School.

G started kindergarten this year. I got her all dressed up the first day and sent her off to meet new friends and start her school "career".  Little did I know that 100 days into the school year, she will need more help than just her classroom teacher can provide.  That the principal and social worker and occupational therapist will all know us by sight.

It seems that G's fine motor skills are delayed.  Her handwriting is sloppy and not evenly spaced or written.  Quite frankly, she would be thrilled if she never had to write a lower case letter again - for whatever reason, they are harder for her.

Focusing is an issue.  Staying on task.  Following multi-step directions.  We were even told her coloring and artwork isnt up to 5 year old standards.

When I was researching Marfan Syndrome, during the pregnancy and even just last year, I always focused on the cardiac, vision, and skeletal issues - things that affect G directly. It never occurred to be to be concerned about how she held her pencil or if she was a state champion paper-cutter.  Guess I should have paid more attention to those things.

Her school is reacting the way I would expect - they see a child struggling and they start all sorts of assessments and therapies from OT to psychologists and speech therapists.  Today we met the school social worker - sociocultural interview.  If these things will help Grace thrive in school, I am all for it. 

I am her mom. I will fight like hell to get her the resources she needs to thrive in school, whether its as simple as larger font books and occupational therapy to develop her fine motor skills or if it means finding a school that has smaller class sizes and can give her more one on one attention.   I will fight for what is the right thing for G, regardless of what it is.

But inside me is a small (but loud) voice that just wants to stomp her feet and throw a Mommy-Tantrum.  WHY!?  Why my baby?  She already has to deal with Marfan cardiac, vision, and (minor) skeletal issues - why does she need to deal with this too?  Doesn't she deserve a little break so that something is easy for her!?

A Fresh Start

I started this blog for me. The intention was to give myself a place to "talk" about Marfan Syndrome and maybe one day have this blog reach others living with Marfan as well.  But I have not taken very good care of it, have I?  The last post was from 4 days into B's most recent surgery recovery.  That seems so long ago already.

How about a quick "catch up"?

Me:  Today is March 5 and I feel like the next few months, though the calendar is busy, are going to be good ones.  Not without challenges (more on those later!) but good times are ahead of us!

B:  Amazing recovery from his aortic valve replacement surgery in November.  The scar is looking better each day and we are getting used to the sound of the mechanical valve.  He is back at work full time; he actually started working again after 10 weeks at home.

G:  She is about the have a birthday - I cannot believe she is 6 years old.  No changes medically for her since the last appointment in Baltimore.

And so, I give this blog a fresh start.  Starting tomorrow morning.  We shall simply pick up there. 

Day 4

Surgery recovery is hard.  The incision hurts.  Nurses poke with needles at all hours of night.  Sleep is non-existent.  Machines beep.  And you have to drag an IV pole everywhere with you for days at a time.

What no one tells you is how boring it can be too.  You can only watch bad daytime tv for so long.  Magazines get so unexciting.  Yes, even the crappy gossip mags arent entertaining anymore.

Today we spent time napping and reading and did some Christmas shopping research online for Grace.

And tomorrow, we will probably do the same thing.

We are both really looking forward to going home to our own bed, our own tv selections, and most of all, our little girl.

A Teacher

We have started telling our friends and co-workers about the upcoming surgery.  We didnt tell too many people when we were first told that we needed to start talking to the surgeon and making decisions.  Its hard to tell people that you are having surgery when you dont have any information like when, where, and specifics about why and what the surgery is.  And so, we told our immediate family and that's it.

Now, we still dont have a firm date but we know that it is sometime between next week and December 2.  Seriously, that's all we know.  At this point, we are on the surgery calendar for December 2 but the genetics doc and surgeon are working to move that date closer.  And so, we wait for that phone call or email. 

In the meantime, we are preparing.  Dentist visits to check for gum infections.  Flu shots to prevent the family from getting sick during recovery.  Not RSVPing to any invitations because we have no idea if we can go to events. 

But most of all, I find myself teaching.  My friends, family, co-workers.  Everyone I tell about the surgery it seems.  Heart surgery - everyone gets that part of it.  But throw in a term like "Marfan Syndrome" and the glossy look spreads across their eyes because they have no idea what that is.  I think I have developed a pretty good "elevator speech" for describing the condition. 

Sometimes I get tired of explaining it.  Sometimes I just want them to already know about it and not ask me to tell them that my daughter has it too.  But most of the time, I am thrilled that I have a chance to teach one more person what Marfan Syndrome is and what to look for if they think someone in their family could have the condition.  Because the more people we teach about Marfan Syndrome, the more lives can be saved by management of the condition. 

And that is my job as the wife and mother of Marfan patients.  So teach I will.

My New Nickname

 Well, we have a surgery date but neither of us is really happy with it.  We have made all the decisions and just want to get on with the show.  Get in there, fix the problem, and move on with our life.  How many people do you know who wish for a surgery date sooner!!!???

It has only been a week or so since the consultation with the surgeon.  Since then, B has been to the dentist per the surgeon's request, flu shot appointments have been made for the entire family this weekend, and we have figured out vacation pay from both our jobs to cover our time out of the office.  I have my family on hold so that they can take care of G while I take care of B in the hospital for a week.  And I have updated the medical history and doctor contact information in B's Marfan Binder. 


All that in a week and we are still 6 1/2 weeks away from the surgery date.  My list of to dos as we get closer to the date gets longer and longer. 

But that is what the Marfan Manager Mom does.

Floods

Since getting the disgnosis from the eye doctor on Monday, every emotion I know of has crossed me.

When I heard the words, I cried. When I drove back to work, I was angry. When I put Grace to bed that night, I was sad. And now I am sick.

Last night my head hurt so after 2 Alev.es, I laid on the couch with G. And went to bed right after she did....at 9PM. Have you ever heard of such a thing?! It was great. But I spent all night tossing and turning and throwing up. Weird, huh? Today I feel weak and shaky and sick.

I am so exhausted emotionally. Could that really make sick?!