Scars

I use to think that Liam was the only one that came out of this journey with scars. After all, he was left with a large scar on his stomach from his repair surgery at 7 days old, A scar in the middle of his chest from his broviac. I scar from the ECMO cannula's. That's just the beginning of his scars.

I never took into account my own scars. The internal ones I suffered from being separated from my baby the moment he left my body. From being interrogated right after a emergency csection because the small town hospital didn't know what he had or what it was called. From not seeing my son until he was 7 hours old, then seeing him hooked up to so many monitors. Then having him once again ripped away from me and flown 4 hours away to UCSF. Scars from having him turn blue on my the first time I help him. Scars from watching him knock on deaths door, time and time again. Then the biggest scar of all. The scar from watching my son die without realizing I was losing him until it was too late. The scars from holding my son's cold, lifeless body. That one makes me angry. I had to say goodbye to my son.

I spent so much time worrying that Liam would one day look at his scars and be ashamed of them. I worried he would be made fun of for them. I worried so much that I took every opportunity I could to build his confidence in them. Make him proud of them. All the while, I hid mine like they were something to be ashamed about. I earned every scar. I walked through what felt like the fires of hell for my son, by his side. I shouldn't hide away from them. The ones that need to be treated, should be treated, but I should never feel ashamed of them.

I've been living with depression and PTSD because of what I went through with my son. It's changed me so deeply and left behind so much scar tissue that I can never be the same. Instead of pretending to be the same person I used to be because I'm afraid of what others will think, I need to embrace the new me, scar tissue and all.

Living with PTSD and depression is ugly. I hide behind a pretty smile all I want, but that only fools others and does more damage to me. The hardest part is the stigmatism surrounding PTSD. Most people think that everyone with PTSD has seen combat and is ready to blow every second. It doesn't work like that for everyone. My "freak outs" mean me in the fetal position either crying or starring at nothing, unable to function.

Employers don't want to hire anyone who had PTSD because of the stigmatism.  People look at you weird when they know you have PTSD. I've even had people physically distance themselves from me. It would come out and their eyes would grow bigger and they'd take a step back. It was hurtful. I was still me. The same person willing to lend a hand to anyone who'd ask. Someone they knew yet the title scared them. But these are my scars that I gained in this CDH journey. They tell a story. That I've walked in the fires of hell and I've survived. They remind me everyday that I survived and I will continue to survive.

Everyone has scars. Scars they hide away because they're ashamed. Just remember, they mean you survived something and that is something to be proud of. 

When The Fog Has Lifted

The last year since Liam's passing was a fog. A fog of denial, anger and pain. I kept waiting for Liam to walk through the door of his room and say "Morning", or to wake up to find this has all been a nightmare. Every morning I woke up to relive the heartbreak all over again. It's been a vicious cycle.

I did all I could to keep busy so I wouldn't just lay there crying and useless. I did what I had to to survive this past year. Including months spent hiding in bed refusing to face reality, jumping in head first at church, and even returning to the workforce. Each move I made had it's own motives and implications.... to survive.

Losing Liam shattered my soul to the point I wasn't sure I could be put back together again. I was sure even God himself couldn't find all the pieces to make me whole again. All I knew with absolution was that I loved and missed my son, that I needed him still.

When Liam was born, huge changes happened in our lives. I was so broken that I thought there was no coming back. When Liam survived CDH and came home from NICU, I quickly picked up the pieces and went into survival mode. We all went from living to just surviving. For the past 5 1/2 years all we've done is survive. We didn't even realize. Our world became focused on Liam. What was right for Liam. What we had to do to keep him healthy. Even retreating into our own bubble and shutting others out because that's what we had to do to make sure Liam survived. For us to survive, he had to survive.

