Driving to work today I had 8 million things running through my mind from what needs to get done for Christmas, who's coming to Christmas Eve dinner, to the list of things I need to get done at work, what kid needs to be where and when, what does the weekend look like for soccer, when are baseball tryouts,  I better not forget to send a certain email, when does basketball start, we won't make flag football this weekend, do I have any more non work meetings after work this week to I have a hair appointment, I need to stop by the dentist office, I need to make myself a few Drs appointments etc.  Eventually I just told myself, as I do often, Just.Keep.Going.  Just.Keep. Going.  My mind races and I hate it but it's always been this way.

The entire time I'm driving I'm half awake and am feeling like I'm getting sick(who has time for that!?) but I am listening to Christmas music because hello I LOVE Christmas.  I love the magic it brings.  Then a song came on and I flashed back to Monday night.   We were shopping for gifts for the kids.  Every kids store I went in I found myself stopping, staring at all the baby stuff, especially the baby girl stuff.  And it's then I realize, for like the 10,000th time in my life, that I am done having kids and it's still hard seeing all the baby girl stuff.  It's a HUGE trigger.  I've talked about it before but when Kendall was a baby, it was incredibly stressful.  Looking back I was too stressed out to enjoy her because I didn't know what her life would become.  I felt like all I did was take her to Drs appointments, therapy appointments and wait.  The waiting was filled with all the what if's.  What if she never walks, what if she never talks, what if she doesn't make it through surgery(ies), what if her health fails her, what if, what if, what if.  Those are some dark and hard what if's.  I freeze in that moment in the store seeing all the baby girl stuff regretting the fact that I didn't enjoy the short time I had with her as an infant.  I look back at pictures and am filled with more regret because she was one beautiful and sweet little baby girl and I, well I, was just too sad to realize it at the time.  She had all the cutest outfits and the perfect nursery and my heart aches even more for what the stress of all the what if's took away from me.  It striped me of newborn/new mom joy and bliss or whatever my idea of that was.

I want to go back, knowing what I know now, and replace all those what if's.  I want to tell them to shut the fuck up and let me enjoy my first and only baby girl.  I want that cloud of sadness that I had the first year + she was born to fade away so I could see her more, enjoy her more and not stress out.  That, however, was not my reality and I can't get those years back.  And I stand in the store staring at all the baby girl stuff frozen, just frozen.  

Eventually I force my mind to shut off and focus on what feels like the 800 other things that I need to get done in that moment.  I get out of the mall and on with my night.  I get through half the week and my friend posts an article on my wall and I read the following quote : "I don’t believe carrying heavy emotions is what defines weakness; I believe carrying on despite them is what defines strength.".

Then I start to think more.  I have carried some really heavy emotions and they have felt awful, really awful at times.  But, I've gotten through so many of them.  I don't feel strong daily by any means but I know I am so much stronger than I once was and it's because of all the emotions.  I recognize them, I talk about them, I move through them even if it means I still freeze at times.  

And I see Kendall in a totally different light now.  I am in awe of her and her strength and confidence. I am so proud of her.  Forget how strong I may or may not feel on any given day.  She's the strong one, she's showing me the way.  She's the one who has to brave the world being different, moving more slowly than the rest of the world, especially here in Silicon Valley.  She has been STRONG, she has been CONFIDENT, she carries joy in her heart and is full of love.  She doesn't stress about what she can and can't do.  She just loves.  She gives me strength.  Watching her grow up has been a privilege.  I may have huge regrets and sadness about not enjoying her short lived baby years but I sure as heck do enjoy her teenage years.  I have such a different perspective now, 14 years into raising her. Though there are still times that leave me frozen, the majority of the time just leaves me in awe of her, her sweet soul, smile and life.  I can't wait to see this Christmas and the next few years of life through her eyes and I'll continue to remind myself that she, she has made me strong.

Peace Out 8th Grade, I'm still smiling

On my way to work today I found myself smiling in my car because 5 days ago Kendall graduated from 8th grade.  She walked, ran actually, (Kendall speed) across the stage confidently, met the principal halfway, got her diploma and marched off so proudly.  3 kids from her class graduated and this was the first time, from my understanding, that her school had them walk.  I laid it out in her IEP how it could and should be done, as she's just as deserving as anyone else, and they listened and implemented what I suggested and it was perfect.  Literally PERFECT.  I think the 3 kids graduating from her special ed class got the loudest and most cheers. That alone gives me hope that our teens, even adults and maybe even the world(at least in our liberal bubble of the Bay Area) is headed in the right direction.

