Ten!!

I keep thinking I need to write something profound about Kendall turning 10 in just over a week.  I really have nothing profound to say other than just writing about my personal experience raising her.

10 years ago I was pregnant and pretty miserable at this point.  It was hot and I was huge.  I was naive in thinking that I'd have this "perfect" typical little girl.  She'd likely play soccer with bows in her (braided) hair, she'd ride horses like I did,  she'd dance and be a cheerleader.  Oh and on top of it all, she'd be an honor student as well....DUH!!!  She'd fill in my gaps......boy just thinking that was the biggest mistake ever(with any child)!  We'd have mani/pedi dates and lots of shopping trips to the mall together(this one came true, she loves to shop).  My little, so called perfect, life would continue. 

All I can say is the moment she was born my world stopped and did a 180.  She was born and the labor and delivery room went dead silent.  The thought of the silence gives me the chills to this day. I can still remember my OB's first words, "you have a very small baby".  She was 8 days late and only 4lbs 8oz and 16.5 inches.  All my tests had come back completely normal during my pregnancy, including my ultrasound, so this was completely unexpected.  From the minute my OB said those words, I knew something wasn't right.  Soon she was whisked away to the NICU and it was just my OB and I left in a very quiet room.  There was a sense of dread in the air, not excitement or an ounce of happiness,  and no one knew what to say or think.  I remember being exhausted and falling asleep somewhere around 4am with her still in the NICU and waking just before 7am to our pediatrician coming in to talk to us.  He mentioned they thought she may have trisomy 18(which turned out was NOT the case.).  I had no clue what that was but it was clear it was bad, very very bad and VERY sad.  I felt like I was waking up from a bad dream and like this couldn't be happening to me.  Yet clearly, it was.  A few days later we got the diagnosis that she had a very rare chromosome disorder(2q deletion to be exact) and really no one could tell us what to expect. 

At the time of her birth I knew my OB and her pediatrician, as far as Dr's were concerned, that was about it.  I'd soon come to know the world of GI doctors, endocrinologists, cranial facial doctors, neurologists, general pediatric surgeons, nurses, geneticists, physical, occupational and speech therapists(I may be forgetting someone but you get the picture).  Overwhelming?  Yes, very much so.  I pretty much had the numbers to her pediatrician, Good Sam and Lucille Packard memorized and for the first 18 months of her life I would spend them mostly in therapy appointments for her and at doctors appointments.  I would learn how easy it is for typical kids to do things and how unfair it was that she couldn't do them as easily.  I would learn all about feedings, NG tubes, CT scans, MRI's and what it was like to sit waiting as surgeries were performed on her(the wait is GOD AWFUL BTW).  I would learn that the beeping machines continue all through the night in hospitals and I would learn what each different beep on the machines meant.  I would learn that some people might think I was doing too much and that she would be "just fine" and others may possibly think I wasn't doing enough.  I would learn I needed my own therapy to deal with all of this and that Dan dealt with it all much differently than I did.  I would also come to learn that Kendall likely saved our marriage, if not she DEFINITELY strengthened it and she likely saved me from myself too, in so many different ways.  Most of all, I would learn that Kendall's spirit and smile, even at 6 months old and weighing only 8-9lbs,  would light up a room and clearly she was much stronger than I was (nor ever will be).   