I didn't know if I would survive this last year without Liam. The pain has been too great. I was for sure I would die of a broken heart long ago. I would say that I don't know how I made it, but as of yesterday, that's no longer true. For years everyone has asked me how I dealt with having a chronically ill child like Liam. I always said I wasn't sure that I just did. Sometimes I would joke and say things like "lots of coffee" or "if Liam could smile through it all then surely I could too". A few times I went as far as to state "it's what any parent would do for their child", despite the fact that I knew that it wasn't true. My mothers wouldn't have taken care of me. As it was, she gave us. If i'd been born like Liam, she would have surely walked out that hospital the first chance she got and never looked back. (And honestly I could care less at this point in my life)

While enduring everything we've gone through, I didn't have the answers, but now it seems clear as day. I was already suffering from depression and PTSD long before Liam was born. His traumatic birth only made my PTSD worse, more complex. My brain shut off certain parts of my brain and went into survival mode. I was constantly on alert and aware of my surroundings. Survival mode is a pervasive sense of fear, stress, and anxiety, it's a overactive response to stress. My muscles have been tense for 5 1/2 years and as a result have not been able to relax, no matter how many muscle relaxers I take. I survived because my brain shut off emotions in intense situations. There were ratification's like flash backs and extreme insomnia. The inability to get motivated or lose weigh and so much more. How I survived his passing, is much how I survived his life. Survival mode.

A few days ago things changed. Something clicked. I realized then that at that moment, the fog of denial was gone. He wasn't going to walk through the door of his bedroom or I wasn't going to wake up from a nightmare. He was gone and that was that. I wrote the following on Sunday:

Somehow, the pain, feels different. Like losing all hope that I would wake up and the last year was a nightmare, has changed things. The the pain is there and it's more raw than ever before, but somehow things are different. As if this it's not just a thought in my head, but something concrete I can touch. Like the denial has been lifted. In accepting that this isn't a nightmare, I think I've inadvertently accepted Liam's passing. Maybe accepted is the wrong word because I'm not ok with it by any means. I just know he's really gone. I won't wake up one morning to see his face smiling at me. It's just real. No more fog of shock, or fog of denial. It's raw pain. It's like a gaping and open wound that has been open for so long you've become so used to the pain that you don't cry constantly but only when the pain gets worse. Like when missing him gets worse (and it still happens a lot). I miss Liam constantly. It's when I'm flooded with emotions of missing him, loving him and memories that I can't hold back the thick tears and the sobbing. I was sitting in my car yesterday at church when I realized this. The post before this was what I wrote on my page yesterday. You can see the second I realized when it all be concrete. What comes next? I have no clue. I'm still lost in my grief, it's just different now.

Today I came to another realization. We've been in survival mode for 5 1/2 years. It's time to start living again. Time to work our way towards living at least. If it doesn't make us happy, we shouldn't do it. If burring our feet in the sand just to feel it between our toes makes us happy, then that's what we should do. If riding scooters, reading pointless books or painting rainbows makes us happy, then that's what we should do. We have to figure out how to enjoy life again, how to really start living and stop living in survival mode.

Posted earlier on my Facebook:

For so long we've been trying to put square pegs in round holes. Meaning we've been trying to make things fit when they just don't and it's time to make changes. Work with he cards we've been dealt and do what works best for us. I'm sad to see certain things change but for years, since Liam's birth, all we've done was survive. Our motto was to do what ever we had to to survive. At the end of he day, that's all that mattered. It's important that we try to do more than just survive now. We need to find a way to live again and that includes doing things that make us happy in the moment. This isn't just some New Years resolution. It has nothing to do with that. When things clicked Sunday and the denial lifted of Liam's passing, with that brought the notion that it was time to start living again, or at least put ourselves on the right path. Trying to live again will help us to heal, something we desperately need.

We won't ever be the same people we were before Liam was born. It's impossible to forget the love we have for him. We have to find who we are now. Together.