As I drove to work, I thought of 13 years of IFSP's or IEP's that I have sat through and battled for what she needs.  I remembered learning about IFSP's then IEP's as she entered school. I remember talking to a lot of people with a lot of opinions, trying to learn and understand how they work or should work.  I remember getting great advice and having a lot of support.  I also remember feeling like I was doing this alone as there wasn't enough advice or support out there because everything with Kendall was always just "we'll wait and see".  That's a hard way to live.  I'd rather know the worst and deal with it and heal then wait and see and not know what might happen.  I thought about every single surgery she has had, all the hospital stays, how every February she gets pneumonia and how stressful that is, and how for the past 4 or 5 years I've managed to keep her out of the hospital by the grit of my teeth.  I thought about everything that was told to me the day she was born and even months after.  All the things she may not do.  Would she even live a long life?  I thought of how I spent, what felt like years, so sad over who she should have and could have been if she was just born a "typical" child.   I remembered bursting into tears after a surgery when everything went wrong and she was at risk and by at risk they meant for dying.  I remembered how I had never cried during an IEP until 6th grade, that one was so sad for me.  I was so tired of hearing about how she didn't meet her goals or pass this or that test and just losing it(in front of a ton of strangers I might add).  There has been a lot of sad over the years, probably more than most have experienced or could even understand.  However, there I was smiling in my car.

Smiling because from 7th grade til now, in just 2 short years, Kendall has blossomed.  She started to talk and literally never stops.  You may not understand it all but lord she talks and talks and talks.  She has become her brothers, who are majorly into sports, biggest cheerleader.  Not only does she cheer for them though, she cheers for their entire team.  Literally, she remembers each players name and cheers for them when they are up to bat or playing soccer or basketball etc.  She cheers loudly, from her heart.  If Brady goes down in soccer or baseball she bursts into tears immediately because she cares THAT MUCH.  Imagine what it would look like if everyone cared that much!?  She then gets herself together and asks "what happened?" and wants to know if everyone is ok.  She's opinionated about clothes, about where we go and what we are doing, and where she sleeps(only wants to sleep in her own bed at home with Sadie, her saint of a dog).  She talks about her friends at school, her amazing amazing teacher who has helped her become this confident teenager over the past 2 years, her aides at school who are also saints, she talks about food......OMG does she love food.  Her heart is filled with love for her family and friends.  Filled with love for complete strangers and even some boys.  Love pours out of her and I sit here smiling because 13 years ago, I couldn't picture her graduating 8th grade and me being thrilled about it.  But I'm more than thrilled.  I don't even have the words to say how I feel to be honest.  It was by far one of the best days of my life watching her walk across that stage knowing how far she has come in 13 years.  She's dealt with far more crap in life than anyone else I know and she's still filled with happiness and joy 90(ish) % of the time.  

I'll never stop saying this, she is by far the best teacher in my life.  Without her, I know I wouldn't be who or where I am today.  I'm just better in so many ways due to just being her mom.  Sometimes I think I have been given this little gift/insight to certain parts of life that others don't have because of Kendall.  I truly enjoy the small things.  Without her I think I would have overlooked them so easily.  I would have taken so much for granted like the boys abilities in sports or academics or whatever it may be.  She made me a far better parent to them.  I'm far from perfect, don't get me wrong, but I am so much better with her in my life.  It's been such a ride raising her with emotions ranging all over the place.  Yet I'm still smiling all because of one, what seems so simple, walk across a stage to get her 8th grade diploma.  Kendall, I can't wait to see what else you have in store for me.  Thank you for choosing me to be your mom.   I am so so so so proud of you. 

3 nights.

The last 3 nights I've laid with you as you went to sleep.  I haven't had to do that in a long time but it brought back a flash of memories.  Your glider lives at a friends house now.  Every now and then I go over to their house and it's a chair I still want to sit in after 13 years.  I could rock in it forever, it's so comforting.  Rocking you as a infant, baby, toddler and even years beyond was the one thing I knew I was doing right.  Tonight as I lay in your bedroom, I remember how it was once our office in this house.  That led me to remembering your nursery at our old condo, the pink bottom half with moulding with the white top half and a net of stuffed animals hanging in the corner above the glider.  I remember trying to perfectly place all the stuffed animals in the darn net without them falling out and what a pain that was.  I remember Shannon's white crib that we borrowed and how it fit so perfectly in the nursery.  I remember the hand painted sky with clouds on your ceiling that Jackie and I spent a long time perfecting.  And how could I forget the perfect princess quilt hung with 3 big white stars on your nursery wall.  The closet doors were taken out and replaced with light weight white fabric hanging so you could see your perfectly cute baby girl clothing all lined up and baby shoes, so many baby shoes, all the baby shoes.

I rocked in the glider in that room for months before you were born.  I imagined what you would be like, what being a mom would be like.  I felt you kick and move and I imagined more and read so many books.  I LOVED figuring out what your name would be.  Kylie, yes Kylie it was for many many months and then surprise we made a last minute change to Kendall, Kendall Elizabeth.  We liked that the first name wasn't that common and that your middle name was the same as mine and my grandmothers.  That surprise last minute change of your name should have warned me about all the surprises that were to come with you once you were born.  I was so ready to meet you but you didn't want to come out early at all.  You were 8 days late.  8 LONG LONG days late.  And then tomorrow night at this time I was in the hospital being induced.  I didn't know what to expect, I was just excited and then the first contraction came.  I didn't realize it was a contraction I just thought it was a bad cramp then they kept coming.  Dan was the one who looked at me and said "OH MY GOD, those aren't cramps they are contractions."  I panicked.  The pain came so fast.  I finally got all settled with meds.  Then a few hours later you were born.  And BAM the room turned to silence.  Something wasn't right I could sense it, I knew it.  No one could say anything, they all tried to reassure me but  I KNEW.   I guess that was my first mother's instinct.  Something wasn't right.  And then everyone but my doctor and I left the room.  I sat stunned in silence.  