It took me awhile but I knew I had to step it up as a mom or I'd end up failing her and spending my life very sad, lonely and depressed.  As the years passed I watched her crawl, walk, run, start to talk and do many more amazingly awesome things.   All milestones were met much later than other kids but it didn't matter anymore.  I watched her personality grow and began to realize she's got a pretty great sense of humor and an even better and bigger heart than I had ever imagined.  I also realized I was still learning a lot from her.  Before I had her, I got pretty much everything I wanted in life.  Some would say I was spoiled, but really it wasn't all handed to me, I worked my butt off for a lot of it.  However, I was selfish and likely lacked some compassion and love.  She was teaching me love and compassion without even knowing it.  A few years later I had the boys, it was then that I realized she taught me to have way less expectations in terms of who they might be in life and to just enjoy them every day.  That alone was such a HUGE gift.  Don't get me wrong,  I do have expectations of them in terms of how they treat themselves and others, it's not like I expect nothing of them in life. But, to just go with the flow and let them be who they want to be was a pretty great feeling.  I was really just able to take in and enjoy how easy it was/is for Brady and Chase to hit each milestone, more than if I had never had Kendall because I now knew how hard it was for some to reach those milestones.  I watched as she taught them compassion too, they probably don't even realize that's where they learned it.

The past 10 years were NOT easy and our lives are not perfect by any means.  I spent way too many years being very sad about my ideas and expectations of who Kendall would be not coming true.  What a waste of time being sad over that was, but it's part of life and grieving.  I have now let most of that go because she has taught me that who she is now is SO much better than who I wanted her to be(wait isn't there a country song about that?).  I like to think our family is very typical yet in some very non typical ways.  In our family we love, argue, apologize, have overbooked schedules and likely don't eat enough home cooked meals just like many other families these days.   However, we have been given the gift of Kendall who has taught us to slow down, don't take things(especially life) for granted, have compassion, love more(even when you don't want to) and most of all laugh and just keep going.  10 years has flown by and I am so proud that I was chosen to be her mom.  Mostly I'm just completely amazed that God or some other higher power saw that I was good enough, strong enough, mentally and physically fit enough to be her mom, I would have never picked selfish old me.  Yet someone did and 10 years later, I can see the reasons why so much more clearly.  Happy 10th birthday( a bit early) Miss K.  This family loves you and has your back forever and ever AMEN(another country song in case you're wondering).

And now for the photo bomb, you've come a long way baby!!!

Introducing Kendall Elizabeth Graff, 4lbs 8oz and 16.5 inches

Kendall 2 days old, they had an IV in her head cause her arm veins were too small

We use to call this the fighter pic.  Her fist was ready to fight and take on the world!

Just shy of a year

Just over a year old here, a couple weeks after major surgery on her head.  I tried to pick a "tame" pic to show her scar and stitches.

Age 2 in Italy

 Age 2 and still in Italy with Daddy

                     

K's 3rd b-day

                  

Still age 3: Thank goodness the NG tube was short lived

Halloween 2006, Age 3

 
Age 4, in case you are wondering ;)

Cinco De Mayo, age 4

This would be age 5

Disneyland Sept. 2009, Age 6

First Snow White sighting, Sept 2009, age 6

One of my favorites!

Age 7

Age 8

K's 9th birthday



Age 10 pic to come.  I'm not rushing these last few days of 9!

                                                     

HOPE AND JOY!

Tonight we went to church(who would have thought 2 years ago I'd be going to any sort of church service ever in my life!).  The subject was hope and joy.  I got up and briefly talked a bit about my experience with hope and joy.  It went something like this(and I'm putting in in purple for Kendall).

Hope And Joy

Kendall was born and my life went dark really really dark.  I cried for a year, every.single.day for an entire year.  That’s a lot of tears.  I couldn’t breathe, I didn’t want to move but I forced myself to.  Forced myself to take a shower, to take a walk, to just breathe, to get dressed…it all felt like a HUGE chore to say the least.  2 weeks after Kendall was born Dan went back to work.  I still couldn’t breathe, I wanted to run away and never have to experience the pain I felt.  This was not how my life was suppose to be.  I was not suppose to have a child with special needs.  Why me?  I was mad at life and at God.  I couldn’t understand why this happened to me.  I had no hope, no light, no joy just pure sadness.  I also had postpartum depression that went undiagnosed because people expected me to be sad about everything.  I had horrible visions of bad things happening to Kendall and I was just so so so so so very sad.

