A lot can happen in 733 days

My poor blog. I love my blog....really I do. Never intended for 2 years (almost exactly!) to pass before I wrote again.  But, here we are.  

Is an update post needed - or do we just pick up where we are now? To truly update, the post would be wordy and long and you'd probably get bored somewhere along day 592. 

How about some highlights of today: 

• The baby went to kindergarten. 
• The Boy is a smart 2nd grader. 
• And the oldest started HIGH SCHOOL! 
• The dog is crazy. 

That's the update, friends! 

I missing writing. I am coming back to this platform.......a new So-Called Supermom is coming soon. 

And it's going to rock! 

We All Scream for Ice Cream!

Well, summer is over now and as I look back at this blog....well, I neglected to post all summer long.  I am okay with that.  It was a basic summer - I don't have any awesome vaca stories to tell and really - we worked, kids went to camps and day care, and we cheered our way through swim meets.

But tonight...tonight ended the summer. We did it the way we have done it every year for at least the last 6 years.....with ice cream. And friends.  I cannot believe how much the kids have grown over the years and this ice cream tradition grows in size every year. I love it.  I love these kids and I cannot wait to see what this year holds for all of them.

Preschool to HS in one picture!!!! In fact we are only missing grades 3,-5, 10, and 12 among all these kids!!!

The girls ---- they have known each other since they were Delaney's size!

Crazy boys - preschool through 2nd grade!

New Eyes

I just looked back at the posts for the past few months...and I realize that all you see is Grace.  Her eye surgeries and then her recovery struggles.

Yesterday made all of those hard moments okay.

Grace got her new glasses. It took almost a month for these lenses to be researched and produced...it was frustrating for all of us waiting this long. But the look on her face when she opened her eyes was amazing.

She could read a restaurant sign across the street. She read me text on a business card.  She saw her own earrings in her ears when looking in a mirror -- this is the first time she said she could actually SEE them clearly on her own.  Can you imagine that?!

As her eyes get used to the new lenses, her headaches will get better.  The fatigue should go away.

And oh how I cannot wait to hand her a book this summer and watch her experience reading clearly and easily!!!!

Today It All Worked

With two full time jobs between Hubby and I, three kids with very different schedules and needs, and medical issues that always seem to need attention, each day is different here.  

My grey hairs grow pretty quickly (and let me tell you - I am WAY overdue for a visit to my hair guy - note to self....schedule that pronto!).  Almost every day, I have an internal dialogue with myself about how tomorrow/next week/next month/next project, things are going to run smoothly and efficiently and exactly as planned.  Come back to read more after you stop laughing!!! :) 

Hubby and I run through schedules quick and decide who is taking which kid to their school/daycare in the morning and which one of us can be back on this side of town in time for pickup each day.  Its a give and take and beg and plead kind of situation.  

But sometimes, the madness just works.  

Today was one of those days.  And so it deserves a blog post to mark the occasion. 

Traffic cooperated this afternoon so I could drive from Point A to B to C for Grace's post-op appointment.  Then we rushed, through traffic again, to Point D and E for day care pick ups with perfect timing.  Dinner was in the slow cooker when we walked into the house. No one cried over the chosen menu tonight.  Bedtime was met with hugs and kisses and zero tears.  Homework got done and the violin was practiced.  

On top of all that, I wrote a list of eight things that needed completion tonight for a special event client of mine --- with the event less than a month away, we have a million details to confirm.  Six of those items are checked off and done. Not too bad! 

Weekdays are tough - there is such little time each day when we are all home and awake together. Most nights, Hubby and I see each other over the tops of our laptops on the couch.  Tonight, I can see the top of his head in the recliner as I sit in my office corner confirming event lighting and catering menus. 

I am typing this out and that inner dialogue is running. WHAT about today made things go exactly as planned?  WHY today? WHO made all that happen so well? And I think the answer is really simple - while at work, while with Grace at the doctor, feeding the kids dinner, and then working at home - I was 100% (okay, 90%) focused on the task in front of me.  I wasn't juggling three things at one time - the list was on the counter for work time so I was able to stop thinking of what needed to be done and just enjoy chatting with the kids tonight.  I was able to focus on Grace's medical questions at the doctor and plan out the next surgery without listening to the beeping of incoming emails.  