Tonight in a matter of 30 minutes while I laid with you so many memories came flooding back.  You sleep with the same bunny and in the same position as you did when you were a baby.  You stroke the bunny in a calming way that soothes you still to this day.  I hope my presence still soothes you as well.  You my baby girl, my first born, the one I've learned the best lessons in life from.  I hope I can forever soothe and help you.  It's funny how when all goes silent you can really remember and feel all that has happened in what feels like the blink of an eye but in reality it's been almost 13 years.  The hardest most rewarding 13 years of my life.  They are because of you Miss K.  I'd never know all I know now if it weren't for you.  Thank you for choosing me to be your mama.  God or whoever it was up there had some real faith in me because I would have never thought I could do it or do it well.  However, here I am and here you are thriving, makes me feel like I've done one big thing right in life.  Sleep tight baby girl, for you are almost a teenager. 

Dear Kendall

Dear Kendall,

Today I watched a 13 year old and her mom.  She was a few inches shorter than her mom, they spent time chatting and walking.   I thought about if she looked more like her mom or dad.  I watched their interactions.  For a few seconds I had what if's running through my mind.  What if you were not born with a rare chromosome disorder, how tall would you be,  what would you look like, what would you be experiencing in 8th grade that you aren't right now?  What if, what if, what if.  Those thoughts could tear me apart if I let them and they have in the past.  However, rather than in years past where I would get stuck on the what if's, I quickly changed my thoughts.  I thought about how far you've come,  how you talk after years of not talking and it's understandable, and I thought  about how great your laugh is.  How you still throw one hand over your face when you laugh really hard.  I look at all the amazing lessons you have taught our family and friends in life.  Look at how you see the world, full of love and kindness, never hate.  What if you were a "typical" kid?  What if?  Who would your brothers be if you were "typical"?  Would they understand compassion and have the empathy that they have now?  Would they take the time that they do to help others?  Would they know how to help their sister when she needs it?  Would I have the empathy and understanding of others that I have because of having you in my life?  Would I be able to look at the world through your eyes if I had a "typical" daughter?  Would I see the world with the same love that you do if it weren't for you?  No.  No way.

I am smarter because of you.  Wiser because of you.  More accepting, patient(most of the time), and caring because of you.  I've lived a lifetime in almost 13 short years because of you.  Because of you I'm resilient.  I get down but I don't stay down, not for long.  I come back.  Yep, I keep coming back.    I come back better and stronger because of you and I will continue to do so.  You inspire me.  You make me speak my mind.  You have forced me to advocate, not just for you but for myself and my life.  You have taught me to talk about my feelings more, to express myself, to share what it's like to raise you.  You are one of the best lessons I've ever had in life and I think what a shame others don't get to learn the lessons that you have taught me.  You made me a mama but the non "typical" you made me a better mama then I ever would have been if I didn't have you.  I saw another girl and mom walking today, I compared lives for a moment but I didn't get stuck in that moment.  Rather, I was able to think about all the moments we have had because of you that in turn have made us all better and stronger.  I don't know anything different and after almost 13 years I can say I don't want to know anything different.  Thank you for being one of the greatest teachers in my life.  You are small but mighty and very very loved.  I sure hope you know that.   

Love,
Mom

What made me a mom? 

Giving birth to a baby girl at age 29 technically made me a mom right away but I think over time I became a mom.  I think every mom "becomes" differently.   Some may feel it the minute they get a positive pregnancy test, some may feel it the moment their baby is born and laid on their chest or put in their arms and others, like me, may take time, more time to "become" a mom.  I'll never in my entire life forget the moment Kendall was born.  The only words I heard around 2:14am early Monday morning were "you have a really small baby" and then the room went DEAD silent, everyone cleared out and went to the NICU, everyone but my OBGYN and me. Thinking about it to this day gives me the chills(and not the good chills).

I didn't get to hold her right away, the first diaper I changed of hers were with my hands through an incubator while I was shaking and sobbing, I didn't bond with her right away, I think mostly out of pure fear.   That fear that keeps you protected and safe in case something bad happens and trust me when I say most everyone thought and feared the worst.  When I finally held her she had an IV in her head and tubes, there were so many tubes, they were everywhere.  I didn't know what I was doing.  In fact, my OBGYN thought I was so in shock that he had to talk me into going to see her in the NICU.  Not every mother just becomes. 

