TGIF...original title huh?

I'm all about savoring every moment, but I'll admit this hot summer thing? I want to skip the last three chapters and be done with it. Which is why I nearly did a cartwheel in the third aisle of Hobby Lobby the other day when I noticed the fall wreaths have debuted. I am ready for a weather shift, and I'm a sucker for seasonal commercialism...especially fall.

We dwell in two places these days--inside in the cool basement or in Papa & Nanny's pool. Bodie actually asked me the other day, "How come we have to wear clothes?" because it's so freakin' hot, I suppose the heat relief of communal nudity sounds inviting to a five year old.  Don't worry. We stay clothed...mostly!

So again, despite my promises I have neglected my poor little blog.  I think if it often, but find so little time or energy to sit down and write.  I cherished having this outlet so much in the first days of Rhys's diagnosis, and so it is somehwhat refreshing to me that I no longer need to come here and pour my feeling and emotions out in a rambling web of words. 

It seems we have developed into a routine, however eclectic that routine may be...sleeping in (if your name is McCall), playing, more playing, a little picking up...not too much, more playing, sleep...repeat.  Oh, the life.

And now a new routine begins.  Football practice began this week, soccer next.  And then...wait for it...school!  McCall in the 2nd grade, Bodie in kindergarden, Rhys will start preschool in October....and me too!  I finally am returning, full-time to BSU.  So as you can see things are about to get even busier around here! Rhys is definitely the driving force behind my return to school.  I never knew what I wanted to be "when I grew up"...and now I do. 

 So a summer round up...

So happy to be an aunt and uncle.  Jaxson is perfect!

Naughty as ever and his monkey antics have prompted some very serious childproofing!!

Zoo fun...or not if your are princess McCall.  It was simply too hot, she was melting!

McCall can finally ride without training wheels...I was sure she would go to prom with them on!

Rosie laid our first egg.  We now have two of our six chickens laying...fresh eggs anyone?

 

Summer, I'm finished with you...good-bye dog days.  Fall...hurry up already would you?!?

Mystery Letter

I got a letter in the mail today.  No return address, no signature.  I'm dying to know who sent it so I can thank them. I know that what we do in our house is hard.  I know that beyond the dirty dishes and loads of laundry, I'm navigating OK and doing the right things for Rhyser and our family.  But it was a great feeling to hear it from someone else.  So thank you to whomever made my day...my week...my existence a little brighter! (P.S. I'm not wanting to toot my own horn...but I needed a public way to say thank you so hopefully this person is a reader!)

 

Dear Melissa,
I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.
YOU ROCK.
Yes, you.
Why are you still looking at everybody else in the room?
I’m talking to YOU.
And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.
And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.
What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.
You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you.
You rock because you spend so damn much time preparing for what look to the world like tiny, insignificant moments. Because you know that there are no such things as tiny, insignificant moments.
You rock because you show your child patience even when you feel nothing of the sort.
You rock because you create a hard shell for the world, but remain tender for your child.
You rock because you have learned another language. Or two. Hell, you even speak Abbreviate – ASD, IEP, DSM, ADHD, ABA, MRI, CT, RDI, GI, ADOS. See?
You rock because you SEE miracles in your child’s smallest victories. Because you celebrate simple successes. Because you know how hard they are won.
You rock because you look out for each other. Because you treat every child as if he were your own. Because you know that it really does take a village to raise a child.
You rock because you appreciate the people who make up that village. Because you see God’s angels along your path – and recognize them for who they are. And tell them how much they matter.
You rock because you don’t ever stop pushing and encouraging and expecting and demanding and believing and celebrating.
You rock because you know how important it is to take time for YOU.
You rock because you refuse to let anyone define your child by his challenges. Because you know there is so much more to who he is than a label.
You rock because you’re not afraid of the label. Because you know that as hard as it may have been to hear, it will be the key to a community for your child.
You rock because you are a different kind of parent. Because you know that just because your child doesn’t have words, that sure as hell doesn’t mean he’s not communicating.
You rock because you do everything you possibly can to figure out what it is that he’s saying.
You rock because when a doctor says, “It’s never been done before,” you hear, “Good, it’s possible.”
You rock because when you get angry, you use the anger to propel you forward. To make waves. To create change. To make life better for your child.
You rock because you refuse to accept complacency – from anyone.
You rock because you talk. Because you change hearts and minds and laws.
You rock because you’re not afraid to think big – really big when it comes to your kids. If programs don’t exist, you will create them. If the system doesn’t work, you will change it.
You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.
You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.
You rock because you know that EVERYONE has something to contribute in their own way. And because you know it’s worth everything we have to ensure they can.
You rock because you respect one another – even when you disagree.
You rock because you seek the advice of those who have come closest to sharing your child’s path. Because you never, ever drown their voices out of the conversation. Because you know how vital their perspective is. Because you know that this IS a conversation.
You rock because you give your child the space to fail – giving them the ability to succeed.
You rock because you function on ludicrously little sleep.
You rock because even when you wake up convinced that you can’t, you do.
I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.
YOU ROCK.