Then when Kendall was somewhere between 8-12 weeks old she smiled at me.  Hope creeped in and a second of joy and happiness came over me while I snapped 8 million pictures of her(it’s what you do with your first child).  

More days passed and I cried and cried, I would call Dan in a panic at 7am saying I couldn’t do this, I didn’t want to do this, I didn’t know how to do this, I was terrified.  The type of terrified that makes you just freeze up and again be unable to move.  Hardly any of my friends had kids so I couldn’t call them and even if I did what would I say?  Please help me get out of here, this is not the life I hoped for?  What kind of mom would say that?

Kendall turned 7 months old and Kendall sat up.  Hope creeped in through the darkness, more pictures ensued.  

She turned a year and the day before surgery on her head we threw a HUGE 1^st birthday party for her and probably 50+ people showed up.  People had hope and they were joyful.  I looked hopeful but was scared out of my mind for the surgery.  I went through the motions of the party and felt hope and joy from others but didn’t feel it myself.  Surgery came and went and Kendall recovered.  I felt relief and a touch of hope and joy.

  

She turns 15 months and crawls.  Hope sneaks in again and I feel JOY.  For many many days and likely for the first time in 15 months I felt joy.

I no longer cried every day but I still worried all.the.time about what she would do in life.  Would she ever walk or talk or live a happy life?  2.5 years pass and she wears braces on her little ankles and she starts walking…more hope leads to more joy and HUGE RELIEF.  

Then one day we are in line for Starbucks, just her and I, and she says what sounds like “Mommy look at that big truck”.  I think I’m losing my mind in hearing what she said and I slowly look over and sure enough there is a huge Mac truck and I say to myself “holy crap, no one is here to witness this but she just said a 5 word sentence and I understood it”.  Hope prevails and JOY PURE JOY enters.  

Fast forward many more years and she’s opinionated, adorable and at times quite difficult.  She yells at me, she spits at me and she laughs at me when I don’t want her to and I hold on to hope, HOPING that I make it through her pre-teen and teenage years without completely losing my mind.  Then today, on a day when I want to just get away from it all, I leave the house and she yells “MOMMY” and I turn around and she blows me kisses and tells me she loves me and JOY WINS.  

There are still dark days at times but they are much less often.  Certain things trigger dark days, IEP’s, her birthday, the end of the school year, friends announcing pregnancies or births that went right.  And on those days I lay in my bed and sulk but know that throughout it all those little glimpses of hope turned into joy and all will be ok.  Hope peeks through no matter how much you think it won’t and joy is on the other side.  You just sometimes have to go through pure hell to get to the joy.

I'm doing something right!

The IEP is over and done WOOHOO! All around great news about Kendall however every year they suck 4-5 days right out of me. The anticipation leading up to them and then the meltdown after even when it's good news because in all reality if there were no issues with Kendall we weouldn't have an IEP. Seriously, I skipped boot camp and riding yesterday just to have a mental day off....they wipe me right out! Her teacher said all wonderful things about Kendall including how sweet, caring and compassionate. Which leads me to this story:

I came home yesterday and Dan told me he stopped by her school to drop something off for her. While he was there she was out playing for recess. We never really get to see how she does at school because if we volunteer it totally distracts her. Dan finally spotted her on the playground and watched as she played. She was running round and round the playground with a bunch of kids and Kendall was at the back of the line of kids running around. They went around once and a little girl fell down. They went around again and every kid passed the girl who fell and was crying. Kendall spots her, stops, goes up to her to see if she is ok, pats her on the back, runs to the teachers who are talking and don't see what is going on, pats the teacher on the side and says COME COME COME! Teacher follows Kendall to the little girl who fell and is still crying and they help her. All this time not one other kid stopped and they are all still running around. If that is not the most heartwarming thing ever I don't know what is! Seriously, warmed my heart and if we are doing anything right it's, in my eyes, teaching her one of the most important things in life and the thing that so many people are missing these days....COMPASSION!!! I know how compassionate she is but to know she is like that when we aren't around is the BEST FEELING EVER and just made my not so great day yesterday so much brighter!