I kept holding her, feeding her, changing her, and holding her some more feeling so unnatural and so NOT at ease.  I didn't feel like a mom.  I felt scared and in shock.  But I held her, fed her, changed her and held her some more.  Pictures were taken, I smiled but I was so sad and scared.  I never expected to have a child with special needs.  I didn't know how to be a mom let alone one to a child like Kendall.  I held her, fed her, changed her and held her some more.   Dan did the same, he was much better at it.  It came naturally to him.  On day 2 I had to leave the hospital while Kendall had to stay.  I went home with this feeling of just no longer being pregnant but I didn't feel like a mom.  I stayed at the hospital as much as I could when I was released, holding her, feeding her, changing her and holding her some more.  Each day a baby step forward and on day 6 she was allowed to come home.  I still didn't feel like a mom.  I felt like a Dr/Therapist in training and slowly became my own version of that with Kendall by my side but still not feeling like a mom and definitely not a good mom.  The first year, day in and day out, I held her, fed her, changed her, and held her some more while attending hundreds of Drs and therapy appointments.  With every feeding, every changing, every cuddle it slowly became more natural. 

My entire world had changed and very differently than that of my other friends with newborns.  Hold her, feed her, change her and hold her some more.   2 months in she smiled, 4 months in she sat up, 2.5 years in and she finally walked.  Many surgeries and therapies later over the years and then one day things shifted....I now knew I was a mom, a mom different than any other mom I knew but also a mom who was very similar to every other mom I knew.  I felt like a mom, I was confident in being a mom and I knew I would do anything in the world for Miss K.  It wasn't what I expected but overtime I became and Kendall forced me to become and changed me to the core.  I was still far from the perfect mom(there's no such thing as a perfect mom or person by the way) but I changed for the better because of her.  I felt confident in caring for her and giving her what she needed.  I stopped worrying about what her future life would look like and most importantly (and this happened really early on) I threw out all the parenting books and let my gut figure it out.  AND it has never proven me wrong with any of my kids to this day. 

I write this because with Mother's Day around the corner some may be ashamed to admit they didn't feel like they became a mom right when their baby was put in their arms but it doesn't mean you won't become a fantastic one in time, and as long as you become in your own time frame and that baby is loved, you are doing a fantastic job.  Don't ever forget it.  It's the hardest job on earth, being a parent, so give yourself some slack and know you are just doing the best you can.  Becoming a mom is different for everyone.  When you feel it, it's pretty darn amazing.

Gaining Independence!!

I always do my best to be honest when I write about my experiences when it comes to raising Kendall.  That can include all sorts of emotions from very low lows, sadness and frustration to happiness, joy and being in complete awe of her and her accomplishments.  I try to keep it real in hopes that all can feel what it's like to raise a child with special needs through my writing.  It's been quite the ride if you've known Kendall since she was born or even if you've followed some of the things I've written here about her.  She turned 12 on September 22 and is now in 7th grade.  Sometimes I look at her and think why does it feel like it takes so long for her to really understand things and other times, like this past week, I look at her and see just how much she's grown and how much independence she has gained.  I mean my biggest goal for her in life is to become as independent, happy and confident as possible.  It's going to look different than that of a typical kid but I don't care how it looks or how she gets there, I just want to see it happen and I know it will take longer.  I'm ok with that.  And from the start, I've always said the best part about Kendall is her heart and how caring and loving she is.  That's her best quality in my opinion.

Here are a few recent highlights/brags because she deserves recognition just like the rest of us do.  Earlier this week we got a letter from her middle school saying she had been selected for an award by her teacher for modeling her schools "Bronco" attitude, specifically modeling "Good judgement".  "Students with good judgement show concern for fairness and the welfare involved, make careful decisions, possess freedom from preconceptions and biases".  If you ask me, that's pretty cool, especially that last part.  Those things are not easy to teach to a typical 7th grader, specifically one with special needs, yet here she is getting this award this week.  It's a moment worth celebrating for sure!  

As Halloween approached earlier this week she was quite excited.  She was a princess pirate and LOVES to get dressed up.

This year we went trick or treating with a big pack of boys from the neighborhood and a couple of Brady's friends.  She use to tire quickly walking around and we use to have to walk with her to each door encouraging her to say or even sign trick or treat and use her thank you's.  This year she didn't wear out, she kept up with the boys and confidently went to each door as we stood back, really far back actually.  She said Trick or Treat clearly and confidently and used her thank you's every time.   As I stood back from afar all I could think of was the first probably 5+ years of life when all I could do was wonder when/if/what she would accomplish in life and I remember so clearly how stressful that was.  And here she was now not missing a beat, doing this all on her own with a little help from her amazing brothers and their friends.  I know she's teaching her brothers a lot about life, including empathy and compassion and I sure hope their friends are learning from her as well.  I think they are because I witnessed it last night and it warms my heart.  It may not sound like much to people with typical 12 year old kids but last night was a big step for her and her independence....huge actually.  Amazing and I was so proud of her. 