Liam holding a string of lights December 2014

Breaking the Chains

My therapist loves to tell me:

"grief is a choice. You can choose not to be sad. You can choose to move on"

 This statement, which I've heard others spout, is meant to be reassuring and calming. What they don't take into account, are those stuffing from PTSD. Sure maybe for a normal person they can choose not to be sad all the time, or to move past this and not have flash backs. When you suffer from PTSD, you don't have a choice when the flashbacks strike. Especially if your PTSD has to do with the loss of someone.

Truthfully, I had PTSD before my son passed away. My therapist thinks I've had it since I was around 5. Any traumatic event I went through since then, has only made my PTSD worse. My sons traumatic birth open a flood gate of symptoms and his passing only made it exponentially worse. I have no say when I'll get a flashback or what it's about and I surely can't prevent them. I don't choose to be like this. I don't choose to "live in the past". Having someone say to me that I have a choice is both laughable and hurtful. 

I want to break the chains of stigmatism when it comes to grief, depression and PTSD. When I tell someone that I have PTSD, I can see the change in their eyes. Their pupils get a little bigger, their eyes a little wider. Their mouth opens a little and sometimes even a quiet gasp escapes. All before they even have a chance to school their expression. Some even go as far as taking a step back to put space between us, without even realizing they're doing it. It's not meant to be hurtful. It's just an involuntary action. Yet it still hurts. Everything after that just seems fake and forced. 

PTSD isn't something I go around telling everyone I have. Why would I? In fact it's something I feel I was quiet about all too long. I was afraid of how stupid it sounded that I had PTSD. I have never seen war. I have never been in the military. So yea, even to me it sounded stupid. That was before I found out that the majority of those who have PTSD that is non war related, are afraid to talk about it. 

There are many situations that can cause PTSD. In fact it's name alone explains a lot. Post Traumatic Stress Disorder. Do you know what that means? It means any situation that is traumatic can cause PTSD. It's a traumatic situation that puts so much stress on your brain that it goes into what I call "safe mode" in order to protect yourself. Some situations can be blocked from your memory for years  before they surface again and when they do, it comes in flashbacks that feel like your there in that moment all over again. 

Your brain then creates triggers associated with that traumatic event. Smells, sounds, whatever. When your brain recognizes a trigger, it goes into "safe mode". You may start feeling anxious or worried and don't know why. You could get clammy, have a racing heart, experience the feeling of impending doom. This is your brain trying to protect you. It's normal for PTSD sufferers to go through this and more.

For parents that had babies in the NICU, they don't just get better once their child is better. For years they may try to prevent their child from getting sick or hurt. When their child does get sick, or even ends up in the hospital, their symptoms once again act up and they even experience flashbacks from their time in the NICU. Here are some statistics for your:

1.5-6% of of mother's reported having PTSS following childbirth.

26-41% of mother's reported having PTSS after having a premature baby.

27% of parents are reported to have PTSD following PICU.

20% of parents who have a child who suffers from cancer is reported to suffer from PTSS.

44% of NICU mom's are reported to suffer from PTSD,

There's more of us out there than we know, but most are just afraid to come forward and seek the help they need or to talk about what they're going through. If you suffer fro PTSD, PSS, or depression you shouldn't be ashamed. It's not your fault. As I stated above, this is your brains way of trying to protect you. For lots of people, talking about it helps. If you don't feel you can talk to your family or your friends, then seek therapy. It always helps to have a sounding board to let all your fears out on. Someone who will reassure you that, if anything, your not going crazy. I know having since I started therapy after my son passed that it helped me. I'm learning more about what PTSD and depression is and how it affects every aspect of my life.

A therapist will also let you know if you need to seek out a doctor to prescribe medication to help you. Never be ashamed to seek help and to get better. PTSD can make you feel weak but know that your not. After I gave birth to my daughter, I suffered from postpartum depression. I was too ashamed to talk about and seek help. I suffered in silence. As each day, week, month passed, I got worse. It effected every aspect of my life. I got so bad that even cleaning was extremely difficult. After a year and a half, my family sat me down and begged me to seek help. I remember crying and apologizing, telling them I tried so hard. Things got much better after a trip to the doctor and we found a med that worked for me. To think, I wasted all that time suffering just because I was afraid of what others would think.