It's crazy and exhausting and sometimes its really hard to get through the day.  But days like today remind me that it's all possible.  

New Eyes

I've had mornings like this more than I can count anymore - finding comfy clothes for me, ensuring no breakfast for the patient, and packing a bag to entertain myself for one to six hours in a bland waiting room.  I like to think I'm pretty good at this!

This time feels so different. This time I am going through my pre-op checklist for my daughter, not my husband. It's basically the same things that need to be done but for some reason, it feels so different. 

Grace is having the first of two surgeries to remove her lens in each eye. They are preventing her from having good vision and we are seeing the affects daily - it's time to make things better.  

It's a fairly simple straightforward and routine surgery.  Doesn't make it any easier though - not to mention I have heard that one before and it hasn't been easy!

So if you are reading this, say a prayer - spread good wishes - think happy thoughts....whatever it is you do, send Grace (and her worried parents) a little love today.  

I cannot wait for her to see the world with new eyes!! 

Invitations

This week, Will passed out birthday party invitations to his class at day care. It's the first time he has invited a class of friends to his birthday.  What's even better is that he planned this party himself - invited people before Mom and Dad had said okay to a party.  

The RSVPs have started to come into my email box - none of his school friends can attend.  Apparently, one of the little girls in his class is also having a party on the same day at the same time. I had no idea.  An invitation to that party was never placed in Will's cubby at school and so all his friends will be at that party and not his.  It breaks my heart each time my Inbox beeps with another response. 

Trust me - Will's party will be just fine. Friends and family will be there. This week is all about him at home so he will turn 5 with fun and presents and love just the same. I doubt he will even realize any of that happened.  

But I realize it.  And I feel it.  

It's a familiar feeling - I get it often with Grace.  When I see the other kids in her classes and activities giggling together.  When I hear about birthday parties she isn't invited to.  When she is home after school and on the weekends with no social plans outside family stuff.  

My sweet big girl and adorable boy.

I have come to realize that the level of parent socializing is directly related to the social experience kids have.  And when your mom is extremely introverted and anxious when it comes to meeting new people, you are pretty much doomed.  I'm not on 17 PTO committees and I can't be at weekday school events and we don't live in an area with a neighborhood pool and activities and tot lot to hang out at.   My own social circle is small and that protection I have placed around me in that way has leaked into my kids lives. 

My kids are smart, loving, empathetic, loyal and funny.  They are great kids.  They want to run and play and be part of the gang. I know it's part of growing up but it hurts like hell when I see them hanging outside the circle - when they are friendly with their peers but not included when it comes to social events.  I remember that feeling and it sucks. 

The Buddy bench - have you seen that article? This is what that is about.  I wish there were Buddy Benches everywhere!!! 

As I am writing here, I don't want anyone to think "oh poor kids". I want people to look around - maybe that casual friend who is standing outside the circle just needs an invite to join you.  Maybe they don't know how to join in the activity or maybe they are a little anxious about approaching the larger group. Your child may find a new friend. You may expand your network of colleagues.  Maybe you will learn something new from that person.  But for sure you will make the day of your new friend. 

A Note Left for Mom

You hear all the time that once you are a parent, nothing is ever the same.  That everything changes.  And it does - there is no denying that.

Its been almost 12 years since I first became someone's Mom.  It amazes me still that those nurses let me leave the hospital with a brand new baby with no users manual or schedule or task list - nothing but me and the Hubby and our new car seat.

Every phase is hard.  You miss hours of sleep and then you worry about food allergies as they learn to eat. Eventually they learn to walk and can destroy a room in 4 seconds flat.  Don't forget about those epic temper tantrums in public places!  Its exhausting.

In our house, there are three kids - all in different phases....one toddler almost preschool age, one pre-K, and the oldest almost in middle school.  We are parenting in three different styles at all times. Often, people comment that the baby must be the hardest one.....actually, no.

Right now, navigating the new world of the Preteen has consumed my parenting.  Because she is preteen, I have to start editing what I share about her - its her story to tell when/how/if she decides. What I can tell you is that smiles hide insecurity, un-returned texts are sometimes a way to hide jealousy, and friends who never leave your side no matter what mean everything.

