Not the Woman

I’m not the woman I once was.
That thought keeps gnawing at me.
Chewing at my heart.
Chomping on my self esteem.
Cracking my smiling exterior.

I feel fake.  Faking that former me.
I want to laugh.  I want to say, “Fine!” when everyone asks how I am doing.
I am used to shrugging when people ask me how I do it all.  I have the routine memorized…
Shrug. “You just do.” Smile. “We are very blessed.”
We are very blessed…. that part hasn’t changed. 

Just me. 

I feel like I am clawing my way out.  Nails scraping on the side of the walls.  Refusing to slide down. 

I’ve been unable to do it all myself.  And it sucks. People offer to help… but so often they really don’t know what to do.  I mean… they can’t come and stay up late at night for me.  Take away my mother’s worry.  Replace me at a doctor’s appointment.  Replace my attendance to the twins.  And I don’t want them to do that.

I might have figured out a way to relieve some of the stress.  But, I’ve had to ask for help.  And it sucks.

Not only that – but I’ve had to be very frank about Alexander’s medical needs.  Our familial needs.  When you list them out… WOW – reality check.

I hate to list that list.  Because that list is depression.  That list is pessimism.  That list is darkness. 
And right now – that list is our best chance.  At hope.  At optimism. At light. 

So… I’ve jumped into the well – feet first.  I had to jump.  To save myself.  I had to jump into that dark place.  And … now – I’m clawing out.  Hope by bit of hope.  Until that sunlight shines on my face again.  And I can be that girl I’m pretending to be.

The one who smiles and says, “No worries.”  “We’re amazing.”

Because the truth is – most of the time – we are amazing.  The rest of the time, I don’t dwell on it. 

It’s just that stupid list.  That list of all the things that are not “perfect.” … or even close. 

*Sigh* …

When the Perfectionist Fails

Is there a time when I get to be “perfect” again?

I am a true perfectionist… even about the silliest stuff.

Even with school – yes… I believe there is such thing as the “perfect” lesson. And – in my version of “perfect” – you work hard… then harder…. then even harder – until things are the best they will ever get.  That no one could have worked harder than you me.  No one could have made it better than you me.  Perfection.

I really wanted to write something light and fluffy.  Fun pictures of the kids and Ray and I at the parade.  We were going to bake chocolate chip cookies tonight.  We had it all planned out.  Relax.  Breathe.  Exhale.  Smile.

Last week Alexander had an evening of screaming all night long.  I went to work on 2 hours of sleep.  The next day, I had him into the doctors – to recheck his ears.  Because we were that on top of things.  We were preemptive.  We did everything right.  Turns out – he did still have an ear infection.  Turns out… he did need more antibiotics.  *Cue back patting here.  Great Job Kristen…. Way to go – figure it out. Fix it.  Don’t let things get out of control. *

Today Alexander had another seizure.  Despite all of it.  Despite the doctor visit.  Despite the early detection of the ear infection.  What about the “perfection” of it all?  I worked harder than anyone.  We did everything right.

Alexander’s seizure was the biggest yet.  Lasting the longest.  The most uncontrolled ever.
15 mg of Valium
100 mg IV Keppra
100 mg IV phosphenotoine
3 doses (don’t know the MG rate here) of some other “V” medicine
3 doses of Ativan. 
I believe there are some other drugs that I missed. 
I was too busy trying to overhear the conversations:
Phenobarbital / Valpuric Acid / Intubate / PICU / Spinal Tap / Meningitis …. shit.

I know you are all going to say that no one is perfect.  I know you are going to tell me to stop beating myself up about this.  But.  I. Am. His. Mom.  (As of right now… he is not intubated nor has he had a spinal tap…yet.)

How can I recognize and help so many other people… but not be perfect enough for my little buddy? 
(who… by the way … is PERFECT.)  I just feel like I’ve screwed it up somehow again.  No cookies for the twins.  So many drugs given to this little boy… and – nothing I could do to stop it.  This little fighter boy. 

Ugh. Tomorrow… I promise to blog a happy blog. Today, I need to sleep somehow.  And sleep will come after I’ve emptied my heart of this blurred vision of perfection.  Thanks for listening.

Didn’t You Know I Love You Too?

In case you haven’t been following along… Here’s what we’ve been up to the last week or so…
seizure
hospital
fights with doctors
blah blah blah
home
love
back to normal
blah blah blah.
family time
awesome students
fun lessons
blah blah blah
Got it? That’s pretty much it in a nutshell. (Throw in a few shin splints and barely runs)

But that is not what is on my heart.  My heart has been focused on what I saw last week. 

The look in my son’s eyes.  The look in Andrew’s eyes.

