Thursday, April 7, 2011


I know, I know…..I don’t update often enough.  Honestly, I don’t feel our everyday life is update worthy.  We have gotten into a pretty good groove and our everyday details seem too mundane to bore you all with.  Although Haley does something new every single day, I just feel silly posting about a new little phrase she says or a new mannerism she’s picked up.  Its all new and exciting to us, but seems a little boring for the general public. 

I used to use this blog as a form of therapy when we first started going through our Joubert journey.  It was cathartic to put my feelings on (virtual) paper and to be able to say things that my usual emotionally flat affect cannot express.  I say things on here that I don’t say to the people who are closest to me, its just easier that way.  As we began to get more and more used to the idea of not having a “normal” child and the shock of the diagnosis began to wear off, it didn’t feel quite so necessary to express my feelings.  I have pondered on whether or not to wrap up this blog and stop the slow death it has been experiencing for the last year.  I felt like I had a pretty good handle on life with a special needs child and really didn’t need to continue with my therapeutic blogging. 

Recently I have gotten a lot of email from people who have a newly diagnosed child with Joubert Syndrome letting me know how much this blog has helped them learn about JS and cope with what real life is like with Joubert Syndrome.  It makes me feel good to know that my little corner of the interwebs has helped someone.  I am beginning to feel a calling to continue writing and write more frequently for that reason.  If this blog helps just one person out there dealing with Joubert Syndrome not feel so alone, I have accomplished my mission.   

I am also feeling a new need to write because underneath my tough exterior of being a strong mom who has fully learned to cope with the everyday battles a special needs child faces, there is a mom with chinks in her armor.  Maybe I really do have something I need to say.   

Haley has a relatively mild case of Joubert Syndrome, we thank God everyday for that.  But this year has been particularly rough for the Joubert Syndrome family.  We have lost several young lives due to complications of Joubert Syndrome… has been a difficult getting the news that yet another child has passed away.  It feels like a piece of your soul is crushed when there is a JS death, because your child shares something so very rare in common with that child.  I can not imagine what those families are experiencing.  The Joubert family has also had a lot of hospital admissions and very very sick children.  I sit on pins and needles waiting for updates on how the kids are doing.  It has been difficult for me to sit here with my relatively healthy child while others are struggling every day.  I sometimes feel an overwhelming sense of guilt that Haley has been so healthy, and at the same time I feel overwhelmingly blessed.  Because of that guilt, I have have withdrawn from my Joubert family, maybe a sense of denial mixed with guilt….for that, I apologize for not reaching out to you all more!  

It is also very easy to forget what “normal” is when you are not confronted with it on a regular basis.  Sure, I see kids out in stores and in public acting and playing normally, but that is just in passing.  I can easily ignore them.  There are a lot of special needs children at Haley’s school, so abnormal is the norm there.  I see these kids everyday, I know their names, I know a lot of their stories, they are “normal” to me.  It is easy to push “normal” to the far corners of your mind but “normal” will sneak up on you and SMACK you in the face when you least expect it.  Of all seemingly innocuous things, I was faced with “normal” last night while watching “Father of the Bride”.  Thoughts were swirling in my mind.  Will Haley go to college, will Haley ever get married, will Haley every play basketball, will Haley ever slide down the banister of our stairs?  (we totally don’t have a banister, but that scene of Annie sliding down the banister made me wonder).  Those thoughts then lead to, “how will Haley be treated by other children when she goes to school, will people make fun of her, how will she deal with that, how will WE deal with that?” Will Haley ever be or experience “normal”?  She may look normal at first glance, but she still has a head tick, her speech is unintelligible to strangers, she can’t climb steps alone, she freaks out about things that most kids wouldn’t.  It may sound overly critical to talk about what’s “abnormal” about her, but its just the facts. And with that I realize, I have not fully dealt with what it means to have a special needs child.  I need this blog to continue to document our journey, to continue my understanding of life with a special needs child, and to continue my own personal healing. 

I am also sitting here listening to Bill Maher argue about the use of the word “retard” as I type.  That’s another discussion for another day.  BTW, I officially HATE that word, please DON’T use it around me.  I don’t care how you mean it, if you’re using as an adjective, if its just part of your everyday vocabulary, or if you think its absolutely ridiculous for people to be upset about “just a word”.  It upsets me.  Its not funny when your child with special needs falls under a word once used as medical definition but is now used as an demeaning adjective.  I will step off the soap box now. 

Thank you for sticking with me on this journey, I hope that I am able to resuscitate this blog to its former life of frequent posts full of mundane details, cute pictures, and cathartic blabbering! :)