I am constantly fighting a battle with myself - am I giving the kids enough attention? Do they understand that late nights at work aren't my choice - but I am doing it for them, to make sure they have what they need.  Do they get it when there is a little tough love to learn that life isn't always fair but that we love them all the time?

Parenting is hard............but notes like this left on my desk make all those hard moments completely and totally worth it.

How I Feel Five Years Later

"Well, isn't it great that all of that is behind everyone now?" An innocent comment - and pretty logical too - when I mentioned that this week is the five year anniversary of one of our most major medical issues.

But it's not behind me. It's always right in front of me and behind me.  That experience changed me so deeply that I am not the same person I was the day before and I'm not sure I am the person I am meant to be yet either.

Headache
Shivers - feeling cold even in the summer
Rapid breathing - can't catch your breathe
Crying
Shakes
Inability to focus or complete a task
Need for quiet
Aggravated by even simple requests
Exhaustion but can't sleep
Fear of letting the emotions out

That's what it feels like when the anxiety attacks.  Sometimes there is a warning and I can adjust to keep it at bay - to keep it from overtaking my carefully guarded self.

It won this week.

Five years ago, I almost lost The Hubby.  It was a simple surgery gone bad. It was terrifying.  It was hours and hours and hours of unknown outcomes and trusting doctors I didn't know to save him.  If you want to know what was happening at this exact time five years ago, I can still tell you. I can tell you what I was wearing.  I re-read that blog post I wrote -- and all exactly accurate.  What I never wrote was the surgeon telling me that she didn't know if he would survive.  That for a couple hours in the middle of the night no one could say the outcome would be a good one for him.  It didn't tell you about the hours I sat in that room, listening to the machines beeping asking for a miracle.

Yes, I understand that it is over and that the outcome was the best - Hubby came home and recovered. Doctors even now remark that they are amazed he survived what he did.  I know all that. I acknowledge all that and I am so so so grateful for it.  All of that is very logical.

Anxiety and PTSD don't care so much about logic.  They are always there, lurking in the background for me. I manage those feelings pretty well - I think - by simply making sure they don't get the best of me - I smile when I want to scream, I take a deep breath when I want to crumble and cry.  And I just keep moving forward, one step at a time, when the overwhelming waves of worry and fear and sadness try to take over.

Life goes on and other things need my attention - my children need my love, my job needs my creativity. and my husband needs his wife.  We are okay - we are all here. Together.  That is what matters.

Making It Happen - The New Plan

I just finished a huge event at work - over 2,000 people at a regional trade show.  Pretty great event if I say so myself....and I am pretty psyched that the evaluations agree with me.  Who doesn't like when their work is validated that way?!

Now that life isn't focused around the crazy pre-event days or the late night work sessions after the kids' bedtimes, I find myself a little lost. There are so many things on the normal to do list but I am struggling to focus my energy.  

Those who know me well know this about me: I do best in crazy times.  Give me 3 deadlines, a school event, house projects, and for good measure - add a medical appointment or two.  I may be running around 15 hours a day but I thrive in that.  I focus, I prioritize, and it gets done.  It all happens.  

Give me downtime and my mind wanders.  I think about the 17 different paths to accomplish one goal and guess what - at the end of the day, I haven't started down any of those paths.  

Is it the fear of the downtime that keeps me from getting this list completed? If the list is never done, there is always something to rush around to complete. Do I just secretly want to not accomplish these goals - are these goals one I THINK I want but deep down really don't? I have no idea. 

Finding a way to keep myself on task and motivated is the newest biggest goal - first step - HOW?! Since I know that I need external deadlines/pressure to "make it happen", I am creating that myself in my office.  A white board - on my wall for my boss, my coworkers and even my visitors to see.  Every Friday, I will spend an hour organizing the week ahead and posting the 5 top priorities/tasks to complete.  Having them up there for everyone to see should help me ensure they get crossed off - because nobody wants to be questioned about why your to do list for 5 months ago is still posted on the wall! 

Today is Friday. Step 1 complete - hang whiteboard. Step 2 --- off to find some Dry Erase markers! 

Who Do I Call?

We are blessed that we live a short drive from the world's experts on Marfan Syndrome. I can email our genetic team anytime I have a question and I have a response pretty quickly.  I can even Facebook message a genetic counselor for answers.  We are so blessed in that.