Andrew has been a wreck this past week.  He’s kicked something or someone every day…. repeatedly.  He’s acted out, he’s back talked, he’s hit, and he’s bullied.  He has taken the most simple activities and turned them into show downs between us.  He will defy me just to defy me.  If I say, “let’s go take a bath,” he refuses; but If I say, “fine. We won’t take a bath,” he will run to the tub instead.


It isn’t Andrew.  It isn’t his fault.  This post isn’t really about him lashing out.

It is about the fruition of my “Mommy Gut Fears.” 

I knew this day would come, I just prayed it would take longer to get here.  I knew the day would arrive when the twins would put together Alexander and our absences.  It happened last week.  I saw it on Andrew’s face when I walked out of the store and Alexander was having a seizure.  From there, our ‘emergency routine’ was enacted.  An aunt was called.  The twins were taken care of.  They spent the night away from us.  They didn’t return to us for many days.

He put it together.  He always was a bright kid…

What am I to do now?  Now that he knows… in the way that a three – year – old “knows?”  That Alexander has needs and sometimes those needs get put first.  *sigh*

He doesn’t understand the difference between life threatening needs and normal life “wants.”  He shouldn’t be expected to.  He is 3.  But… it doesn’t stop the fact that he feels…  (so many words come here that I can’t even begin to write them all.)

I wonder if a person can’t understand the true magnitude of a mother’s love until you have children yourself?  But really….
I wonder if a person can’t fully understand until they’ve had more than one child? Please allow me to explain – I’m not trying to minimize the motherly feelings of anyone who has one child.

I remember when a good friend of mine was pregnant.  She was already a mother and … in love with her daughter.  I remember asking her if she worried that she would love this baby as much as her daughter.  She said, “I know I will… but I honestly don’t know how I will.” 

She wasn’t alone.  When I was pregnant with Alexander, even though I had two children already, I remember thinking… “I know I will love this child beyond belief, but how will that be possible when I already love the twins so much?”

Truth.  I love them all.  Heart achingly so.  Breath Takingly so.  Equally.  Completely the same.  And Completely different.

I can’t explain it to anyone.  I think the only way to truly understand it may be to live it. 

Dear Andrew,
Please understand that I love you more than words could ever express.  I would lay down my life for you.  I would move mountains for you.  Please don’t question my love for you.  Please let me cuddle you.  Please let me kiss away your tears.  Please do not turn to anyone else.  Please know in your heart… let me prove to you that I love you as much.


Dear Addison,
You are such a blessing.  Please know that I love you also.  For your feisty spirit and your amazing heart.  I love the way you say “Alay- zan – der.”  I love that you say, “where’s Andrew?” about 100 times a day.  Please remember that I would travel to the end of the Earth for you, my baby girl.  Please allow me to continue to prove to you that you matter too.


Dear Alexander,
Please don’t feel left out.  I’m so torn.  I need to cuddle them a little extra right now because they are hurting.  Please know that this is completely on my shoulders.  Please remember that I love you.  You are a blessing to all of us.  Your brother and sister are proud of you.  They love you.  They have a bit of 3 year old jealousy, but this is to be expected.  Just know that needing help is never something you should be ashamed of.

My post of my heart is also my most difficult aspect of parenting right now.  How can I convince all my children that I love them equally?  It really does seem like a foreign concept… that you can love so many people so much – but … I do. 

Thanks Shell…. For letting me Pour My Heart Out

I'm linking up with Mama Kat too... I know it's sort of cheating - but it was her writing prompt that gave me some clarity on this situation.

For those of you who have been following… I wonder what you think.

 What do you think when you put snippets of our life together?  I’ve been wondering this … because – I use my home Facebook page to keep people updated on our life.  The blog is more of an outlet, so sometimes I forget to update it when we are home or doing things.  I try not to exploit … but yet sometimes to explain.


I’ve also been thinking about other things… to do with the blog – but more on that next week.  For now, I would like to really tell you about the last few days.  In sequence, not by these random snippets as my emotions brim until they spill over the edge and onto the page.


Alexander had a seizure. Hmmmm… how many posts have started this way?





Anyway… Have you ever had one of those “perfect” days?  In class, I was completely fulfilled.  It was a day where my students and I connected.  Where I could see them excited to learn … and they didn’t even realize how many cool things they were learning.  And AMAZING teaching day.






Then I came home and ran my THIRD run!  WooHoo!  I actually remember enjoying the run.  I daydreamed.  I mentally blogged about the ideas that floated around in my head.  Step. Work Harder. Step. Give More than we Take. Step. Love my Family. Step. Enjoy the Quiet. Step. Embrace the Noise. Step. Slow Down. Step. Baby Boy. Step. Respect my Husband. Step. Kiss my kids… and on and on.

