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.