Lets break the chains of silence about PTSD, PTSS and depression because no one should be ashamed or have to go through this alone.


*PTSS vs PTSD: Post Traumatic Stress Syndrome (PTSS) is the name given to the symptoms that are experienced after a traumatic event. These symptoms can also be delayed and appear from up to 3 months after the event, to some forty years or more post-trauma (after the traumatic event).  Post Traumatic Stress Disorder is (in essence) the same thing, except psychiatry prefers to differentiate between symptoms and the fully activated disorder.

April 26 2016

(April 26,2015)

 

I did something today that I haven't done since my son was alive.

I volunteered in his preschool class.

...

...

...

 

You may not recognize it,

but that was HUGE.

 

Every time I had to go in there,

I'd go in before the kids got there.

Then I would sneak out before they all arrived.

 

(April 26 2014)

 

I was scared.

I was nervous.

I was a wreck.

 

There are so many emotions.

 

I saw how far these kids have come.

The two little girls who wouldn't even talk,

and when they did it was Spanish,

they giggled,

laughed,

said hi,

and they talked a lot.

In perfect English.

 

Most the kids got really excited to see me.

Most of the hugged me.

One little boy wrapped his arms around me as I read to them.

He kept saying "I'm hugging you",

and refused to let go.

Several little girls latched onto my arms while in lines.

I had a kid attached to me almost the entire time.

And when they weren't attached,

they followed me around.

 

(April 26 2014)

 

I sat there and watched their morning routine.

I smiled.

I wanted to cry.

I could feel Liam there.

His square sat empty,

but I could feel him there,

participating in everything they were going.

 

I wanted him to be there.

I needed him to be there.

 

I thought maybe if this was a nightmare,

this would be the time I'd wake up.

When I'd look up and see him sitting there in class.

 

But it wasn't a nightmare.

I wasn't asleep.

This was just more reinforcement that this is my reality.

Not a reality I want,

but mine all the same.

 

I know it's not going to change.

I know I won't wake up from this.

I know it's not a nightmare.

But I can't help those little slivers of hope that work their way into my heart.

 

(April 26 2014)

 

I watched as these kids learned.

As they laughed.

As they showed us how far they've come.

I was proud of them.

And I had wondered how far Liam would have come,

if he was still here.

 

It's a parents worst nightmare.

Loosing a child.

Then trying to live without them.

A nightmare I've been so scared I might have to live for so very long now.

I've been scared since my first pregnancy when I miscarried.

I was terrified from the day Liam was born.

I let my guard down in his last 5 months.

I let myself believe he was out of the woods.

I let myself believe that the worst was over.

 

I always say "if I'd only  known".

There are so many things I would have done if I'd only known.

So many things I would have changed.

But I didn't get to know.

 

Why can't we choose our own journeys?

Why can't we go back and change things?

Why can't we have what our hearts truly want?

 

Because that's not how life works.

 

If only that sentence alone could change everything.

How we feel.

How we act.

 

 

 

 

 

 

 



Positive or Negative

 

 

I used to think of myself as a positive person.

In fact I know I was the most positive person I or anyone I know have ever met.

I was perpetually positive.

Life has a way of weighing down on you.

Of changing you.

I've lived a hard life.

My childhood wasn't the best.

I suffer from chronic constant migraines for years now.

I am in constant pain from Fibromyalgia,

degenerative disk disease,

and arthritis in my back.

I have depression,

PTSD,

and anxiety.

My son was born with Congenital Diaphragmatic Hernia,

and was chronically ill his entire life.

Still I stayed positive.

Granted not as positive as I was before that,

but still positive.

 

In December when my son passed,

it felt like the world was crashing down on me.

Any positivity I had flew out the window.

For months I haven't hardly been able to function,

let alone feel positive about anything.