Finally tonight as Dan was cooking dinner, I look over and she's setting the table.  I'm not sure if he asked her to or not but she's happily doing it and doing it correctly.  Placemats were set, then forks with napkins, she asked me if we needed spoons(we didn't), she put cups out and filled them with water without spilling.  Then laid the plates out(don't judge our paper plates ;).  And again, I sat there and thought about all the things people said she may never do.  Here she is proving them wrong.  Being independent and happily helping us out.  Of course I had to take pics and document it:

Finally, and I wish I had pics of this or video of it but she has some pretty active brothers in all kinds of sports throughout the year.  She loves watching them play and this season in soccer when Chase scored one of his goals she jumped up and ran to me yelling Go "BOO BOO BEAR"(his nickname) she was so excited for him and immediately asked me if she could go hug him.  When Chase tested for his purple belt and 3.5 hours later passed she went up to him and gave him the biggest hug and kiss on the cheek that I've ever seen, it was completely spontaneous and so very sweet.  She cheers for Brady in soccer when he's playing goalie or on the field just as much.  She's not perfect, no one is, but this is one strong, amazing and loving girl!  I'm so proud and lucky to be her mama.  I'm thankful for her and I'm loving watching her grow into a more independent young woman, even if day to day it can feel like such baby steps until weeks like this one where it all starts to come together.  Amazing, just completely amazing.  I can't wait to watch her continue to grow and amaze everyone out there as much as she amazes me.  Parenting a child with special needs is not for the faint of heart but as I've said time after time, she's teaching me more in life than anyone else ever has and for that I'm very grateful!  She's my hero in so many ways, so much stronger than I'll ever be.

https://www.youtube.com/watch?v=WEPB76o2KXw

We could hide away in daylight
We go undercover, wait out the sun
Got a secret side in plain sight
Where the streets are empty, that's where we run
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
Anybody's got the power
They don't see it cause they don't understand
Spin around and round for hours
You and me, we got the world in our hands
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
We could be heroes
We could be heroes
Me and you
We could be
All we're looking for is love and a little light
Love and a little light
(We could be)
All we're looking for is love and a little light
Love and a little light
We could be heroes
We could be heroes
Me and you
We could be



     

The Dark(er) Side Of Me

Sometimes in life my world becomes gray and NOTHING seems to go right.  You name it and it's likely wrong, off or not fair.  Even the littlest things seem to bother me.  I think things like why is this happening to me and not anyone else, when will it all get better etc.  Usually this happens to me around Kendall's IEP or her birthday, there are often triggers.  Even though I know there are triggers   I still almost NEVER see it coming.  It sort of feels like the joy is sucked right out of me or I've fallen and I can't get up.  Or if I do get up, it's like the weight of 10,000 pounds is attached to my feet while I'm trying to get up.   It feels like I just can't breathe, like life is way way way too hard, like things can't get worse.  And when I'm surrounded by happy people at this time, I can hardly sit and listen to their happiness which in turn makes me feel like a SHITTY friend.   My anxiety sky rockets and it's all I can do to get through each hour of each day.  It's anxiety combined with some SITUATIONAL depression.  Different things trigger it and usually it lasts a few days or weeks but this time it lasted months.  When this happens, I have a hard time telling anyone about it which is STUPID because it's really when I need the most support.   So now I'm writing about it because if you know me at all you know I write when I'm upset.  I try to be honest, raw and not hide how I feel in all my interactions but this, THIS is hard to talk about while it's happening.  In the end, I know I ALWAYS get up.  There's no not getting up, not with 3 kids, not with a child with special needs.  I won't let that happen.  I'm strong enough, even in my weakest moments, to know that at the very least I can fake it until I make it, during that time it's hard to breath but I keep on keeping on.  

At some point when all of this is going on people notice.  Thankfully, my friends and family notice.  I mean I'm usually social and overall pretty happy the majority of the time.  So my friends and family do their best to help me feel better for which I'm eternally grateful.  Sometimes it works and is just what I need but not this time.  This time it didn't help enough and I just kept hearing myself tell my brain the same story about how awful I was feeling and how hard my life was.  This is when I know/knew it's time to get back to therapy.  I've been in and out of therapy since I was in my 20's and it's saved me.  Today, she called BS on some things I said and also talked to me about how to stop obsessive negative thoughts or obsessive unhealthy thoughts.  In 50 minutes she made me realize that it's not all that bad, that there is a lot of good and the bad parts can be worked on.  Nothing is ever black, white or permanent.  I feel 100 times better than I did at 2pm today and I am hopeful that my grayness continues to go away little by little, bit by bit.  I know it will, it always does and then I grow and feel stronger and am able to talk about it.  Maybe the fact that I'm writing about it already means it's getting better because I'm actually admitting it out loud here and now.  Life is hard and challenging on so many different levels(marriage, kids, work whatever).  I don't want to be the person that pretends it's not.  I want to be the person that deals with the crap life brings and becomes stronger for it so here I sit and write.  Today I finally feel a little bit stronger(I definitely tend to reference a lot of country songs on this blog ;)  ) and a lot more grateful for all the things I have.  