With each pounding of the pavement I could feel the stress release from my shoulders as I pushed aside the needs of everyone else and enjoyed the desires of my heart.


When I finally made it back for dinner, it was to smiling kids as we planned for our evening’s adventures.  My Grandma turned 83 and we were headed to an impromptu cake and ice cream party.  The kids were so excited.  I was excited too because Ray said I should get some real shoes before I gave myself shin splints.  Seriously… the shoe situation was pretty bad.




I ran into the shoe store.  Quick and simple.  … Quick and simple.  It should have been quick and simple.  Honestly – it is when everyone has their guard down that things seem to go awry. 

I came out and I could tell something was wrong.  Ray had Alexander out of his car seat.  When I looked in I could see.  Questions on the twins face.  Fake smiles on Ray’s lips.  He said, “I think he’s having a seizure. But it doesn’t look right.”  He was right.  Instead of the normal seizure – this one was only on Alexander’s left side.  His right side was completely responsive and alert.  We weren’t able to do anything in a parking lot – so we administered relief Diastat and loaded up to try to get to the house as fast as possible.  I sat timing Alexander’s seizure while we rode.  I called the Neurologist and we discussed our options once we got home.  Alexander’s seizure did break for a few minutes – but a new problem immerged.  He didn’t seem to have use of his left side.  His arm hung limp and his leg was in an odd position.  Everyone was thinking the same thing… stroke.

What a horrible thing to happen to someone so small.  We are making such progress! A stroke would just place more obstacles… not take them away. 

The ambulance was en-route – as was the helicopter – to take some of us to Hershey.  When the helicopter arrived we were greeted by 2 people.  One…inspired THIS POST about his behavior.    It was the closest I’ve ever been to calling someone “out” on the internet.  I was so angry as I drove to Hershey… so worried.  About my baby.

A CAT scan showed no stroke occurred.  Blood work was drawn.  Because Alexander has small veins, an arterial stick was used.  Not only is it incredibly dangerous, but it is also incredibly painful.  Alexander screamed as they drew this blood. 



Finally, with his seizures seemingly broken, we were admitted for observation because this last one was so different.  I once again – I convinced the doctors to allow me to watch him all night in order for us to have a private room.  Facebook became my friend.  My blog became my outlet.  The minute I released my anger over that insensitive EMT… my heart was open for the prayers that were offered up. 

I then posted the 3am reflection.  The smile of peace on a night changed in the blink of an eye.  Because isn’t life just a series of turns?  That happen in the blink of an eye? 

This morning, life returned to normal.  We were given an increase in medicine and discharge orders. 

So now what?   What do you do when you return home?  Your emotions so raw from the night’s activities and lack of sleep…

I called the EMT service.  I filed a formal complaint.  I told the director that it was irresponsible for that EMT to leave with my child and not all his medical history.  For my child to be unaccompanied for almost 2 hours without medical instructions.  I told the director that it was immoral for that EMT to take my child without even a hug or kiss goodbye.  Nothing. 

As I made this call… there was another realization that sat in just as deep.  That EMT may once again be in charge of my son’s life.  Am I making a mistake? 


I must push those fears aside for what is RIGHT.  I must help us return to normal. 
Twins and I play outside.
I try on my running shoes.
I Love my children.  All of them. 

So…. last night, when I returned home – I made the choice to continue with our IPad competition.  And trust me… competition is fierce.   I wondered if it was too much … to ask for prayers and then ask for votes.  And, I decided that we would either: say we were returning to life as normal and then do it… or we wouldn’t. 

I choose to do it.  However…. we have been very blessed by your prayers – which were necessary – those are what are important.  Above all else – the value of those relationships.  I wrote about that HERE.  I am writing this here in case you were following on Facebook or somewhere else and wonder, “how do they just go back? and pick up life like nothing happened?"  Because we have to.


We are still competing for the IPad.  - If you feel like voting for Alexander… he’s at the bottom… the cowboy. If you want to vote for another kid – that is cool too:  All the kids would benefit. We are personal friends with the Little Engine that Could and Super Girl.  We are internet friends with all of them.  And… the prisoner has been locked up for 24 years.  VOTE HERE


If you feel like sharing the link – share away. 
Down’s Syndrome is 1:600.  Alexander’s Syndrome is 1:50,000.  Spreading a little awareness goes a long way.



And now… I can feel relief.  We’ve helped raise awareness for Alexander’s syndrome, thanked everyone for their prayers and support, and explained all those “snippets” of life through my blog outlet. 



Thanks Shell.  You always deliver. 

I’m Not Going to Play Nice

I’m tired.
I’m tired of always waiting to post until I can see “what lesson can be learned.”
I’m tired of always trying to put things into perspective.
I’m not going to play nice tonight.