Bill and I have been married for 12 years - he has known about his Marfan Syndrome diagnosis since he was a young child.  Grace was diagnosed 8 years ago. We have been at this "managing Marfan" thing for awhile now....we still learn new things about it every day but in general, we feel pretty confident most days.

Until now.

Right now, we are experiencing another impact of having a rare disease.  Grace is having some vision issues. I can't simply walk into any eye clinic and get the right exams for her.  I can't assume that because they have degrees in optometry or opthamology, that they know how to treat a Marfan patient. We have an amazing optometrist who can make Grace and Bill's prescription work for them. We have a retina surgeon who we trust to save Bill's sight when his retina detaches - and this same doctor's group will watch Grace's retina too so we can catch issues early.  The list of eye doctors who specialize in genetics and lenses and connective tissue disorders and pediatrics is incredibly small.

This week, I stared at the search screen not knowing what to search for or what I even need to find in a doctor.  For the first time since I learned about Marfan Syndrome, I don't know who to call to help my Marfan love, my first baby.   For the first time, I didn't have the answer to "so who is my appointment with next?".

This is where the network comes in.  Posting in Facebook groups asking for referrals.  Emailing friends of friends of friends who also have Marfan Syndrome and live in the same state hoping they might have a recommendation for you.  Spending an hour on the phone with a world famous medical facility trying to make an appointment with someone who comes highly recommended only to find out the doctor left the practice, and no, no one has really stepped into that specialty yet.

The helpless feeling as you tell your child that you are working hard to find the right doctor.  That she is doing great working around the challenge and that it will be okay but first Mom and Dad need some time to figure it out.  It sucks.  

February 29 is Rare Disease Day. Take a few moments to learn about a rare disease - reach out to a friend who deals with one and ask about it.  Find a way to support those affected by syndromes/diseases/illnesses that are difficult to diagnose, difficult to predict or difficult to understand. It's not hard to support those of us who deal with these things - a friendly text or email or Facebook message letting us know you are thinking of us and are cheering us on, ask a question to learn about what we deal with, spread awareness to your network to get other people learning and talking.

Learn about Marfan Syndrome at www.marfan.org.  Or ask me.  I am always happy to spread awareness about Marfan, talk about its impact on our daily life, and to tell people how to find out if you or a loved on has Marfan Syndrome or related syndrome. Know the signs - it saves lives!

Back At It

I could write an entire post full of excuses of WHY it has taken me 6 months to come back here.  But really - do you want to read those? My guess is no.  Because you know them; I bet many of you live those same excuses.

Summary: Life happened.  Some pretty awesome stuff and some not-so-awesome stuff. but guess what - we survived (again) and here we are.

I miss writing.  I miss having a place to put my thoughts to paper...or at least the keyboard.  And I miss the thought that maybe somewhere, someone reads this blog (besides me) and finds something redeeming about it.

And so, I am back to the blog.  I have even scheduled time in my planner to write - because these days, if it's not in my planner, it doesnt happen.  First writing day is tomorrow so stay tuned! :)

Transitioning Back To Work

Three years ago, I said goodbye to one of my favorite jobs ever - the people, the work, everything about that position was amazing. My career took more leaps and bounds forward during my time there than anywhere else.

New head shot for the new job!
Photo by Chuck Fazio

My family needed me home part-time and so I was.  Except I really wasn't.  While I drove the Mom Taxi around town for kid activities and ran errands, I was playing post-op nurse for the Hubby and working part-time at another association as well as working on launching my own event business (a dream of mine since......forever!).

Now today, well two months ago to be exact, I went back to work.  Back to the Monday through Friday schedule, back to rush hour commuting, and back to the office.  The kids miss me and I miss them.   The baby is at day care and the two older kids are still home with the Hubby for now as he is still working on recovery himself.

There have been moments but the transition has gone pretty smoothly.  How?

Routine.  We have pretty defined routines in the morning. Down to who gets each kid up and dressed and what breakfast options are.  It really keeps arguments and delays in the morning down to a minimum.

I get up before any of the kids are awake - or at least the kids are still in a bed quiet.  It lets me get dressed and hair/makeup on (aka let's me transform!) before the madness of dressing the kids and making breakfast.

