8/11/14

Depression Feels Like This

The world is a sadder place today with the loss of actor/comedian Robin Williams.  So many of my memories involve movies or tv shows that he starred in....I had a Mork doll when I was a kid, Mrs Doubtfire was the activity for my first real date in high school, and the Genie is quite possibly the best animated character ever.

Outside, Robin Williams spent his life making others laugh.  But inside, he struggled with a depression that made it hard for him to laugh, to look beyond the depression to see happiness, and in the end, in his mind it made it impossible for him to survive.

Depression is not something we should be looking past.  It is not something we should shrug off.  It is not a small issue that will go away if ignored.  It doesnt go away.  Ever.

Imagine your life during a time when everyone on the outside sees things going so well - you have a good job, your kids are happy and healthy, you and your husband really don't have any huge issues to deal with, and really, things are great.  However, inside no matter what you do, you are sad and unconnected.  Imagine knowing that its Saturday morning and the only thing on your calendar is playtime with the kids -- sounds great right?  Now imagine having to give yourself a pep talk to simply get out of bed.

Major depression does that to you.  It just lingers there.  You spent time at events reminding yourself that this is an enjoyable experience and that smiles and laughter are in order.

Many people -I would be willing to bet MOST people - have experienced a bout of depression - and probably during a tough time in their life....maybe after the death of a loved one or a loss of a significant relationship and even after having a baby.  Getting through those life changes are so so challenging I know.

I have battled depression for a long time - I have learned to live with it. Sometimes it creeps up and forces itself to be the primary emotion.  Most often, its just something I have learned to exist with - I fight through it and find so much joy in my life and during the hard times, I fight through to find strength to carry myself and my family to the good times again.  It is part of who I am and will always be part of who I am.  Its so scary to post it here so publicly but part of me feels so free in doing so - I bet there is someone reading this who is nodding their head, understanding every word.  And maybe someone out there will understand me or another friend of theirs just a bit better.  Sometimes that understanding by people in our lives makes things a bit better.

Reach out, they say.  Tell someone you are feeling down, they tell you.  Ask for help - another common request.  It. Is. So. Hard.  Asking for help required knowing what you need help with --- often its hard or impossible to verbalize that or maybe you dont even know what would help.  If someone has not experienced chronic depression, its hard to reach out when they dont know how it feels or understand it. And after awhile, people tire of hearing about your depression or just dont want to be involved in it anymore. A depressed person doesnt want to feel like a burden on anyone so not reaching out sometimes seems easier.

"Everyone has problems" or "yeah lifes tough" or "you need to exercise/eat better" and the never helpful "stop feeling sorry for yourself"....all comments that someone with depression really doesnt need to hear.  So what can you do if your friend is depressed?  Simply be there.  Show some empathy.  Encourage talking about it and help to shine the light on the good times.

Patience, patience, patience.  The dark clouds do lift and hopefully, these dark times are short lived,and the happy times are the norm.

So, rest is peace Robin Williams. You left behind laughter for the world -- that is pretty amazing.

8/4/14

See Ya Real Soon!

Last week, we (me and the kids) spent 4 days floating around the Caribbean Sea with various cartoon characters....Mickey and Minnie Mouse, Goofy and friends, and various princesses too.  The Disney Dream cruise boat was just simply awesome.

Our crew --- parents, siblings, kids, nephews, and cousin. 
My parents worked hard for 2 years to put the vacation together.....the entire family went cruising together for four days.  Two months ago, the Hubby was planning on being there too......with our current health scare, he had to stay behind.  I really did have mixed feelings as the plane took off that morning --- excited about taking the kids on this vacation of a lifetime and sad that I had to leave my sick husband behind.  Lucky for us, we have amazing friends and one of those awesome friend-family member stayed at our house to do the medication changes and just make sure that things were in line at home.

The kids had an amazing time and there were so many smiles and fun those four days.  Smiles and fun that we needed so so badly.

Now that we are home, Grace has already started a family piggy bank to save for another family cruise...when Daddy can go with us.  I think there is $50 in there already -- gotta start somewhere, right?!

Beach Baby at Nassau
Cousins


Will was so in love with Cinderella
Cousin Krista and Delaney


Captain Mickey!!!!!!
Me and my big girl


My kids make me smile so big
Most adorable pirate girls ever!!!!


Pirate family!
Will and Mike at Kids Club


7/15/14

#MarfanConf - Our First

The Hubby and Grace have Marfan Syndrome.  For us, Marfan Syndrome is part of our regular day to day life.  In the past couple years, we have connected with some great Marfan friends --- our Marf-friends we call them. Via Facebook and blogs and texts, we have shared Marfan experiences and exchanged information.  We have laughed together and cheered each other on during medical tests.  Some of these friends we have met in person and others we knew only online.

Grace and her buddy M from Musingsof a Marfan Mom.

Until this past weekend.

The Marfan Family Conference was in Baltimore and even with the craziness of the Hubby's current health scare, we were there.  And it was amazing.

Grace spent two days with other kids affected by Marfan Syndrome.  She came out of the conference with more confidence about her own issues with Marfan Syndrome and a broader view of  what Marfan Syndrome is and that there is a whole community out there that she belongs to.  Seeing the teens running their own sessions and supporting each other was inspiring and I know that Grace is already looking forward to being part of that group.
Grace and The Hubby on the red carpet at the Marfan Conference.  The Hubby did awesome the whole
 weekend -- just amazing being only 3 weeks post-op from heart surgery and still on IV meds --- so proud of him.
 

Even Delaney had a great time --- she found herself a baby friend and the two of them just played the weekend away.  I can't wait to see them grow up together at the conferences as years go by.


Marfan Syndrome has been in the news lately because of the diagnosis of an NBA draft pick Isaiah Austin. During the conference he agreed to be the spokesman for the Marfan Foundation along with Ron Williams (CEO of Cash Money Records).  Walking the halls while The Hubby listened to his surgeon Dr Cameron give a presentation, Delaney crawled right over to Isaiah and gave him a big smile.  She just loved him........and looked even smaller next to him.  They were instant buddies.  Grace was pretty thrilled when Isaiah spent time taking pictures and signing autographs for the kids at conference.  He really is a class act --- showing such grace and maturity during this time in his life when he planned on such a different kind of life.



Just being able to talk about the challenges and having an immediate understanding of the issues.  Being able to compare stories and experiences from various surgeries.  And to hear the encouraging research being done around the country on medications made me smile even when talking about cardiac issues in children -- its just so great what they are learning!

Connecting with other affected families was the best part of the entire weekend. We spent hours just standing in the hotel hallways chatting and laughing and learning.  We left Baltimore this weekend with more Marf-friends and more knowledge to make sure that the Hubby and Grace have the best care available.

Next year it's Chicago..........somehow we will get there too.