Mr. EMT.
Yeah – you.  The one who had control over my son’s life.  The one who came into the ambulance.  The one who told me I couldn’t ride in the helicopter again.
YOU SUCK.

Mr. EMT.
Yeah – I’m still talking to you.  The one who think’s he’s God.  You are NOT.  I know what my child needs.  I know how my child acts.  I know my child.  You just met us.  Take a minute and listen to me.
YOU SUCK.

Mr. EMT.
Yeah – I’m not done yet.  I was still talking to you when you took my baby away.  How did that make you feel?  Powerful?  In control?  Did you know I was rendered speechless?  Did you realize I was still explaining what Alexander would look like when he came out of a seizure?  I guess you didn’t hear my request for the E.R. to call when my baby arrived…. because they never got it.  You were probably too busy walking away from me.  You never even let me say goodbye.  You just turned – in the middle of my descriptions of Alexander – and walked away. 
YOU SUCK

Was it that terrible to hear a mom ask to ride in the helicopter?  Did you feel you needed to teach me a lesson?  Or did you just not want to hear my request?  Did you decide I wasn’t worth it?  Alexander wasn’t worth it?  What would have happened if you didn’t recognize his seizure?  What if something happened to him because you didn’t know about his: seizures, non reactive pupil due to a cataract, low muscle tone, mickey-button, small veins, blue hands/feet that are normal, etc.  Those are things you should know before you take him away.  You didn’t even know what medicine he needs to break a seizure.  And… thanks to you – neither did the ER. Did you know that I got to drive an hour and a half with that knowledge?  Does it bother you?

No. This isn’t a nice post that ends with … Well – everything happens for a reason at the end. 
I don’t care.
Maybe tomorrow – in the morning – I will have a different opinion of you … Mr. EMT.
I’ve never written something really bad about someone on my blog. But this is real life.

I can deal with the seizures.  I can deal with it all.  Because Alexander takes it all in stride.  I can learn from my son to be content with what I have and love people mercilessly.

But… Mr. EMT – you need to remember that every “case” you have – is or was someone’s baby.  Someone has entrusted you with a loved one.  Tread carefully…. because a little compassion can go a long way.

Thanks for all the prayers.  Alexander is amazing. He is strong and sleeping in the bed.  We are pulling an all nighter’.  Thanks for letting me be a little “real” on the blog.  So often I wait until my emotions don’t write the post – but tonight… I just had to get something out.

Going to BlogHer Writer’s Conference

Oh the places we will go.

And the guilt that follows along.

I shouldn't be going to this conference.


The twins both have low-grade fevers. Alexander's probably going to get sick. The twins are having a big birthday party on Saturday. I just turned on the van and there is a warning light that popped up.  There is the very real possibility that I could leave Ray stranded with three children and no car. I feel selfish. 

But I can't stop myself. I really want to go. I really want to know if I'm any good. I really want to know if my blog could be a book. Or maybe I could write an inspirational book with all this pictures of the letters to my students. I can see it now… they laugh me out the door - I don't even know what book I want to write.


I don't have an elevator pitch done. I feel like a kid who signed up for the general class and got put in the AP course. I'm so over my head I have no plans, no pitches, etc.  I got my hair done.






That's what I’ve done to prepare for this blogger conference… got a new hairstyle.







I hope people don't laugh at me. I just want to know if I am any good.

Sometimes I tell my kids be careful chasing a rabbit down wormhole. I don't know if you understand what I mean… but - sometimes people get so sidetracked that they can't see the full picture. They end up going down a path they never intended to go down. And they spend hours upon hours chasing this rabbit – only to end up nowhere. I wonder if I'm chasing rabbit. If I should be focusing my energy on other things. I wonder if I'm making a mistake with this blog. A friend told me I should take a 90 day break from my blog and do P 90 X. (and get healthy…) Because I don't have time to do them both. 

I feel like my life is about “not enough time.”

Remember the hypothetical story?  Of the hypothetical anniversary that was almost ruined?  Well… this trip prompted the hypothetical fixing of that problem.  

                   

Here’s why I didn’t do it before… Ugh. The only thing that is the same is – I am still an organ donor.  Otherwise… I’ve transformed – from a hip twenty something girl – to a mom. *sigh*

That is the extent of my preparations for the conference.  Oh – and I picked up a car charger for my new IPhone.  They are going to laugh me all the way home.

Who will Love me for me?

This song is my song. This song is the song of my heart, my children, my students…


Here is the song.  You can find the lyrics at the bottom of the page, but for now – I’m going to explain how this song has become the song of my soul.

I believe in “late in life” marriage.  If asked honestly – I would tell you that I am fairly against teen marriage.  I would encourage people to sew a couple of wild oats and give themselves a chance to mature before settling down.  A teenager changes so much into early adulthood.  The process of maturing and “finding your real self” should be crossed without boundaries.  And then… when you know who you are – find someone who will Love You for You. 