If you feel this way, get help.  Don't feel any shame in seeing a good therapist.  Don't be afraid to really work on yourself.  It's scary, you'll hate hearing the therapist call you out on your own shit because she's right and it's painful to hear/recognize but it's the best gift I've given myself.  I'm still a big work in progress at the ripe ol' age of 41.  Here's to a healthy self, to a very healthy me all around...mentally and physically.  Peace out.

 

The IEP(and how it feels for me personally)

Every year I rant on Facebook about how much I dread Kendall's IEP.  Often, in response, some people will tell me to be thankful for them or thankful for the team of people that Kendall has behind her and her IEP.  So, before I start this I want to assure everyone that I am thankful.  It took months and months for the school to hire a teacher this year but in the end they hired a great one.  One that understands IEP's from a teachers perspective and from a parents perspective because she has a child with an IEP.  I am grateful for her OT, Speech teacher, adaptive PE teacher(he's so great), the school psychologist(she was the only one who got up to get me kleenex when the tears started to fall) and everyone else that helps Kendall on a daily basis.  I am grateful for IEP's.  I just wish they could be administered differently so that they really get a COMPLETE picture of the child.  Ok, now that's out of the way.

Picture sitting at a table with all of the following people: Regular Ed teacher, resource specialist teacher, special ed teacher, principal, OT, speech, deaf and hard of hearing teacher, adaptive PE teacher and the kicker..... the school psychologist(pysc just come once every 3 years and this year she was there).  All sitting with their laptops and 25-30+ page long IEP's.  Each individual take turns going over the tests they have done with Kendall.  Each test she takes then tells us where she is equivalent to a "typical" child and what level she is functioning at.  The ENTIRE YEARS work that they have done with her is summed up based off different tests they do with her just to complete the IEP.  So, for example, she could say throw a ball 7ft into a target 10 times in a row but if on testing day(for the IEP) she only makes it 1/10 times that is what goes in the IEP and then the report comes back "very low functioning" age level equivalent of say a 3.5 year old or whatever.  Same with site word tests, math tests, things related to speech, phonetics, comprehension, language, fine motor skills, can she cut a circle? A square? Can she write a K?  Can she recognize upper case and lower case letters?  Does she recognize basic signs in life like stop signs, danger signs?  All of that plus more, so much more.  Then the school psychologist chimes in about observing her and her findings and it goes on and on and on.  All of this is happening while I(and Dan) sit there listening and staring at the papers that just constantly say over and over how far behind she is but they just keep going over test after test.  It's like a hard punch to the gut every single time they give the results.  Look, I've been told a time or two I'm pretty darn strong both mentally and physically and I could likely take some punches but this is NON STOP for almost 2 hours.  And the entire time I am thinking, these tests do NOT define Kendall.  Why is this all based on stupid tests?  Then some of the teachers start to admit this as well but I feel like they are saying it mainly because they see me start to cry(which normally I don't do in IEP's but today it just happened).  Without my tears, I think only a few of them would have remembered that they are talking about my child and this IEP process is PERSONAL not robotic.  Tests do NOT define someone. 

Then once they tell us the results of all these tests they move into setting goals for her for next year and give their reasoning behind the goals.  We either agree or not to these goals.  This is the easy part and goes by rather quickly.  It's much less painful than the first part.  Then it's pretty much over.   

For a short while some do start to talk about and recognize Kendall's big heart, how she's always happy and happy to see them and always willing to "do the work".  Some say she's even starting to get more competitive in things they do(I'll thank her competitive brothers for that).  Now these, these are the parts that truly matter to me.  Her heart, her smile, how kind she is, how friendly she is....why can't they measure that?  For Kendall, those are her strengths and they aren't tied into all these tests that the entire IEP is based upon.  Academics are never going to be where she excels but there are so many other areas that are more important for her to excel at and I just wish they could focus more on them.  I could care less if I ever hear another one of her academic tests results again in my life.  I do understand the importance of academics but not for Kendall.  For her, it's all about practical life skills from here on out.  Let's focus on realistic and achievable goals for her so that she can be as independent and confident as possible as she continues to grow up.  Let's also recognize her strengths because in my mind she's got what way too many "typical" kids are missing these days...that big ol' happy loving heart.  THE END.