Organize All The "Stuff".  Once I am downstairs, that's it.  I try to bring everything I need downstairs with me the first time so there is less up and down and up and down runs as the clock ticks down to departure time.  Some mornings I manage this perfectly - most mornings I can limit my up and down trip to one extra trip - not bad!!!!! My work bag is packed and ready before I go to bed each night.

Work is for Work.  Home is for Family.  So far I have managed to not bring work home.  I have talked about work but no files or email from home. Hopefully I can keep work from taking over my home life --- close to event times that may not be totally possible, I am going to try to protect my family time.  When I do have work to do (beside the full time job, I am managing my IT WORKS business and my wedding/special event planning company too!), I wait until after bedtime to open the laptop.

Staying Connected During The Day.  The fact that the Hubby is still home probably makes this a little easier.  The kids still have a parent at home and they haven't had to alter their activities.  I get to text or call the house to check in anytime and I get pics during the day to feel connected to whatever they are doing during the day. This will change once Hubby goes back to work but for now, its great.

Focus on The Good Stuff.  Loving my work helps too - I don't dread sitting down at my desk each day and even on those days when the clock moves slowly, I don't hate being there.   I miss my kids.  I miss eating lunch with them and reading books and taking them on daytime outings.  I even miss the madness of trying to get two little ones to take naps at the same time.  I could spend all day thinking about what I am missing but instead I focus on what goodness this transition brings to my family ---- stable income, happier mommy, and the chance for the kids to see that other adults in their life (teachers, day care, friends) are there to help them and love them too.

The honeymoon phase of a new job is pretty close to over --- it feels normal again to be a full-time-working-outside-the-house-mom.  Loving it now and looking forward to more great adventures ahead for us in this new normal.

"Near, far, in our motor car Oh what a happy time we'll spend"

I am a sucker for local events - festivals, fairs, parades, and this weekend, I am all about local theatre. One of my former cheerleaders is making her stage debut and I cannot wait! So proud of her.  

Have you ever seen Chitty Chitty Bang Bang? Do you know the story?  An eccentric inventor sets about restoring an old race car from a scrap heap with the help of his children. They soon discover the car has magical properties including the ability to float and take flight. Trouble occurs when the evil Baron Bomburst desires the magic car for himself. The music - so fun and instantly recognizable. As soon as you hear the theme song, you remember every word!  Well I do after seeing the movie as a kid.  

The Alliance Theatre is producing this show at Chantilly High School and it opens THIS WEEKEND! Tickets are only $16 and can be purchased by clicking here.  

The performance schedule is: 

Friday, July 24th at 7:30pm
Saturday, July 25th at 7:30pm
Sunday, July 26th at 2:00pm
Thursday, July 30th at 7:30pm
Friday, July 31st at 7:30pm
Saturday, August 1st at 7:30pm
Sunday, August 2nd at 2:00pm

The cast is full of local kids and local actors --- support them and take your kids and family to see the show!

Enjoy! 

Friends

We - and yes, I am speaking for my whole family - are pretty high maintenance friends.  We don't want to be but we are.  Over the past few years, we have asked a lot of our friends from needing overnight and long term help with the kids to sitting in hospitals and not being able to help with carpools or outings. 

Someone said one day "oh you guys got this!".  Well, yeah we do because there isn't really another option.  And since we have done this before - this major surgery and then recovery - it looks as if its easy and just a simple process.  Part of me is glad that we are able to fall into this routine quickly (makes it easier on the kids) but what isn't seen is the exhaustion, the pain, the paperwork and bills, the shelf full of medications with a morning, afternoon, and evening routine.  And the loneliness - that may be one of the worst parts. 

Friendships are so hard for me lately.  The past handful of years have been difficult in that way.  I look back and there are just so many friendships that have fallen to the wayside. Some I know why and some I don't.  I see my friends all hanging out with each other and I miss being part of the group.  I hold on to these silly inside-jokes from years ago because they make me feel like somehow, I am still connected.  That somewhere in there, the friendship is still there.

Being friends with me this year meant listening to the current medical issues and hearing me ask for help again with the kids or house.  No part of my life went untouched by the medical and career roller coaster of this year. I was - and frankly still am - so wrapped up in my family's own transitions and worries that I am completely blind to what kind of friend my friends need me to be for them.  I am so sorry for that.