What happens when a huge life changing even happens late in life?  What happens when your life is thrown off the tracks and your entire person changes?  Your priorities shift?  Your needs shift?  What is you were one person and… suddenly became someone else?  I’m thankful that Ray is along for the ride, but I can’t help but empathize with a man who married one woman and ended up married to someone else.  The birth of Alexander has sort of changed everything.  It changed me.  It has opened my heart to other priorities.  It has opened our lives in this blog.  Ray is a private man.  I am blogging our lives away.  Who will love me for me? The answer is still Ray – but the question is who am I?  Every time I think I know… the winds shift, another opportunity arises or drifts away, and me is different.  It would be so much easier if me was the old me.   Who am I now?  and then… Who will still love me for me?  Not for what I have done or who I will become?

This is the song of my children also.  Alexander… who has his own needs.  Who will love him for him?  Not for what he has done or what he will become?
Andrew… who is a “twin” and a year older than Alexander.  Who will see him for him?  Not for what he has done or what he will become….
Addison… the other half of Andrew.  The other “twin.”  Who will see her for her?  Not for what she has done or what she will become…

I believe this is the song of every mother to their children.  You worry… You want people to love your children for all those beautiful qualities that make them unique.  You want people to see them as individuals.  You want people to see your children for them…. Not for what they’ve become or what they will become.

And finally … this is my song for my students.  Here is the letter I wrote to them this week.

You don’t need to date someone to be someone.  Your qualities are not based on other’s perceptions of you.  Be yourself.  Give people a chance to love you for you… not for what you have done or who you will become…

I love that at the end of the song J.J.Heller reminds us that no matter what – God will love us for ourselves.  A beautiful message.
Here are the lyrics….
He cries in the corner where nobody sees
He’s the kid with the story no one would believe
He prays every night, “Dear God won’t you please…
Could you send someone here who will love me?”
Who will love me for me
Not for what I have done or what I will become
Who will love me for me
‘Cause nobody has shown me what love
What love really means, what love really means

Her office is shrinking a little each day
She’s the woman whose husband has run away
She’ll go to the gym after working today
Maybe if she was thinner then he would’ve stayed
And she says…
Who’ll love me for me?
Not for what I have done or what I will become
Who will love me for me?

‘Cause nobody has shown me what love
What love really means, what love really means
He’s waiting to die as he sits all alone
He’s a man in a cell who regrets what he’s done
He utters a cry from the depths of his soul
“Oh Lord, forgive me, I want to go home”
Then he heard a voice somewhere deep inside
And it said, “I know you’ve murdered
And I know you’ve lied
And I have watched you suffer all of your life
And now that you’ll listen, I’ll tell you that I…”
I will love you for you
Not for what you have done or what you will become
I will love you for you
 
So what do you think of the song?  What is the “Song of your life?”  This was the question asked by Mama Kat.

The Unexpected Pregnancy

I heard the news today.  I don’t know how to tell you, because I don’t want you to think people are talking about you.  They are not… I was only told because, well, I would understand.  And I’m going to put this on my blog in hopes that God will lead it to the right people.

My heart breaks for yours.  As you carry this unborn baby from doctor to doctor, I know your heart breaks as well.   I know what those long days at specialists feels like.  I know what it feels like when your hope is chipped away with each new test, result, or consultation.  I know what it feels like to have that guilt weigh on your shoulders.

If you asked me a thousand times – 999 times - I would tell you, “it is not my fault.”  But that one time, when my guard was down, I would confess that I feel guilt over Alexander’s diagnosis.  I wasn’t taking prenatal vitamins.  I wasn’t doing the things I should have been doing.  I wasn’t prepared.  I ate the wrong things.  I was so “confident” because… babies are born healthy all the time. 

I should have known.  I should have done something differently.  I’m his mom.  I’m … his … mom… I just shouldn’t have allowed this to happen.  Those are the secrets of my heart.

What you feel it completely normal.  The waiting is so difficult.  Specialists can only tell you so much – and until you’ve held that precious baby in your arms… the bonding is not quite the same.  In time – we both will come to believe what our heads already know… there was nothing we did that could have changed this outcome.  God’s hand directs things in motion… for a purpose we are not always meant to understand.

Everyone must make their own choices; I’ve been told you are not going to terminate, and I can tell you that is a choice you will not regret.  Those specialists don’t know what a child can do.  Those specialists don’t know what God can do. 