 

Today I feel different.

I feel sad.

I feel empty.

Just like every other day.

But today,

for the first time,

I felt some hope.

Some positivity again.

Not about my grief over loosing my son.

But for my health.

 

After weeks of trying to get into the lab for doctor ordered test,

yesterday I finally got in.

I parked in that underground parking garage,

despite my unreasonable fear and anxiety.

I stayed in that crowded waiting room meant for 6,

yet filled with 20,

despite the anxiety building.

It took 2 1/2 hours for 5 minutes of blood draw.

But I sat through it.

 

The doctor was testing me for h pylori.

I had decided a while back,

after Liam's passing,

that I didn't care about my health.

Or rather that I didn't have the energy to worry.

Last night I decided that even though I knew that h pylori was an infection,

I should do more research about it.

So I sat down and spent hours researching.

 

I found that this could be a major reason to my fatigue,

vitamin deficiencies,

headaches,

allergies,

and so much more.

Turns out you don't show symptoms of h pylori unless it's been in your system for years.

If you don't get treated as soon as you notice symptoms,

then it only gets worse over time.

H pylori can even give symptoms of fibromyalgia,

or at least that's what I read.

 

Today for the first time,

I felt optimistic,

positive about something.

Optimistic that there could very well be an answer to what's wrong with me.

That there could very well be a cure.

 

It won't help my PTSD.

It won't help my pain over loosing Liam.

But maybe in getting rid of the physical pain,

I'd be able to work on the emotional pain.

Find a way again.

Or a start anyway.

 

I had counseling today,

and I explained to my counselor that I keep moving forward,

in hopes that one day something will click,

and things will start to feel better.

Things can't be right again.

We just have a new reality that we have to find a way to get through.

Or I have to find a way to get through.

Because it seems that I'm the only one struggling.

That's my reality.

 

 

 

 

 

 

 



Stages Of Grief

I look at this pic Lanie and I took at bedtime and think to myself "will I ever be strong enough to hide the pain?" 

Pain isn't a new concept in my life. I've dealt with more than my fair share of both emotional and physical pain living with fibromyalgia, chronic constant headaches, degenerative disk disease and arthritis in the middle back is extremely painful. Pain meds barely stave off the worst of the pain to lower it from "I'm dying" to "this is the worst pain I've ever felt". I don't even get pain meds to treat my conditions anymore because the doctors say pain meds for fibro is a no no. So I don't even get anything for the degenerative disk or arthritis. I just deal with it and take IBproffen on occasion. 

I live with depression and PTSD. It's really hard being so sad you don't want to get out of bed. Or reliving tragedies over and over again in your mind. How do you fight that find of pain? 

But still. None of that compares to the pain of loosing my baby boy. 

I can't hold back the tears. The damn I built up years ago is broken so the tears fall as they may. 

I had to stay strong for so long. For Liam. For Lanie. For Justin. 

I can be laughing one minute and a crying basket case the next. It's uncontrollable. 

I don't know if I'll get "better". Or get "fixed" or be able to bandage the wounds. 

They say there are stages of grief. I saw this neat chart showing in which order you will go through these stages. I laughed. And I cried. Because grief isn't this neat little concept. It's not a perfect diagram. It's a jumbled mess. You may get so far, and then you'll scramble back through the stages you already "passed". Next time you might get further before you do it all over again. A realistic chart looks like scribbles. 

(Image shows two charts of the stages of grief. On the left the perfect concept of how we go through those stages. The one I wish grief really looked like. And on the right is the realistic version of grief. No I didn't make this. I found it on google but I couldn't have explained it better myself..literally. My mind doesn't process things the same now.)

I don't know if I'll ever be happy again. 

I don't know if I'll ever not be exhausted 

I don't know what the future holds. 

Right now my emotional pain over loosing Liam hurts far worse than all the physical pain I'm going through. And because fibro is linked to depression and PTSD it's only natural that my physical pain keeps getting worse with my emotional. And still my emotions wins. 