I have been lonely.  I have been angry.  I have been jealous.  This year, I have said no to most celebratory occasions with our friends - missed birthdays, baptisms and baby dedications, and I am sure there are events that happened that I don't even know about.   I will forever be sad to have missed those moments.

I have changed.  These experiences have changed me - they have made me more sure of what I want, they have made me more anxious, they have made me more focused on my family's needs over anything else at all times no matter what, and they have made me stronger than ever.  They have also made me realize what to get upset about and what, frankly, isn't a huge massive issue and therefore not one I deal with for long.  I have also realized how lonely we are - how isolated we feel from the very social life we lived just a year ago. 

I am not good at reaching out.  I am not good at intimate conversations -- I hate hate hate confrontation. I can write and so I do that.  And I hope that one day....well, I don't know.  But I know that I miss my friends. 

We Made It A Year

I would love to sit down and write a post about how this year has taught us all sorts of important lessons about life and family and friendship.  I would love to write about how I learned more about my own strength and resiliency and how I feel powerful in knowing that I can make it through hard times.

All those things are true - all those things were a part of the past year.  But sometimes, and today is that some time, I don't want to sit and think about silver linings or lessons.  What I want is normal.

A year ago today, I brought the Hubby to the ER with shakes, chills, weakness and an extreme fever. 6 days later he had urgent/emergency open heart surgery that lasted until the middle of the night.  He spent almost 3 days under anesthisia with an open chest in ICU and then stayed there - an hour away from home - for another 10 days.  The entire summer spent recovering at home.  Nine months later, he went back to the OR and we are still in the initial recovery from that second OR visit within one year.

It sucks.  It's not fair.  And I am ready for my family to get some normal back in our lives.

There has not been a month in the last year that we haven't had to lean on someone to help our family get through something - whether it was babysitting our kids so I could take Hubby to and from the doctors or relying on people for dinner deliveries because simply thinking about cooking at the end of the day was too exhausting for me to do and even asking for help with money when what we did have was stolen from us.  Its been a hell of a year and one I am glad is over.

Except it isn't over.  It just keeps going and going and going.  We are marking today with another trip to a doctor for a surgical followup.  Another mini-road trip to Hopkins. Another day spent together - but in a hospital office.  And another month of exhaustion, recovery, and needing help.

I am sure no one wants to hear the hard stuff - it's so much easier to post about how Hubby is getting stronger and it's much cuter to post pictures of the kids chasing bubbles in the yard while Hubby sits in a chair on the porch.  And those things are happening and strength is coming back slowly every day.  What I don't post is the medication schedule, the gauze dressings that need applying daily, or the scheduling of all outings because we have one adult who can drive and the other one still isn't cleared to pick up a child for diaper changes or to simply load them all into the car. I don't post these things because - well, who wants to hear your friend whine about their day?  I mean, come on! I don't even like listening to myself complain about it.  But in the end, this is what our world has been for a year now.

I miss my career, I miss my friends, I miss our little mini-road trips to ice cream places or area festivals.  I miss being able to make plans more than 5 days out.  I miss our life.


A year ago today it began....and today I am holding on to the hope that a new chapter is right around the corner for us.  A new chapter that we can look back and say "damn, we made it through hell and we are doing okay now".  A chapter where Hubby isn't in constant recovery pain where he can do all the things he loves to do with the kids.  A chapter where the kids don't have to worry about doctors and hospitals and one where the kids get to enjoy their parents.  A chapter where Hubby and I are both fully functioning, have our careers on track, and our family moving forward to a place of fun and smiles.

Spontaneous isn't All That Great

So here we are...again. The night before another surgery.  This one on his eye.

Sometime over the last couple days, the Hubby detached his retina.  And cannot see out that eye at all. 

How do you fix that?! Well, surgery.  Eye surgery.  And even though it's out-patient, the recovery at home is not fun.  Hubby will have to lay facedown for 23 hours a day for 5 days.  He can get up for meals and quick shower but other than that, facedown.  It's really hard under normal circumstance but remember - he has an 18 inch incision on his abdomen right now that is still only 6 weeks old and therefore still very painful.  