We were told to allow Alexander to pass.  We were told he would never eat.  We were told he would not know us.  We were told children with his syndrome don’t walk or talk.  All of those things are false. 
So what if your unborn baby doesn’t cure cancer?  He probably wasn’t going to bring world peace anyway.  I can’t count the number of people Alexander has brought closer to God.  What if that is his purpose?  What if that has secured his place in heaven?  And the first shall be last and the last shall be first…

As I write you this letter, Alexander is crying.  He’s tired of the EEG wrap on his head and he wants to fall asleep.  Yet I tell you this, I would not have changed a thing.  He is beautiful in every way.  He has fulfilled my final dream to be his mother… just as I was meant to be.

I know this video has been shown before – but … I need for you to see it.  It is the life that has chosen me.  At some point, turning things over to God will bring peace to your heart.

Please know that I am here.  Feel free to read anything you want.  Feel free to come to me at any time.  I am always here. 
I wrote this letter in hopes that it reaches a specific person… but the truth is, so many mothers carry the burden of wondering if their unborn child will be ok.  Please feel free to repost this as you see fit… in the hopes it reaches all the people who need to read it.

I'm linking with Shell for the same reason....

In my New Normal

I’ve started to follow this blog – Finding My New Normal.  I love how she writes and how open she is about her journey of dealing with her own demons. I had a rough weekend and was really worried writer’s block would keep me from writing anything worthwhile after my Big Post.  It turns out… I just needed a few moments to allow my “new normal” to unfold.

In my “new normal,” my life has some extra worries.  Thankfully, after I blog my fears away… they usually stay away.  My big fear has left. (pretty much.)  The other miracles that were laying on my heart have once again shown their strength and resilience.  One endured open heart surgery at age 4.  And. is. home. Our friends have been sick, battling seizures, and worrying about the consequences of the seizures.  In my “new normal,” these things weigh on my heart and follow me into my dreams.  But as good health returns to the members of our Wolf Hirschhorn family, my fears subside. 

In my “new normal” – those fears that remain… I try to write about in the hopes of blogging them away.  I found myself writing this post yesterday and then walking away from it.  Today was our first day back to school… and several students from last year asked me about Alexander.  I found myself repeating the same mantra I tried to instill in them all last year.  You can let life’s circumstances define you… capture you… bring you down.  Or you can rise above them… live out loud in spite of life’s circumstances … live out loud because of life’s circumstances.
 

As I found myself repeating those positive words all day, I remembered the healing power of the innocence of the young.  I found myself smiling, pushing those fears away, remembering why I love my job.  I knew I needed to come home and re-word this post. 

In my “new normal,” I rage against seizures, wrestle with my weight, worry about the amount of stimulation Alexander will get in a house without the twins, and try to be all things to all people.  In my “new normal,” I am learning that I cannot be all things to all people.  Just today, I forgot to order Alexander’s Prevacid (he is out of refills) and we almost broke his pump.  I was mentally preparing to get up every  1/2 hour to give Alexander his formula manually. (Pump is fixed… no worries there.) But, I am making lists to call the doctor and pharmacist tomorrow.  In my “new normal,” I have to remember to manage my time, find a space for me, be a positive influence for students, and remember that my family is a priority.

In my “new normal,” we celebrate the first back to school with an evening at the park.

He is so stinkin’ proud…. Just look at his face.  That expression says, “I’m cool, Mom.”

We rejoice in new tricks and old treasures found in – just being outside.

In my “new normal,” – we cherish our moments with our friends..

Yes… Andrew has a new girlfriend.  He asks about her almost every day….

In our “new normal,” we still get excited by small milestones that are met.  Alexander… riding in a cart – like a big boy. 

The stress will come.  I may launch myself over desks to answer a phone and feel pure RELIEF when it is not about Alexander.  I may forget to order medicines or schedule doctor’s appointments or even enter a grade.  I could dwell on the fact that I have a new normal… or I could embrace it.  I can chose to live. out. loud.  I can chose to dance in the rain.  I can chose to live the “life” I preach to my students.  I’m choosing it, baby. I’m choosing it.

I actually "cheated."  I wrote this post of my heart on Monday night, but - it is the follow - up to my last week's PYHO.  The post spiked at over 600 reads... I felt I should follow up with the I'm ok... in spite of fears post. 

Letter to the Mothers who live my deepest fear

Just answer me one question, how do you go on?

If I would have been asked two years ago what my greatest fear was, I would have said, “Having an unhealthy baby.”  When you are pregnant these are the fears that occupy your mind.  When that fear was realized, I found a way to go on.  I knew it was not the end, but only the beginning of a new journey.  I knew… it wasn’t really my greatest fear.  I survived that fear… but I still have one left.


It is so crippling, that sometimes I struggle to breathe.  It consumes my thoughts at least once a day.  How do you endure the death of a child? 

This past two weeks, two beautiful people with the same syndrome as Alexander have passed on to Heaven.  I write those words from my head.  My head tells me that they are running free of all physical restrictions and are awaiting the arrival of their family in Heaven.  My faith tells my head that truth. 