Random Christmas Kindness

I posted this on Facebook not too long ago but I wanted to leave it here as well so I remember how kind people can really be :)

At Target with Kendall and an older man is in line behind us. He says Hi to Kendall she says Hi back and smiles. He asks "How are you?". She replies "Good". He then tells her Merry Christmas and she says it right back. Clear as day. I can't tell you how many years she has practiced this exact type of conversation in class with her teachers/classmates. Everything that came out of her mouth was so clear and so appropriate to this little conversation. I'm sliding my red card through and he looks at her and says "do you have a piggy bank?". She answers "yes". He then proceeds to pull $2 from his wallet and I must have looked shocked because he asks me if it's ok to give it to her so she can put it in her piggy bank. I said yes and thanked him about a gazillion times and we left. If he only knew Kendall's whole story and what an amazing act of kindness towards her this was. Sometimes I feel like the Grinch with a small heart but as I got in the car ............."And what happened then? Well, in Whoville they say that the Grinch's small heart grew THREE sizes that day. And then the true meaning of Christmas came through, and the Grinch found the strength of ten Grinches plus two.". ‪#‎RandomChristmaskindessrocks‬

Eleven

It happened, Kendall turned 11.  I love that she loves her birthday and she totally deserves to be celebrated in a big way every.single.year!  She's come so very far and is loved by so many people.  I'm so lucky to have her in my life.  That being said her birthdays are hard on me.  They always have been and I feel extremely guilty about it.  This birthday has been especially hard and I never saw it coming(actually I rarely ever see it coming).  Here's what the past 5 days looked like, it's a little example as to why it can be hard.  A little side note, I actually have a hard time sharing all of this.  It makes me feel completely vulnerable, whether 1 person reads this(being Dan) or 50 people read it....either way I feel the same amount of vulnerability.  At the same time, I share it in hopes that someone, some day may be able to relate or maybe it can help someone who is just starting out on a similar journey with their own child with special needs.  

4 days before her birthday, I was celebrating our wedding anniversary at a Martina McBride concert.  As she sang "In My Daughters Eyes" with just the piano, I found myself crying.  Dan likes to say sobbing but that just wasn't true ;).  Even he said the song gave him goosebumps.  If you've never heard the song before you can hear it here: http://www.youtube.com/watch?v=eLS0Y40WwlA.  If you listen to it you can probably see why it could make parents of a girl(s) a bit emotional.    I'm just glad she didn't sing God's Will because that would have made me a complete sobbing mess.  That can be found here: http://www.youtube.com/watch?v=YCRrrP0EhPc.  I left the concert happy but the song was weighing on my mind because it's always been my song about Kendall ever since she was little. 

The next day which was Friday, I was driving to bootcamp and I found myself doing something I rarely do anymore.....thinking about what kids Kendall's age can do and that led me to thinking about what Kendall should or could be doing at age 11.  It's a bad place for my mind to be.  It was like all these thoughts just snuck up on me and now I was sitting there feeling frozen.  It felt like she was just born and I am finding out the news about her(which was all very unexpected), wondering what is going to become of her life and mine.  I don't even have the words to describe how hard the first 4 years of her life were, filled with lots of surgeries and therapy and me trying to take it all in.  Trying to come to terms with letting go of a lot of dreams that I had for her was and still can be one of the most painful things I've ever done in my life.  It's a huge loss, like Welcome To Holland states " and the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss." 

While at bootcamp, I was just trying to get through the class.  In between sets of things we were running around the building and I couldn't breathe.  I mean I had to stop and walk slowly and convince myself not to gasp for air while holding tears back.  It felt like I was in the midst of a panic attack.  That run is easy for me after all these years(the class is not) but one time around that church is 1/10 of a mile and I must have done it HUNDREDS of times but I just couldn't get it together very well. My friend noticed right away something was wrong when we were warming up but my response was "nothing" because if I would have let it all out at that moment the ugly cry would have started and I didn't want to interrupt the class.   So I trudged through just trying to breathe and when I realize it's not working I tell my friend(and hold it together a little bit) why I'm sad and then I start to feel a little bit of relief and make it through class WHEW. 

That same afternoon we met with Kendall's case worker from the Regional Center.  We currently receive respite services from them but they need to update their info every so often.  After about an hour of meeting with the case worker she told us that Kendall now qualifies for MediCal under a special provision.  I just heard the words MediCal and thought great she'll have secondary insurance now.  She then went on to explain that under this provision, once she has her MediCal card, we are eligible to apply for something called IHSS(In home support services).  Basically, someone comes out to evaluate Kendall and if we qualify we would be eligible to have someone come into our house and do things like help clean, meal prep, laundry, help watch Kendall to keep her safe, take her to drs appts and other things as well.  The kicker of this is that if we qualify, Dan or I(or both depending on how many hours we qualify for) would get paid to take care of Kendall.  It's not a lot of money but it would be very beneficial to our family and it's all things we've already been doing for 11 years.  I wanted to cry happy tears because I'm so thankful that there is more support out there for families like ours.  I was thankful for our new case manager for telling us about all this.  I don't know why all of the sudden she qualifies for MediCal but I'm glad she does.  I hate that finding out any of this info took 11 years and is really difficult to do on your own but happy it exists regardless.  

So, we celebrate her all weekend long because why wouldn't we?  She's been such an amazing gift and 11 is a big milestone.  Last night after she goes to bed I grab the MediCal paperwork and realize that the provision she qualifies under is called Institutional Deeming.  Immediately my heart sank just based off the wording of the provision.  What does it mean?  From what I have read it means to provide health care clients the ability to remain at home or in the community rather than be in an institutionalized setting. Let that sink in for a minute.  My heart breaks some more.  One would NEVER want their kids to qualify for MediCal under this provision.  While I'm grateful it exists my entire self is just sad.    As I sat at karate tonight, I told a friend a little bit about how I've been feeling and she says "it's ok to just cry, be sad, it is sad" and those were such comforting words.  No "it could be worse", no "it will be ok"....just seriously the most peaceful and comforting words ever.  Thank you Kate, I'm going to do just that for now.   

