Once every few months I can't get to sleep at night.  It's as if once the house is settled and quiet my mind just turns on and the thoughts/worries/concerns kick in and I can't shut my mind off.  In all reality, these worries are always in the back of my mind.  I could be thinking about 1 or all of them at any given time but usually they can be kept at bay.  Not last night though.  I believe all parents share a lot of these concerns but as Kendall's parent I definitely have some extra worry(or at least what I consider extra).  So, I thought I'd share them because surely I am not the only parent out there with concerns like these and I KNOW other parents of kids with special needs have these same worries.  Some of my concerns are minor and may seem vein in a way and others are huge. I realize some of them have pretty simple answers and I just need to investigate what those answers are.  I also realize that some have no answers and are more of the "wait and see" type. Those are the worries that are the hardest ones to deal with.  I'd much rather have an answer or be in the know than not know anything.  However, there aren't always answers when it comes to raising a child with special needs.  Especially with a child as unique(and awesome) as Kendall.   Alright, here's my top 25 list of concerns:
 
1) What happens when she turns 18?

2) What medical insurance will work for her when she's off ours?

3) What happens to her(and the boys) if something happened to Dan and I?

4) Will she live with us forever?

5) If something happens to Dan and I(when we are at least 100 years old) will one or both of the boys take care of her and let her live with them if need be?  Is that expectation too much of a burden to put on them?

6) How are we going to handle puberty with her?

7) Next year in middle school, if she has a male teacher, how do they handle puberty?

8) If she gets lost one day in life, will people understand her when she says what her name is?  I need to order a bracelet with her info on it(easy answer for this one).

9) How will she get along in life when she can hardly read and write?

10) Are kids going to laugh at her today or give her weird looks?  

11) When strangers come up to her and ask her questions and she answers and is hard to understand what type of reaction are they going to have?  Good?  Bad? Indifferent?  How will she/I react to that?

12) Are kids going to treat her just like any other person out there?  Are adults?

13) Is social security going to be enough for her to live on once she turns 18?  I know the answer is no but how much is enough?

14) Am I screwing up our family' s financial future by not working?  I know our family is better off for the time being with me home.  It's calmer, it's more balanced but the financial concern is always there.

15) Will she need more surgeries?  I already put off Drs appointments that are due because she sobs the entire way to see them and has horrible anxiety when it comes to Drs.

16) I need to set up a special needs trust.  I need to set up a living trust.

17) What will Kendall do if she can't/doesn't go to college? 

18) Will I be caring for her 24/7 when she is out of high school?

19) What programs are out there for kids with special needs that don't go to college?

20) Will she be independent enough to have a job of some sort when she's older?

21) Will she stay healthy?

22) Will there be more hospital visits/stays?  What will they be for?

23) How do the boys feel about Kendall?  Will they feel comfy having their friends over as they get older knowing they have a sister that is "different"?  How will those friends react to her? 

24) Will she ever be bathe herself or will someone always have to help her?

25) Am I doing enough for her?  Should I be doing more?

The list could really go on and on.  I'm pretty protective of Kendall and the above worries are just some of the reasons why.  I just wish I had all the answers.  Not knowing can be a horrible feeling at times.  What I do know is this, Kendall is one happy girl and she goes through life with a pretty great attitude and for that reason alone I'm really lucky that she is my daughter. 

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.