PERFECT!!

This one is for the girls/women out there: young, old, short, tall, blonde, brunette, big, small, athletic or not.
STOP JUDGING
STOP COMPARING
STOP UNDERESTIMATING

YOURSELVES!

"You're so mean when you talk about yourself
You are wrong
Change the voices In your head
Make them like you instead"

http://www.youtube.com/watch?v=K3GkSo3ujSY

Music To My Ears!

Dear God,

This is going to sound a little strange at first but hang in there it will make sense! Thank you, thank you, thank you for giving Kendall one good ear with just a minor hearing loss. Yes, I'd prefer her to have 2 ears that could hear just like most other people in the world. However, the fact is she has one that is profoundly deaf and there is nothing we can do about it. But the other ear, the good ear, thank you for it. I am so happy that she is able to hear music. That girl LOVES music! Tonight, as we were driving home from dinner, Kendall was happily listening to Billy Joel and singing along quite loudly. That is music to my ears! It makes me laugh and smile! While you can't understand every word, or even every other word for that matter, you know she for sure is singing along to Scenes From An Italian Restaurant by the "whoaoo whoaaooo whaoooooooooooo" which happens to be crystal clear when she is singing!!

Now if you aren't familiar with the song then you must be young or maybe I'm old. It's one of Billy Joel's best. Here it is for you:

http://www.youtube.com/watch?v=po252Jj7P9Q

Kendall, keep on rockin' out! I love you so very very very much!

Dance!!!

I've been pretty speechless lately at least in terms of this blog. Busy with kids, work, life, the holidays and the list goes on and on. Then today I got an email that reminded me of how lucky I am to have what I have in life. Let me backtrack a few months....

Last April a neighbor/friend of mine had started doing bootcamp. She had steadily been losing weight and was looking great. I was not feeling great. I was feeling like a mom and just a mom, a tired mom with 3 kids, adorable and lovely kids who are the greatest thing in my life but I wanted to feel like more than just a mom. I was missing me a bit. Missing the me that used to take time out and do things for myself. I had taken one major step a few months earlier to getting the old me back. I had started riding again after a 7 year break. I LOVED that I was back to riding but I was exhausted every time I rode and frustrated that I wasn't where I was 7 years ago in terms of endurance etc. I just wasn't feeling fit. Since I had Chase I would start working out and then stop and then start etc. I just didn't like working out on my own.

So, I finally took the plunge with my neighbor and signed up for a month of bootcamp and have been doing it ever since without looking back. I have met amazing ladies who have done nothing but encourage me to keep going. My entire body has changed and every now and then someone says "Wow the weight has melted off of you". That of course makes me laugh, I wish weight melted off of me but it doesn't, I've just worked REALLY hard since April, 6 days a week(most days getting up at 5am to go workout)to get to where I am. In April, I could barely run around the block and by October I was running a 10K without stopping. In April, I could hardly hold plank position for 40 seconds. Last I got timed I held plank for over 2 minutes. So I've made a lot of progress and I still have a ways to go. I've lost some weight and a WHOLE LOT of inches because of this. I feel really good and really strong. Definitely stronger than before I had kids, that is for sure!

About 2 months ago, I started playing a game based off a book called the "Game On Diet". To make a long story short(er) you get points for doing different things, like eating specific foods, exercising, creating a good habit and doing it daily and getting rid of a bad habit, drinking a certain amount of water daily etc. You are not allowed to have sugar or high fructose corn syrup unless it's your meal or day off(you get a meal and a day off each week). You must also lose 1% of your body weight each week or you don't get your bonus points for the week. The best part is you have a team and you play against other teams and we did it for 4 weeks. We were SUPER competitive to say the least. No one wanted to let their teammates down and no one wanted to have the other team beat them. The final prize was money and the losing teams had to throw the winning teams a party. My team ended up winning BARELY but we won YIPPEEE! 2 of us, myself included, continued playing the game with 2 new teams for another 4 weeks(I am on week 4 of it right now and honestly can't wait to take a break cause it's not easy!).