The Vian Menagerie

Yes, we're one of the many crazy families who have decided the backyard is the perfect place to raise a small flock of chickens.

It's embarrassing to be part of a trend - at least for me.

I had planned to begin chicken farming last summer.  But we had so much going on with the remodeling, vacations etc...so we put it off.

Not this year.

We marched down to D&B on Tuesday to pick out 5 of the cutest baby chicks.  Barely dried from the shell, they were a day old and so fluffy.

So welcome to the family...

Attila the Hen (she's mine), General Tso (Rob's), Bronco (Bodie's), Rosie (McCall's) and Pecker (Rhys's).  Yes, one is named Pecker.  I told the kids to name Rhys's for him and they choose Pecker...I started going into why this maybe wasn't the best choice of names, but it wasn't really a conversation that I wanted to continue...so Pecker it is!

Right now they are living lavishly in their brooder in our garage under a heat lamp.  By mid-May they will be big enough to move into a coop in our backyard!

Hopefully, if all goes well we will have eggs by September.

ASF 2012 National Walk

I've been trying to write this post all day. I've promised myself that I will never write something that's important to me unless I really feel it. Well, this is important.

While the days pass with the current of everyday life, sometimes I do forget about Angelman syndrome a lot.  AS has become the annoying relative who is part of your life, whether you like it or not.  You can't get rid of it, so you just deal with it.  I do want to assure you I am speaking not from personal experience with an annoying relative, just a generalization :)

But I will never forget those first days which weighed so heavily on me, when I lost myself for a moment.

Oh how we've changed. Of all the beauty in the world we overlooked for so long.  And my heart is twisting in all sorts of beautiful ways just thinking about it, but mostly it is throbbing with love.

Any attempt at threading words to just how funny, how spirited, how healing Rhys’s existence is...well it seems so small and unworthy. But, I'm used to that. His sister and brother had me slayed from the start.

I can tell you this though.

I have changed. My eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the amazement of the common thread that binds us all regardless of the color of our skin or the makeup of our chromosomes.

How could I not have been aware of this magic?

I’m also so grateful and excited about the generosity of people I had never met, about the magnitude of effect we all possess.  Last year Team Rhyser was a huge success and we are so thankful. 

So we're doing it again--asking for your help, setting out to raise funds for the ASF, an organization that helps make life better for anyone who possesses the magic of the missing 15^th chromosome.

Every dollar given to the Team Rhyser fund supports the ASF  whose mission is to be the national advocate for the value, acceptance and inclusion of people with Angelman syndrome.

Things are changing in our society, but it's only because people are working hard to change stereotypes, to recognize abilities and to tear down walls of discrimination.

So I come to you as a mama.

What does any mom want for her child? Hope. Hope for a successful future, happiness, the opportunity to fulfill dreams.

And when you're told your child has Angelman syndrome, for a moment, you think you have to give all that up.  But we don’t.  

Thanks to the ASF and many others that join our cause, there is hope. We want the world to know that people with Angelman syndrome are doing great things with their wild and precious lives.

I am ecstatic about the potential for what our kids will do in twenty years. The research and clinical trials are so encouraging.  What will the future hold for Rhys and his friends?

Perhaps the best spokespeople of all for these kids are their brothers and sisters.  Bodie and McCall see nothing different, nothing missing or lacking from their brother.  I want the world to see him this way too.

I don't want anyone to ever tell me that my child's dreams are limited because of a missing chromosome.

And so I'm asking you for something. For Rhys. For our family. For all these beautiful capable children and their families and thousands of others.

Whatever you can give. A whole 'lotta $5 and $10 donations went a long way last year. We can do it again.

Join with us in raising awareness and creating more opportunities for individuals, more hope for families.

Two years ago, right now? I had no idea what was in store. How could I ever had known how much joy that little man was going to bring us? I want the world to know that joy. 