Spread The Word To End The Word

If you've never seen this video you should watch it now then watch it with your kids.  Replace "Olivia" with Kendall.  You get the picture.  Thank you :)

https://www.youtube.com/watch?v=CoqaNG0Ozqc

 Unseen

I have been on both sides of the SAHM and working mom fence as a parent.  I actually don't find one better than the other, they both worked great for me depending on the needs of my family at that time.  What I do find interesting is the feelings I experienced in each role.  I went back to work when Chase was just 9 months old.  It was very part time, just 10 hours a week for about 6 months then 15 hours a week.  That worked, the balance felt great and I was a happy mom which meant our home was happy too.  As Chase got older, I upped my hours more, eventually working 32 hours a week which really was more like 45+ hours a week when all was said and done.  That felt horrible.  I felt like I was completely stretched thin and nothing could have my full undivided attention.   That was definitely NOT working for me no matter how hard I tried.  Then I realized Chase had a year left before going to Kindergarten and I completely freaked out about how fast time was really flying.  I wanted more time with him before Kinder and more time home with the kids and Dan.  So, as most know, I quit my job and am now home full time. 

I've been home for about 9 months or so now and it's been mostly really good.  Our house is less stressed, we eat more home cooked meals together, I can work in the class as needed and don't feel guilty if I or one of my kids get sick.  I get to see a lot of my kids and I'm thankful because I can't get this time back.  Then a few weeks ago I had a moment.  I freaked out at Dan over something ridiculous, so ridiculous that I can't even remember what it was about.  Then 30 minutes later these words came out of my mouth.  "I just feel unseen".  I didn't mean by him.  He's great at thanking me for all I do, so let me be clear when I say it's not him making me feel this way.  It's bigger than that.  It was the first time as a mom I really felt like no one really gives a crap in the universe about the work I am putting in.  Moms who stay home don't always get a lot of recognition.  We get stuck in the routine of it all.  The routine is day in and day out, very cyclical and it can drive you mad at times(as it did me that night) but this was nothing new to me so why was I freaking out so much?  I then went on to think I was a bit crazy so I asked a lot of mom friends that no longer work if they have experienced this and every.single.one said yes.  I mean one big unanimous YES!!  I was shocked, not that everyone I talked to felt like this, but mostly that no one had ever really talked about it before to one another.  

So what is it exactly that makes one feel unseen as a mom?  Is it just the routine of it all?  Is it my age(nearing 40)?  Is it that the universe seems to place more value on one that works full time and makes lots of money?  I guess I just don't really know the answer, at least for me in particular.  I'm really lucky and mostly really happy.  Dan appreciates me, the kids still seem to like me, there isn't really a way to give me a financial raise so then how do we conquer this feeling so many moms have of being unseen? 

Dance Class

Many know I found a dance class for kids with special needs and yesterday was Kendall's first class.  First off, the class, teacher and other students were wonderful and friendly.  Kendall really liked the class a lot, I think mostly because the music was good and there were props(who doesn't love props??!!)  She got to spend most of the class in a princess dress carrying a fancy fan.  It was quite cute and the best part was that no one cares what she can or can't do in the class.  There is no pressure which is great.  However, it was a mixed bag of emotions for me.  It is COMPLETELY heart breaking to watch your child not be able to do so many of the things that others kids can do, even in this dance class.  It's even more heart breaking that I can't fix it.  So it makes me really sad.   Parenting Kendall is by far the hardest thing I have ever done in my life, it can be really hard on the heart.  It's also the most wonderful thing I've ever done because it's taught me so much and because she is so amazing.  Most importantly, there is so much she can do and I would say her "free style" dance is just the best ever.  It takes the sadness away because you can't be sad watching it.  She's so happy that it just projects on to me(and Dan too).  So right when I was battling with this pit in my stomach during the class, this happened and all was right in my little world again...

Because of that, we'll keep going back and she'll learn and grow as will I.  Our journey in life together will continue on as always.  She'll make me a stronger, better mom because clearly she knows how to enjoy life, a little lesson everyone can learn from her!


Finally,  a little side note.  Chasey turned 5 this past Sunday.  It was his golden birthday.  I can't believe that he is 5.  He's pretty great and he even asked me yesterday "Mommy, was Kendall able to do all the dance moves?".  I said "no she wasn't but she had a good time anyway."  His response, "with practice she'll get better, right mommy?".  That boy loves his sister.  They are really close.  He then told me he'd like to do dance class with Kendall.  So sweet!  Anyway, a lot of people have seen the video I made for his birthday but I'm putting it here as well:  

https://vimeo.com/81291436

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!