A little bit of me

In the hospital, both times, I remember feeling so isolated and alone.

I would read on Facebook or on blogs about my friends and their fabulous lives.  Of course people normally just post the awesome stuff – rarely allowing the world to see the down side of their lives.

I couldn’t believe the world was going on while I watched Evan suffer and struggle.

Yet again, another reminder that life went on – must go on – despite of how I felt.

I’ve posted about how much pain I’ve been in and the hurt I’ve experienced ever since Evan was born with the loss of friendships and the realization that our lives as special needs parents have become too much for some people in my life.  Probably the reality of my life – the hospital, the surgeries, the fear, the possibility of loss – may be too much for them to handle.  I’ll never know why my family was abandoned during some of the darkest times of our lives.

Now…let me share with you some of the light that has surrounded me – us – as a family.

I have some really amazing friends.  I can now count those people in my life on a hand and half 🙂

I never knew how important friendships were until recently.

Not the skin deep, meet up for dinner a couple of times a year, maybe a text here and there, wish you a Happy Birthday, like my comment and picture on Facebook kind of friendship.

I’m talking about the diving into the souls of one another, allowing our skeletons in the closet to come out and play, the being there no matter what what kind of friendship.

I’m reminded daily of these friendships when I look down at my wrist at the gift they gave me for my birthday this past December.  They gave this to me saying to stay strong and remember that I’m going to love Evan and hold his heart in my own no matter what happens.

Little do they know….I look down at this bracelet and am reminded that in these dark times we are in as a family…someone is holding onto my heart that feels like it breaks a little each day as I watch with fear, anticipation, and worry about the unknown for my boy.

In the hospital – I got texts, emails and calls from these women checking on me – if not daily – at least a couple of times a week. Never asking for information – no hidden agenda – just a friend checking on another friend – reminding me they were there for me.

They rearranged work schedules, hired sitters, found time in their busy lives as moms and working moms to come visit me – rescue me – from the monotony of the hospital.  I could see in their eyes as they walked in Evan’s room – a little bit of fear, a little bit of apprehension – but they sucked it up – and were there for me.

I don’t know how to express how much that meant to me.  I don’t know if there are words to truly convey how much it means to feel the arms of a good friend give you a tight hug, remind you how to laugh, share in your pain.


This past weekend, I got away with a few of these girls for a girls trip.

I was only able to stay for a day and half since I couldn’t leave Evan for more than that…my heart wasn’t ready to.

But, I knew I needed it.  I needed a break.  They knew I needed a break.  We all needed a break.

We escaped to one of their lake houses about 2 hours away from the city.

We had a weekend planned of shopping at a large outdoor market, cocktails, anything was going to be awesome – we were kid free! Ha!

We talked, we laughed, we cried – ok I cried – a lot, we shared details of our life – the good, the bad, the ugly.

There is something about mojitos, chips and dip, music, a liter of wine, smores, and shopping that is extremely therapeutic.

Laughter is inevitable when you’re running away from tracker jackers, learning how to canoe, blowing up floaties, floating on rockets, sweating in the Texas heat while trying to bargain.

I shared with them details of Evan’s journey that I hadn’t shared with anyone but Craig.  I cried in front of them – the tears falling and not stopping – a release that I didn’t realize I needed.  Normally, these tears are saved in the comforts of my living room, staring at Evan as he sleeps, in the middle of day when Iz is at school, and Craig is at work.  Because these tears are sacred to me, they are tears that come from deep down in my soul – tears of pleading to God to heal him, tears accompanied with thoughts spoken out loud – “I can’t lose you.  I need you to be ok.  I will do whatever it takes to get you well.  I need you here – forever.”  The words I often write about, words I say in my head, but never out loud unless I’m alone with Evan – stroking his chubby cheeks, kiss his thunder thighs.

But, there’s something about good girl friends, late nights, and 4 glasses of wine – that really allow you to let go.  And I did.  I’m sure it made them uncomfortable – I mean – ugly crying is always a little awkward – even if it’s fueled by an adult beverage.  But, they listened.  They cried with me.  They said they’d be there for me no matter what.

And then, someone fell over – everybody in the lake house getting tipsy (sing to the tune of “Everybody in the club gettin’ tipsy”) – and we laughed.  The moment over but cut with some joy and big, belly laughter.


This weekend I found a little bit of me that I didn’t know existed anymore.  The part of me that can just laugh just to laugh.  The part of me that remembers what it’s like to have some normal.  The part of me that remembers it’s ok to be normal and not feel like I have to be in a funk, in a rut, in a constant state of breaking down just because our lives surround a broken heart and a daily need to find a solution to our new normal.

Thanks, friends.

Can’t wait to get back…

*I’ll add pictures soon…have to sift through which ones are appropriate for the internet…*