But my heart won’t listen.  My heart brakes for the families of those children.  My heart rages at the syndrome that leaves so many fears.  My heart … crumbles into a million pieces as I admit my deep dark secret.  I am not as strong as I seem.  I do not know how those mothers go on.  I do not know if I would be able. 

In our small church, there are several mothers who have buried their children.  On Sunday, I sat and looked around, and my thoughts drifted to the parents – connected – to – me – through – genetics… I quietly wept.  Will I someday find myself amongst those ranks?  Who even thinks these thoughts?  Will I alienate myself because I have this fear?  Because I’ve aired it out loud?  How can I bury this fear?  Will I push myself further away from my friends who already don’t quite know what to say to me?

** My good friend (whom I ran this post by before publishing it) asked me WHY I am so scared right now.  I started to write it in this post, but erased it because it seemed too wordy.  Not only has our small community lost several beloved people lately, but other, more personal things have happened.
When I was pregnant with Alexander, we attempted to buy a bigger – 2 story – house.  Our attempts were not realized and I remember asking one of my closest confidants, “What if God is making sure we don’t sell our house because something is wrong with the baby?  What if he wants us to stay here because he knows we won’t be able to handle the stress of a bigger mortgage?”
Fast forward – we did not buy a bigger house.  That fear was realized.
A few weeks ago, there was an opportunity for us to possibly, again, attempt to get a bigger house for our family.  A larger house would also bring a larger mortgage and would commit us to a 2 paycheck family.  I prayed one prayer, “God… please let the decision to move or stay be an easy one to make.”  It turned out, that prayer was answered – the decision was easy.  The offer was not what we expected .. and we are staying.  In the back of my mind – I can’t help but think, “God knows my fears.  He knows I am week and might not be able to maintain a job if something happens to Alexander.  God is taking care of us.”  And it scares me – literally into a state of debilitation. **

I’m not sleeping. I’m literally paralyzed with this fear. I hold Alexander … and beg for mercy. I think of him constantly. And, truth be told – I don’t know how I would cope if anything happened to any of my children. And my head knows that anything can happen to anyone at anytime. But my heart worries for my medically fragile child. As each child is brought to us in prayer – death, seizures, complications …. it grips my heart.


But … really … how do those mothers go on?
There. I just poured my heart out.  Shell @ Things I Can’t Say encouraged me to do it…

Effexor, Self Awareness, and Maturity saved my life

I’m going to write the post of my heart.  The post of Naomi. The post of weakness.   Because if there is one thing that I know in my heart I should do, it is speak these words.  I would much rather keep this  part hidden, but to not talk about it brings shame to something that should be shameless.  Before you read on… if you don’t know the story of Alexander’s birth in May of 2010, please read this post FIRST.  And if you continue to read – please read until the end.


This past year has been one filled with fears.  Fears for my family, fears for my son, and fears for others.  Because I have seen a glimpse into the hell that is depression.  I’m not talking about feeling a little blue.  I’m not talking about having a bad day.  I’m talking about the life-is-over-darkness – depression.  The truth is, Effexor, Self Awareness, and Maturity saved my life.  (God… is – as always – present.) But this post isn’t going to focus on that part of my journey.  Many God loving people experience depression.  And. No. One. Talks. About. It.

Do you want to know what it feels like?

Imagine the most heartbreaking moment you can remember.  Picture yourself crying that ugly cry.  Remember the clutching of your heart as fingers squeeze it until your chest hurts.  You can’t breathe.  Every breath is labored and you struggle just to exist.  Your head hurts as you replay hurtful words, broken dreams, actions that cannot be undone, and the what – if’s that won’t go away.  And there is no relief.  None. You blink your eyes… still all that pain. You fall asleep… still all that pain.  Each day, each moment.. you beg for mercy… and … still all that pain.

I prayed. And… honestly, there was no relief.  I really believe that was so I could write this post.  So that one year later – I could stand proud and tell others what it looks and feels like.

I have always liked to nap.  I love to nap in the living room, with the sun beating down on my face.  Last summer, I slept almost all the time in the darkness of my room.  I pulled all the blinds.  I turned off all the lights.  I slept all the time… In the darkness that mirrored my heart.

I did not return phone calls.  I didn’t talk to people.  In fact – Ray and I sent out an e-mail specifically asking people not to contact us.  He has always been a private person, but I have always been an open and public person.  Many of my closest friends sent me congratulations on the birth of “Nicholas” because they thought that was going to be his name.  I couldn’t even tell people his name.  I just didn’t have the energy to speak to anyone.