This is the first week in the game that I didn't make my weight. I had a feeling that was going to happen but I hate to let others down, especially my own teammates(at the end of the 4 weeks the team with highest score wins and like I said we are competitive!). I sat here this morning trying not to beat myself up about it. I was trying not to be negative about it and trying to ignore the negative self talk that some say I do too much of, and they are probably right. Then I got an email from someone I am doing "Game On" with, she's on an opposing team. The person who wrote this book is a writer on Grey's Anatomy, Krista Vernoff. She has a blog and Dawn, who sent me the email, had gone on the Game On website and read this blog entry. She sent it out to all of us today. I needed to read this today, it's a great reminder about how lucky I am to have all I have, mainly my health. Without my health I couldnt' do all the things I love to do! Here's the blog entry written by Krista Vernoff entitled "Dance". I hope everyone does a little dancing today :)

Dance

This morning, I put Ingrid Michaelson in my iPod and spent a full minute -- maybe even 2 -- dancing naked in the mirror.

I know. You think it is a) bizarre that I would do this and b) even more bizarre that I would admit it to a bunch of strangers on the Internet. But I did it, and I'm okay admitting it and I'll tell you why: yesterday I learned that my old friend Karen (also known as Kalena) has stopped her cancer treatments and gone on to hospice care.

Karen is 42.

Her daughter, Zaiden, is 5.

I blogged about Karen 2 and a half years ago when she was diagnosed with stage 4 breast cancer and given 6 months to live. I asked you all to send your money and your prayers and many of you did (thank you.) Karen has shown an extraordinary fighting spirit. More that that, she has shown an extraordinary willingness to try, every day, to have an accepting spirit, a rising-above spirit, a healing spirit. This has not been easy. Karen went to the doctor when she first felt the lump. When she was probably still Stage 1. She was dismissed; misdiagnosed. Then she went to a specialist and she was misdiagnosed again. By the time she was properly diagnosed, her cancer was so advanced that for the last two and half years she's been struggling to walk, struggling to breathe, struggling to lift her beautiful daughter. And still, she's fought, she's prayed, she's written, she's played, she's danced.

Normally, when I look in the mirror, my eyes go like a laser beam to the stretch marks, to the cellulite, to the 38 year old, less-than-perky breasts, to the new lines that deepen daily across my forehead; to the "flaws." But this morning, when I walked past the mirror, the light was coming in in such a way that all I saw was beauty. I paused. I put on music. "Keep Breathing." I danced.

The stretchmarks mark the 9 months I got to carry Coco in my belly, the 9 months I was lucky enough to get to grow this beautiful creature from scratch. The celullite reflects delicious meals I shared with friends and long hours spent sitting and writing at a job I love. The sagging breasts reflect the years of blissful, bond-full breastfeeding. The new lines reflect days spent laughing and crying and living (and a very healthy fear of Botox.)

I still have weight I want to lose and crap I have to do and grief I have to feel and there are moments when I feel defeated by all it. Absurd. Defeated by an extra ten pounds? By a fight with a friend? By a difficult divorce? Defeated? While my breasts are lump-free and my child is here with me, laughing and growing? Absurd.

Today, for this moment, I have perspective. Just one of many gifts that knowing Karen has given me.

I hope you will stop today and kiss your kids and give thanks for your health and theirs. I hope you will put on some music and look in the mirror and see the beauty. I hope that for just one minute, you'll dance. "

Happiest Place On Earth!!

Ok so this first pic of Chase isn't from the Happiest Place on Earth but I love it anyway so I had to post it!



Now onto my favs from our recent trip to Disney. Kids had a blast and were so good. I'm so lucky to have such happy kids!!