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