Detached retinas can happen to anyone for dozens of reasons. When you are have Marfan Syndrome, they can be spontaneous.  Literally one day things are fine and the next they aren't. That's what happened to the Hubby this weekend. Spontaneous detachment. Aren't we lucky?!

The plus side is we have done this before and we know the surgeon.  And he is really good at what he does.  The good news is also that this surgery should restore Hubby's vision over the next month or so.  But it's another surgery.  Another added recovery to the one he is already managing.  

I struggle a lot with trying to take care of the kids, a dog, a house, my businesses, and life in general on top of caring for Hubby during major recoveries. This new surgery is tough - it has to be done immediately but that means I lose the little bit of help he can do right now around the house.  

So tonight I prep - laundry started, work emails out, phone chargers packed. Kid care is priced together with friends who still manage to say "okay" when I ask for more help with my kids and family who loves the time with the kids but who is also ready for some normalcy.  It's hard on everyone. 

But what I try to tell myself is this: Yes the last few years have been hard. Really hard.  I am tired - mentally and emotionally and physically.  So is Hubby.  He is tired of being the patient.  He is tired of hurting and he is tired that recovery is hard on our family. But we get through it.  Day by day. Sometimes it's hour by hour. But we get through.  And someday, it will all be okay again and we can get back to the business of being us (we used to be super fun, social people - this recovery life doesn't lend itself to that). 

But first, we are perfecting our recovery skills one more time with retina surgery. 

We will win this battle. Together.  

History Flys Over

The end of last week was he 70th anniversary of  (VE)Victory in Europe Day - the day when World War 2 ended in Europe.   To mark the occasion, DC experienced something never before seen - a flyover of WW2 aircraft in historical sequence representing the major battles.  To see all the information about the flyover, check out the official site of Arsenal of Democracy Flyover. 

The hubby and I packed up snacks and water and chairs and headed towards the city. The city was packed for the event so we found a great memorial park on the side of the parkway leading to the airport and along the Potomac River, just across from the Washington Monument and Memorial Bridge.  An amazing viewpoint to see all the planes entering the nation's capital and flying right over us.  It was awesome.  The kids thought it was cool to see planes so low over them (only about 1,000 feet up!) and Hubby and I were just in awe of the history and awesomeness of our US history right above our heads. 

I, of course, brought my camera.  Enjoy.

As Heard at a Sleepover

The players: Me, Grace - my 11 year old daughter who has clearly entered the dramatic preteen years earlier than I was prepared for; A - Grace's BFF who is like another daughter to me and equally as hilarious as Grace as they start this growing up thing.

Conversation while I was putting laundry away in the baby's room: 

A: So can I have that dress Miss Jaime when [new crush's name] and I adopt a baby girl?
Me: Ummm sure A.. Do you want to adopt one day?! That's great. Why?
A: Well cause my mom told me that is super painful to have a baby
Grace: Yeah and it's totally gross how the baby gets there too
A: Yeah it's all painful and totally gross. 

Advice from the BFF when Grace has to deal with the meanest mom ever in the whole world (I told her that she would have to find her phone herself since she missplaced it herself - can you even IMAGINE that!?) 

A: Grace, just stop walking. Sit down Grace.  Take a chill pill - its not that big of a problem.  Okay, did you take a chill pill now?
Grace:  Okay, I took a chill pill.

The Grand Plans made by the 11 year olds

Grace: So this weekend is Mother's Day.  And we know that there isn't much planned so we thought of a great idea! A can sleepover and you can drive us to the mall. And we might buy you a Starbucks there.  We want to go to our favorite store but you can just shop in the kids store next door.  We will text you when we are done and ready for you to come back (aka need money to buy things).  It's like your Mother's Day present!!!
Me: Oh, so I get the privledge of driving you to the mall on a Friday night as my Mother's Day gift?
Grace: Yeah.  But we will totally buy you a Starbucks.  But if you get that new Frapp, will you share with us?

