#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.



Our life is lists right now.  Currently there is a list for:

  • Hubby's medication schedule 
  • My work to do list 
  • My home to do list that includes kids schedule and paperwork that has to get done for insurance, etc. 
  • Marfan Conference list for this weekend
  • Disney Cruise planning list (17 days away and I am just now getting it together)
Needless to say, i am over my head in to do items.  Most of them get done via text or email because without fail, as soon as I am on the phone, someone needs something that needs my attention.  

On each of the lists are things that in a normal day, are pretty simple to complete --- like "fax paperwork to office for submission to insurance".  Simple right --- run to the store where DH works and fax the papers to his office real quick. Ever tried to do that with a 10 month old baby, a 3 year old boy, and a 10 year old in tow?  Not so simple and quick.  

There is a pile of coupons and mailers on the table just waiting for me to go through them.  I am hoping to get that done before the expiration dates on said coupons.  

I am starting to think that I need another list listing all the lists I need to check each morning.  


Asking for Help

This post is very difficult for me to write.  Not because the subject is a tough one.  Not because I am afraid of reaction.  But because "I need some help" is the most difficult phrase for me to say.

But it's true.  I need some help.

An even harder part of that statement is that I don't know exactly what I need before I need it or when I will need it.  This kind of recovery takes over the whole routine of our household -- everything is coordinated based on medication schedules, energy levels, and having one adult driver for at least 8 weeks.

We have the greatest village ever --- I posted about it once and I bet I post about them all again and again and again.  Amazing doesn't begin to explain our friends and family.  We have had so many texts and emails and Facebook posts asking what people can do to help and what people can bring over to help.  I just dont know the answer to that. Everything is the answer but that's not very helpful either, is it?!

Friends organized a Take Them A Meal calendar -- and that is so so so helpful. A couple days a week just one less thing on my to do list.  Click here if you want to help that way.  Enter our last name and the password is the first 4 letters of our last name.  It really is just so amazing --- I mean, LOOK at my fridge right now.  Full of lunch and dinner options for my family that friends have brought over.  Everytime I go into the kitchen (which is A LOT these days), I smile because when I open that fridge, I see the love and support for our friends sitting on the shelves.

Visits are great.  Time starts to drag when you are sitting at home and watching tv, reading books, and scheduling doctor appointments.  And frankly, the hubby probably gets bored hearing all my chatter about random things.  So yes, please come visit.  A note about visits -- please do not be offended if hubby is sleepy or literally doses off mid-sentence after awhile.  And when you are here, I just may disappear.  Its not that I don't want to sit and chat -- I really do want to --- but when you are here and I know that the hubby is entertained and has someone there to help him if need be, I can get other things done like laundry or work or grocery shopping.

This is going to take awhile.  Energy levels will get better and better as time goes but its a long slow and steady process.  So my friends - be patient with us.  We WANT to hang out and we WANT to socialable again.  And the kids need to have a summer full of play dates and fun.  I am trying to work out a schedule that will allow us to do a little of all of it while maintaining all the medication schedules, my work schedule, and of course rest....lots of rest for the hubby.

I guess what I am trying to say is yes....the answer to your question of "how can I help" is yes, you can help. I just don't always know exactly what we need but even the smallest things make a huge difference in our life.