I know I have alluded to it in the past… but I really did not do anything to provide for my family during this time.  I did not cook, clean, do laundry, tuck my children in, cuddle them, give them a bath, play with them, … I didn’t even eat supper with my family.  And it’s not because no one noticed.  Ray did everything possible to get me to at least eat.  I couldn’t.

I was once asked by a doctor’s office if I thought about taking my own life.  My automatic answer was, “No.”  My mental response was, “How could I leave Ray to deal with our life alone?”  The doctor was satisfied because of my automatic “no.”  He couldn’t read my thoughts.  I could have walked out of that office and he would have been satisfied.  But you and I know my mental thoughts were not appropriate.  If I really was so far from stepping off that cliff into oblivion – I would have thought, “No! I have too much to live for.” 

Maturity and self awareness saved my life. I asked that doctor for help.  I told that doctor that I needed something to help me battle the darkness. 

If I would not have known the signs of depression AND been mature enough to know I was “faking” normalcy – I might not have been able to write this post.

So why share it?  Why write this?  Why expose something so personal?  Because I worry about other people.  Especially today’s youth.  I feel like most of you are thinking, “well, she gave birth to her son; she heard he was not going to survive or have any quality of life. She battled this tough road… no wonder she was depressed.”  And that might be true. But what about all of those other people who experience depression just because they experience it?  What if no one notices?  What if that person can’t ask for help? What if they don’t recognize the signs or aren’t mature enough to stop lying. To others or themselves.  How can my experience be used in a positive way? 

I am not ashamed to say that an anti-depressant saved my life.  Does it make me less of a person? Does it make me weak?  Did it make me a Naomi?  Maybe.  Does owning it – Out. Loud. – make me a Ruth? I think so. 

I always wanted to be a Ruth.


I decided to publish this post today because…
1. I just needed to get it out.
2. I have a lot to do tomorrow…
3.  I would like to reach as many people as possible with this post, so I linked up with Pour Your Hear Out Wednesday. 

Crap, I’m Naomi

There are only 2 books in the Bible named after women, Ruth and Esther.  There are less than 200 named women discussed in the Bible.  Much of this is a cultural phenomenon; women weren’t considered equal during biblical times.  So when a woman is mentioned, by name, in the Bible – we should pay attention to the words surrounding her.  There is a reason this woman was held to such a high standard to make it into God’s Word.


The book of Ruth was a favorite of my childhood Sunday School teacher.  We did several Bible studies on that book, but the eyes of a child sees things differently than the eyes of an adult.  As a child, I was a would-be-Ruth.  I would stand beside what was morally correct.  I would walk away from what I knew.  I would support the Naomis in my life.  I would eventually find my Boaz.  Ruth … her strength was what I envisioned myself holding.

Naomi – she was a broken woman.  How could someone give up on life?  Yes, life had dealt her hardships, but she just crumpled.  Naomi was weak.  Naomi was only in the Bible to help accentuate how strong Ruth was.  I would never be Naomi.

15 years later, I became Naomi.  Honestly, Ray became my Ruth. (yes… I know that Ruth is a woman and Ray is a man). But, before we dated, Ray barely went to church.  Our relationship also built his relationship with God.  When the chips crumpled at my feet and I was left with dreams unfilled – Raymond became the strength that held me up.  Ray provided for me when I could not provide for myself.  Raymond did not give up on God.  Raymond made sure we went to church every Sunday, when I could have skipped. 

In the book of Ruth – Chapter 1: 20-21 it says “Don’t call me Naomi,” she told them.  “Call me Mara, because the Almighty has made my life very bitter.  I went away full, but the Lord has brought me back empty.  Why call me Naomi?  The Lord has afflicted me; the Almighty has brought misfortune upon me.”

I will tell you this.  Those words could have come from my mouth.  Last summer, I specifically remember telling people, “Don’t say God has a plan.”  “Don’t tell me everything happens for a reason.”  I was a bitter person and angry at God.  All these dreams of being a strong Ruth were gone, and left in the wake was Naomi.  Raymond did whatever it took to make sure our family survived.  Raymond became a pillar of strength when I could not be.

I’m sharing this post because I’m going to write about that time… the summer of 2010.  As I write about my feelings, emotions, and actions – I really struggled with what to share.  Then I went to bible study.  The topic? Ruth.  I was excited to discuss this book I already knew so much about.  I was excited to offer my insights into Ruth.  Do you know who I had insight into?  Naomi. 

It was as if God was leading my heart to this point.  It is ok to share your story.  Naomi was not just a supporting character in Ruth’s journey.  Many more people can identify with Naomi than with Ruth.  Trust your heart.  Share your modern day reenactment of Naomi’s broken spirit.

So I will.  And I will link it back here so we can remember – God values all feelings: Strength and Weakness.

Tomorrow… the post of my heart.