Friday night - little kids are in bed, the Hubby has his pain meds and is resting, and we can finally leave for the mall outing 

Me: Girls, get your stuff and let's go.  Hey -- why did you change Grace; you were adorable in that cute dress today.
Grace:  Cause Mom.  We are going to the mall and wearing our Paris outfits.
A: Yea, Mrs Jaime.  I am going to change at my house too before we go.
Grace:  Mom! There might be cute boys there and we want to wear our matching Paris stuff.
A: Well, most of the cute boys hang out at [the sports facility] but you never know so you should always be ready to see them!
Me:  (shaking my head in disbelief and in fear of the teenage years)

Overheard in the back seat en route to the mall, listening to NKOTB at their request: 

I can't wait til we are old - or like our parents age - and they do One Direction reunion concerts.
That will be so cool!

The Big 4

Four years!??! Can that really be?!  Will, my boy, turned 4 years old today.  He came into our life during some tough times and here we are again, in a similar situation....Daddy is in surgery recovery so there is no "normal" to come home too.  But this boy brings so much love into our world that no amount of upheaval at home can change how awesome his birthday is!

Will is ALL boy --- cars, trucks, dinosaurs, superheroes, Ninja Turtles.  He never walks - instead he runs.  He wakes up at 100% energy and maintains that level all day long.  He idolizes his big sister and is such a sweet big brother.  When he lets me, his cuddles light up my day.  And he is an amazing bear hugger...again, when he is in the mood of course!

The past few weeks he has grown up so much - he is doing more and more for himself and gets excited to do "big kid" things around the house.

Happy birthday my boy.  Love you super much!!!

Guilt

I wish I could be in two places at once.  I wish I could pack up my whole family and just never have to split time or efforts between them.  But whether its a job or, in our current happenings here, a medical situation, it's a never-ending, always-losing battle I fight.

For 3 1/2 days, I left the kids at home and went with the Hubby to the hospital 55 miles away.  The kids weren't alone -- they had their very loved grandmother (aka MoMo) and spent the days with friends. Pretty sure they were more spoiled in those days than a normal week.  From-scratch dinners every single night?! Only when MoMo is in charge. Baking cookies just cause? Yep - with MoMo of course!  Even my "other-mother" MoMo's BFF came over (we call her Bop).  If you add "Bop's Special" or "MoMo-Made" in front of any meal, the kids will eat it, even if 5 minutes ago they swore it was the most horrible meal ever.  So I know the kids were okay. But that didn't stop the guilt.  It didn't stop my heart wanting to go home to hug them, to tell them Daddy was hurting but okay, and that I was okay too.  The texts and the phone calls begging me to come home were so hard - made the tears come each time.  My mom  put her own life on hold for these couple days to help me out and that made me feel bad too...especially when my boy caught a stomach bug.  I was away from my kids and it made me sad.  I sat in hospital waiting rooms, ICU halls, and finally in-patient rooms missing them and feeling so guilty that I wasn't home.

The hubby needed me.  It wasn't a "just to have someone to talk to" kind of need.  It was a need to have someone there able to make important decisions; someone who could fight for him when he or I disagreed with recovery plans; someone to literally help him sit up straight for the first time.  It isn't fun. It is not a time I wish anyone to have to live through - seeing your loved one - your husband - in pain like that, with scars and tubes and beeping machines - is not something I want anyone to really be able to understand.  It's hard on your heart and on your mind and on everything.  He needed me these couple days.  The hard recovery is starting now....and just as it is starting, I had to leave him behind.  Alone in the hospital.  Sure he has nurses to give him meds and make sure his sheets get changed every 24 hours and to page the doctor as needed.  But he is alone in that hospital room as he experiences the beginning of what is going to be a painful and long recovery - just typing that makes my tears start.

I am split between both worlds. While I was at the hospital, I was on my phone - texting, calling, emailing - home all the time.  Now that I am home again, my phone is always in hand so I don't miss any notes from nurses or the Hubby about his progress and the recovery plans.

I miss my kids.  I miss my husband.  I miss my family being together.

No matter what, I am guilty of leaving someone or something behind.  I am running on empty - my emotional tank is so full that it has overflowed with guilt and stress and sadness and exhaustion. But I put one foot in front of the other and march on.  Because that is what is needed. It's what we do when we are pulled in different directions - do what you can with what you have in that moment.  I am trying hard to accept that I cannot be in two places at once, that I need to focus on the most important items and let the rest fall away, and that there isn't anyway to really explain this to anyone.  Learning to just keep moving is so so hard.

The guilt is the worst.