Help me do it.

TEAM RHYSER 

Go Patriots!

It happened.  My little man is growing up.  It was a big day around these parts...Bodie's first football practice. 

From the day we found out we were having a boy, I dreamed of he and Daddy running out the door to practice. Football is such a big part of our lives, and its now apart of the next generation.

I remember my parents attending every game, race or meet.  They sat in the stands and cheered us on.  Until you become a parent you don't realize how cool it is to see your offspring doing things.  Cool things.  Grown up things.  I'm not sure who is more excited about this new venture...me or Bodie.  Probably a close tie. 

And while I used to laugh at moms who made insanely big deals out of the this kind of stuff, I made an insanely big deal out of the first practice.  "For God's sake its just practice", Rob said...easy for him to say he's been to a million.  I wasn't invited.  "Just Daddy is going 'cause he's my coach".  Thanks Dude...Mommy's crying inside.  Truth is Bodie needs this.  Last week he was amazing.  He explodes with compassion and love for his little brother.  He's the "middle child"...my little mama-loving, cupcake-baking, monster truck driving, memory-making, comedic homebody and he needs something just for him. To build his confidence, to express himself, to move, to laugh, to meet new friends. He needs this.

So we went on a special shopping trip for cleats and compression shirts.  Yeah, t-shirts would have worked, but he had to have them and I couldn't say no.  He's seen so much football...the kids knows what gear is required.  We have talked endlessly about the fact that this is flag football not tackle football.  He couldn't wait...I couldn't wait. 

He woke up ready to go.  Try telling a four year old he has to wait 7 hours until practice.  Not fun...but he decided that he would help do some cleaning so Daddy wouldn't have to when he got home and they could dash away to practice.  I do feel a twinge of guilt that I didn't tell him that Daddy wouldn't have vacuumed when he got home from work...just a twinge :)

So off they dashed...I begged Rob for pictures...but he didn't comply.  "You try getting pictures while coaching ten 4-6 year olds.  It was chaos and I couldn't swear," coach Rob informed me.  You better believe I'll go paparazzi on him come game time :)

Long story short...he had a blast a practice.  He did jumping jacks, "cause that's what guys who play football do."  His body was sore this morning, but he informed me that he "felt like a million bucks!"

So games start March 10th at Settler's Park in Meridian.  You can bet plenty of pictures will be supplied in the weeks to come.  Go Patriots!

Same s%*t different day

We are still in the hospital. We are still waiting on test results and to have more tests completed. If you test McCall for something, chances ate it will come back positive. So far she has an ear infection, pneumonia in her left lung, and kidney infections most likely in both kidneys. Oh and she has influenza so we are on hospital lockdown, which I think just means that they want to see just how many disposable gowns and masks that they can charge us for. Doctors will do kidney ultrasounds later today to see how their function is and if any damage or abnormalities exist. So fingered crossed these look good. She is on broad spectrum antibiotics until cultures come back to tell us which ones are and are not working. Basically we can't leave until the chest x-ray shows an improvement in the pneumonia because based on all the IV fluids she has been given, they can actually slow down healing. Double edged sword :( She is in pretty good spirits, but at times really confused. It scares me because it shows just how sick she really is. But it's funny too. Yesterday out of nowhere she said "Daddy said Justin Beiber died.". My fad and I almost lost it. When asked about this Rob assured me that he had had no such conversation. So today is more hurry up and wait. And wait and wait.

Miss McCall update

Well I apparently got a little too comfortable in our routine, and just like that we are right were we don't want to be. McCall woke up Sunday with a high fever and chills. Then started the vommitimg of Mountain Dew colored puke. TMI I know. The weirdest part was the abdominal pain she complained about. I feared appendicitis. After consulting with her pediatrician, who by the way is the coolest Dr. in Boise, we decided that a visit to our second home (AKA St. Luke's) was in order. Long story short, since I'm posting from my phones keyboard, lots of tests later, and we have come up with pmenomina and kidney infection. Dr's are kind of baffled at the combination and how her symptoms have presented, but apparently they don't know how us Vians roll! So as it stands we are aggressively treating both with antibiotics. We are hydrating her like no ones business. Her fever is under control for the time being. We will do more chest x-rays tomorrow to address the pneumonia and it sounds like also an ultrasound of her kidneys too. Stay tuned. To top off an already lovely day...now Bodie has a fever of 103 :( You might have to visit me at the funny farm after my nervous breakdown.