.
I hope that Riley far outlives and outshines me and her father. That none of her issues cause her problems. That she grows to be a proud and strong young woman.
Above all I hope for a cure.
That Angel never has to wait for a lung transplant to save her life. That she doesn’t have to live her days hooked to machines that force breath into her failing lungs. That they find a cure for even her unique a-typical form of this horrible disease.
I never want to bury ANY of my children.
Yet daily I wonder if I will have to.
I hope to the heavens that I won’t ever face that.
by Sarah | Sep 17, 2010 | All About Kennedy, All About Learning, All About Me, All About Molly, Crap, Random
On occasion the random bullet-filled post is fun. Guess what you get today? The virtual grab-bag of crap…I mean, the bullet-list…so much less defined than a bucket-list 😀
* Riley got sick this week. I called her school on Monday at 10:45AM. Told them her name, her teacher, that she was in PM kindergarten – and said she was sick & not coming in. 2 hours later the school called wondering where she was. SOOOO not working in their favor.
* On that note, I have a copy of a withdrawal letter for her drafted. It’s not set in stone, but we’re meeting w/ her teacher on Monday. Might be an ‘exit interview’ to get our ducks in a row. Informational “what is happening in class” and “this is what’s happening at home” type of meeting. Not sure which way the pendulum will swing after that.
*Our town had it’s street fair this past weekend. Somehow Angel managed to get a pingpong ball into a little fishbowl TWICE. So, “Pingu” and “Nemo” are the new pets around here (pictures to follow soon). If they survive the week I’m going to need to get them a real fish bowl. Right now they’re managing, but I don’t have any proper materials so the water is getting filthy fast. Changing it out daily is not on my list of good times.
* The new season of GLEE is this coming week! YAY. Fall shows make me happy. GLEE, ANTM, Bones and Big Bang Theory I’m anxious to see again (okay, ANTM is already on, YAY). I’ve started watching Hellcats (don’t judge)…and I’m really looking forward to No Ordinary Family, Sh*t my Dad Says, and Blue Bloods (hello Donnie Wahlberg *sigh* – and my NKOTB love goes on – again, don’t judge, you know you loved them too).
* Speaking of shows…oh, how disappointed I am in True Blood. Alan Ball really took the show WAY off course – and BORED THE CRAP out of me this season. When you fast forward through 3/4 of the finale because you don’t give a sh*t about any of the characters – you know it’s bad. Shame on you, Alan Ball. SHAME ON YOU.
* I’m knitting again.
* And (sort of) writing again…more like editing my book based on some feedback I got. Once again I have confirmation from all that have read that my first chapter is great – but I’m still not getting my foot in that door. Oh well, I have a partial out once again (slightly rewritten from what it was), and I’m waiting to send out more until another time. At this time of year I stop pressuring myself to write so much, because it doesn’t flow as easy for me and there’s too much going on.
* Because of JENNIFER, I’ve started watching LOST. Yes, I’m WAY behind the ball, but so is she…and she mentioned it being on Netflix instant-play (which I’d noticed too) and commented that because she was late in watching she had no one to watch with. So, now I’m just about through the first season (would be completely but illness sent me to bed EARLY)…and annoyed at how hooked I am. Simple curiosity has me glued to my screen.
* I have more reviews coming. This will not turn into a review site, but some offers look interesting and I’m taking them when I can. At least one will go on my other site because it’s for a book, but occasionally you’ll see them here too!
* Did you know that there is now LESS than 100 days until Christmas? At the time of this post there will be 98 days until Christmas. Hey, don’t shoot the messenger! It’s a simple fact. How much shopping do you have done? I have probably 1/3-1/2 done already.
* I’ll shut up now. More random posts in the future.
**********
It wasn’t intentional, but this fits into the theme, so I’m tying it to Friday Fragments:
