Pieces of me.

I had dinner with my friends last week.

These ladies have seen me through some of the hardest moments of the past three years.

I had a breakdown a few weeks ago that landed me in the hospital with a diagnosis of exhaustion, dehydration and an ulcer most likely caused by stress and as the ER doctor put it “an inability to cope.”

My friend said to me, “I knew something was going on.  You hadn’t blogged.  Your presence on Facebook was gone.  Something was up.”

She was is right.

Something is going on.

There are few things in this life that really get under my skin and make me angry.

Hypocrisy and a lack of authenticity are two of them.

And blogging about our journey and how “I’m going to keep the faith and have hope” and post on Facebook happy pictures about how we are “living life to the fullest” – well – those things would be hypocritical of me.

I’m not in a good place.

I hate all that we are going through.

I’m tired of putting positive spins on things.

I’m exhausted with all the “it’s just a season,” “there is so much to be thankful for,” “you’re being tested and you are stronger than all of this” – cliches.

I don’t have the smile and “I know its” to reply back to those who tell me “it could always be worse” and “look how far you’ve come.”

I’m in the proverbial pit and every time I try an hoist myself out of it – more hardships keep getting dumped on me and my family.

I used to say, “Well – all that junk that get’s put in the pit – I’ll use as stepping stones to get me out!”

Now – it just feels like all that stuff is burying me alive.

Our situation – Evan’s medical issues, Craig’s job, our finances, Iz’s separation issues, personal family issues – could be infinitely worse.

I get that.

When I think about “it could be worse” – that is my son dying. That means that most of what we are going through would be all for not.  And, those who have lost their children – they would not wish that ache and the nightmare of living their life without their little one – on any soul on this planet.

I’m not looking to have a contest about “who’s life sucks more” – because I know that everyone has demons they are running from and everyone in some capacity has or will be in their own “pit.”

So, I try my best to be thankful for each moment.  Truly, I do.

But, as my friend said to me, “It’s like you are constantly waiting for someone to pull the rug out from under you.”

Because it is. We are constantly waiting for the next blow to our spirit.  The nervous anticipation of the next set of bad news to hit us.

It started nearly 3 years ago when we got the diagnosis.

The rug was pulled out from under neath us.

I shattered in a few hundred pieces but I found a way to put myself back together.

The pieces were still manageable  and I was able to puzzle myself back to the person I could recognize.

But, as the hits kept coming and I shattered over and over again- surgery after surgery, family issues like job loss, the mountain of finances, personal issues I had to deal with – well – those pieces of me became smaller and smaller.

And I sometimes – when I put myself back together – I’d fail to pick up important pieces of who I am.  I couldn’t find the pieces of me that were the essence of the faith and the hope and the joy that used to be the biggest parts of my being.

And then Boston.  I had to pull myself together and become stronger than I knew was possible because Evan had no one but me.  While most days I felt like I would come unglued – he needed me to be the person I promised him I would be. So…I soldiered on.

You know what breaks you in million pieces?  Witnessing your child almost die.

And that has happened more times than I wish to share.

But…we had to come home.  We had to get home so our family would be whole again…and it was my hope that I would be whole again.

We got home – and I did what I do best.  I put on my “mom and wife” gear and I went to work.  I occupied our days with normal.  I blogged and I status updated the stuff that I wanted other to see.  I put on my best “it’s going to be alright” mask to hide what I was truly feeling.

And just when I thought that maybe – just maybe – I’d get a chance to enjoy the me that I had just put back together – our teams discover that one of Evan’s valve repairs hasn’t held up.

And then we are sent to a doctor to explore a possible airway issue.

And then Craig gets bad news from his job.

And then the fight with insurance to cover Evan’s medications is never ending.

And then the billing departments from the hospital sends us letters that start with, “this is a courtesy letter to inform you we are disputing the following dates with your insurance company about medical coverage” – and the dates are for the entire duration of the hospital stay for your child’s open heart surgery.

And then I get some troubling news about a family member.

And then…and then….and then…

The rug.

The rug getting pulled out from under me over and over and over again.  It’s happening so fast that I can’t even find some pieces of me – so then I find myself filling the holes and parts with things like “anger,” “fear,” “sadness.”

So, I’ve put myself together – and now I don’t recognize the person I see before me.

I’ve become such a different person that even Craig says he doesn’t recognize who I am anymore.

But, he loves me fiercely and will continue to love me because he knows I’m in here somewhere.

Oh how I wish – oh how I wish – that I was still that same person who began this journey – or at least – a person that is a better version.

The only solace I get in all of this is that I know that I’m not alone in feeling this way – although I feel isolated and almost suffocated – in all of this.

But, as I wait for the rug to be pulled from out underneath me once again – and the inevitable happens – I just hope that instead of me trying to put myself back together and me becoming worse than I am now – those around me will discover that the pieces of me that I’ve lost – the hope, the faith, the joy – were just sitting there – waiting to be a part of my being once again.

And they will glue me back together….and hold me together until those pieces that I’ve lost become a part of me once more.

*Note: To my friends reading this, you are not alone.  Sometimes seeing that you are weak is what makes you strong.  I have sought medical help to find ways to cope with the stresses of the things happening in my life.  I urge you – all of you – that are experiencing similar feelings or hopelessness to seek help.  The very least – know that you don’t have to struggle in all of this alone.  I hope I can be someone that “helps glue you back together” and holds you tight until you are whole again.*

 

 

Comments

  1. Jeremiah 29:11

  2. The pain and fear you live with is enormous. I wish I could carry some of your weight for you. We don’t even know each other but a Mother’s heartaches and worst fears are a common thread between all Moms. I see you struggling through what I can only imagine to be my worst nightmare and all I can send is love and prayers. Please know I am throwing you a rope to help hold your many pieces together until you are back in full force.

  3. Nannette says:

    My son also has charge syndrome and I can completely relate to this post! Very well put and certainly validating. Thank you so much for a much needed read.

  4. Nana Jana says:

    Oh, that horrid pit! I have been there twice before. And so, I will offer you no quick cliches. I will just say…grab the hands that reach down into that muddy pit to help you, even if you slide down and climb back up several times before you finally get out of there! Sometimes the weight on your back is too heavy and pulls you so deep that you cannot climb out alone. But there are those who can help, and time can help, and admitting you can’t go it alone can help, too. Although that candle of hope seems so faint and dim right now, remember that God won’t let that candle go out; it WILL flame bright again. Hugs, understanding, love, and prayers!

  5. I love u girl! God still has you even if it is by the tiniest of threads, He has you! I don’t know exactly the right words to say, but Moses had two people hold his hands when He couldn’t hold any longer. I pray that He will supply every need as in this place this is where God does His most phenomenal work! God I pray for the victory sooner rather than later and let Czarina know your love hasn’t changed for her not one bit. None of this is a surprise to you Father. You have a plan for her and her family’s lives. Be her strength Lord, in Jesus’ name I pray Amen!

  6. I have been following you for a while on fb. Tonight I am another mom with a daughter who also has some chronic health issues. I am a woman who would like to be one of the ones who helps hold you together with a hug while asking Jesus to give you a little more strength, grace and mercy.

  7. Thank you for sharing your heart. I cannot begin to know the pain you are going through and do not know the right words to help. Try to not be so hard on yourself…you are only human and you are doing a great job even though it may not seem like it. Ya’ll will be in my prayers and KNOW that God’s gotcha and will never let you go…

  8. People are passing around your, “I Just Want to be Mommy” post on Facebook, and I came over to have a read. I love your writing.

    I too have a medically fragile child. Get ready to hear this in a fast voice, because I always try to get it out before anyone can process anything individually. My daughter will be 7 next month. She has Rett Syndrome, which is a spontaneous genetic mutation, not catching, and not possible to pass on. A fluke. She cannot speak or use her hands or walk. She has TPN or IV nutrition in a PICC line because her digestive system has progressively shut down. All we have left is her liver and pancreas, even her gall bladder gave up on us.

    We’re basically home bound with a newly earned two hour window to get “out.”

    Now I slow down so people can process what I’m saying. What she CAN do is talk with her eyes. We have a special computer like Stephen Hawking. She is sassy, she is funny, and inside that little body is a conniving 7 year old we can’t get enough of. One raise of her eyebrow tells me more than most people can get across in a five minute conversation.

    This is the part I’ve never told most of my real life friends. I went to the hospital too. I couldn’t handle it either. Rett Syndrome is diagnosed at the average of 2 years old, and she developed “normally” for the first ten months of life. Then she just started slowing down. She didn’t start regressing until she was about 18 months old. Nobody believed what I was saying. I broke down.

    Anyway, I just wanted to say: sometimes it’s okay that life just SUCKS. It doesn’t mean I’m ungrateful or I don’t love my kids and husband.

    as I was telling her I had to move without my husband’s help to our beautiful new home, and I was humiliated at having our church ladies come clean our old home, my mom told me yesterday that I’m good at doing difficult things.

    I said, take that off my resume right now.

  9. Absolutely echoing the above!!! No cliches soothe the soul… Please let folks lift you up– and your hubby, too; near and far are those who will hold onto you. So many ((hugs)) from someone in NJ who has been in the pit… and climbed out, many times. Love ya, Momma.

  10. Kristina says:

    I’m so sorry you have to suffer through all this. I have been, and is still, in the pit myself. My second daughter died a year and a half ago, only three days old, from a severe heart defect. This year I have had two early miscarriages. I have lost three children within fifteen months. I don’t know how much more I can take. And yet there are no guarantees that it won’t happen again. This is a wonderful blog post I keep coming back to, wrestling with God as I am in this deep pit.
    http://heremembersthebarren.com/2013/02/16/wrestling-with-god-against-god/