I have to tell you about my weekend!  But I have to try to find the words to describe it.  I knew it would be fun.  I knew I would get encouraged and inspired.  But it was even more so then I thought it would be!  For those of you who are new to my blog, I belong to two groups that support Emma’s condition (SOD)  They are the MAGIC Foundation and Focus Families.  They provide such a wonderful support system to me.  Always.  Whenever I need it.  They were especially supportive in the beginning when Emma was first diagnosed.  Through the emails, you become familiar, friendly, and in some cases very close with these people.  3 of my close friends came out this weekend!  One I had never met before, and I was really excited to meet her.  I picked Sarah and her friend up at the airport.  It was an interesting meeting as we had never met before, and Sarah is blind.  I couldn’t hold up a sign for her, and didn’t want to call her name out!  Fortunately it was easy to spot Sarah and her friend.  They had guide dogs with them, and Sarah had also told me what they were wearing (Sarah and her friend, not the dogs!).  And from that point there was an ease to the friendship.  It was like old friends reuniting.  Except- and I did admit this to Sarah- I didn’t have any experience with bling people.  What should I do?  How do they need help?  She laughed it off by joking that first I needed to kiss her feet.  This was not going to be as hard as I thought!

To say that Sarah is an inspiration is a huge understatement.  She’s my age and living completely independently.  While she doesn’t have the hormone deficiencies that many people with SOD have, she’s got her plate full of other conditions that continue to challenge her.  But she never is down about it.  She doesn’t complain about it.  She does what she can and she does remarkably well.  She is a huge advocate for teaching children some independence.  It doesn’t matter how severe the condition is, every child can have some independence and it’s so important in their upbringing.  Sarah most certainly didn’t get to where she is today because she was sheltered and given everything she wanted.  She has worked very hard to get where she is.  And I’m sure it wasn’t rainbows and butterflies the whole time, she is who she is because of her wonderful upbringing.  And she emphasizes that to the parents on the list who may want to coddle their child.  I love that she speaks her mind, too.  She’s a smart cookie and isn’t afraid to share her knowledge or her experience.  She’s helped encourage me to push Emma to try new things.  Or to back off when I want to shelter her more than I should.  If I have questions about her schooling, she’s willing to offer her two cents.  And then there’s her dog.  Fargo is C.U.T.E.  And so sweet and well-behaved.  We became friends fast when he laid on my feet the first day at lunch!

"Fantabulous Fargo"

I haven’t even told you about my weekend!  Or my other friend, Marshelle!  I will save that for tomorrow.  It’s worth sharing!

And…did you know I took 909 pictures during our 11 days in California?  I need to go through and pick a few of my favorites to share with you.  We had a GREAT trip!  So stay tuned….I have  more for ya!!  Also, I wanted to remind you that I have a Facebook page and would love if you liked me!  You can visit me here.

Very early on in Emma’s diagnosis, I got connected with two organizations that had online communities.  I  became very involved with them through email.  I started friendships.  I received advice and encouragement.  That support has meant the world to me.  No joke.

If you are a parent of a child with special needs, my advice to you is to get connected. You won’t be sorry.  Google whatever syndrome it may be, and see where you end up!  One of my groups is through Google…it’s so easy to stay connected with them, and there’s always someone there to help answer a question!  The best thing about forming these bonds is that these people know exactly what you’re going through.  Seriously.  Everytime I have a question, someone has “been there, done that” and has taken the time to help me with it.  There’s no comfort quite like it.

If you want to take that “connection” one step further, attend a conference.  Emma and I have the amazing experience of meeting my “online friends” this summer at the MAGIC Foundation annual conference outside of Chicago.  I can’t even begin to tell you what an amazing time I had.  We were part of a huge family where no one was looked at oddly…no rude comments were made…no explanations had to be given.  It was truly magical!  During the day, I would attend educational sessions with doctors, psychologists, etc.  Emma had a blast in the day care that was provided right down the hall!  At night, they put on wonderful dinners for everyone to attend.  There was dancing, games, music, and more.  Truly fun for the whole family! And since we were out there, we spent an additional 5 days in Chicago and had a BLAST!!  (wonderful city, by the way…I’ll be going back!)

So in the end, my advice is to get connected with your community.  Let me know if you need help!

Emily and Emma at the MAGIC Foundation

A field trip to the local water park in Illinois.

I am SO lucky to call these ladies close friends! They "get it"!

Are you connected with any groups?

Finding out your child has special needs is not an easy pill to swallow.  For me, finding out Emma had developmental delays was an even harder pill to swallow.  When we were in the hospital was when we got her medical diagnosis: Septo Optic Dysplasia (from now on I’ll use the acronym SOD).  To us, that was all medical.  Those “special needs” were going to take getting used to, but we’d get there.  Like I said, it was a life sentence, not a death sentence.  However, it was when we had her tested in the public school system that we learned she had developmental delays.  What does that mean?  Well, with Emma, it included cognitive, emotional, social, physical (gross and especially fine motor skills).  She had delays pretty much across the board.  As a parent, that brings up a whole new set of concerns.  We already had concerns for her medical well-being, and now we were facing so many questions regarding her mental well-being.  It was like a dark cloud hanging over us.

When things like this have happened, and they’ve happened quite a few times for us, I’ve learned that it’s best to figure out how to deal with it.  Nothing can be accomplished by wondering “why me?” “why her” “why did this happen?”  It happened…let’s find a way to work with it.

The first thing I typically do is research.  I look up information online, and I look for support.  With Emma’s new diagnosis of SOD, I came across 2 groups.  The first was FOCUS Families.  One of the founders lives right here in Arizona and she’s a great lady!  Her adopted daughter has SOD.  I immediately connected with their online email group and I shared Emma’s story.  I received so many emails of support and encouragement.  To find a “family” out there that can understand what we were going through meant the world to me, especially since SOD is not all that common (estimated 1 in 300,000 kids).   The next group I found was the MAGIC Foundation.  They are based out of Chicago and MAGIC stands for Major Aspects of Growth In Children.  Their foundation deals with any condition related to growth.  Again, just another support system that helped me keep my chin up when it wasn’t easy to do.

My recommendation, when someone is dealt a blow, is to find support.  It’s good to research and find more about the condition, but hearing stories from people who “have been there” is invaluable.  If anyone needs help with finding support for a new diagnosis, or for anything, please leave me a comment and I will do my best!

When you’ve got a Dark Cloud Above, what do you do?