My heart feels like it's been stabbed several times and that at the worst moments, starts bleeding out again. 

My soul feels like a mirror that's been dropped from a 100 story building. 

My mind feels like it's tying to tear itself into millions of pieces. My body like I keep stepping out in front of a semi going 200 miles per hour. 

I miss my sweet little lamb. I've said it 100 million times and I'll say it forever more. 

To survive this life, I need to find a way to build myself back up to hide this pain. 

I'm supposed to rejoin the human society. One day soon I'll have to return to work. Right now I can't. Even my doctor says I can't. So what? 

All I want to do is stay in bed and cry. I want to tell this life to fuck off. That it's hurt me over and over. That it sucks for dealing me one crappy hand after another. Why should I have to pretend that all is right in this world when my innocent sweet boy was taken from me and never got a chance to have a life? Why should I pretend that I'm ok, that everything's ok when it's clearly not? 

There's nothing right with a world in which children are suffering and dying and parents are left empty and broken. 

Im supposed to trust that this is all part of a bigger picture that will one day be clear to us, maybe. God saved me from death many times in my life. Why couldn't he have saved my son? 

I'm trying so hard not to question Gods plan. I know he didn't do this to Liam. But why couldn't he have prevented it. I want to have that blind faith, where I just trust in him and give it all to God and not worry about it anymore. Not hurt anymore. But the pain and suffering just keeps coming and it's making me weak at times. Like right now. This very moment when I just want to hold my son close, feel him breathing, watch him sleep and kiss his cheek. 

I keep praying for the strength to not question Him. To trust in him with all my heart. 

Dear God,

Please help me to be strong. Give me strength to believe fully in your promises and not question you. Please give me courage and strength to face this horrendous grief and find a way to conquer it. Please keep me in your light and out of the darkness. 

Amen. 

I love you sweet boy. Please visit me in my dreams and know that I'll always love you. Forever and ever. Until we meet again. ❤️❤️❤️

It's Going To Get Harder

(Image is a photo of me holding a sleeping Liam after a long day of bike riding exactly 1 year ag today)

"It's going to get harder before it gets better"

And it is. Much much harder. 

Yesterday we received Liam's DC had delivered to us at church. It had already been an emotional day from the minute I woke up. It's like I couldn't stop the tears.

Today in no different. Loosing Liam might as well of happened yesterday. 

Life is so different now. So sad.

There's still waves of denial where I think that he will be waiting at home for me. That when I pen the door I'll be greeted with his huge bright smile saying "mommy you back" as he runs towards me to hug as tight as his little arms are able. But then as waves of the ocean crash into rocks, so do my hopes. And my heart breaks all over again.

5 weeks tomorrow since I've last held my sweet boy. 

Saying life is unfair is the understatement of a life time.

I remember one day he was outside riding his 3 wheeled baby trike and he "crashed" and fell to the ground with the trike on top of him. He laid there and laughed. He thought it was so funny. 

He didn't get to spend as much time outside as he would have liked. He was always at the doors and windows looking out. This little boy at the age of 1 wanted outside so badly but we had to be so careful with him that he hardly got to experience it. He had been on a 24 hour feed and taking the pump outside had made it harder.  He used to sit at the back screen door and push cat food out this little hole to feed the dogs. He would place his tiny little hands on the screen and the dogs would try to lick him. On other occasions Liam would climb up the couch and sit in the window looking out. He was such a determined little boy. He always found a way to adapt to get what he wanted in one way or another.

There were so many nights when Liam would fall asleep in my arms and I wanted nothing more than to stay that way all night but couldn't because of his continuos night tube feed. Many nights I cried myself to sleep over the injustice. Other nights I would lay in his toddler bed with him for hours until my body cramped up forcing me to get up. And a few nights I was so frustrated I either brought the pump closer to my bed so me could sleep with me or forgot the feed all together. 

There were so many things in Liam's life that were unfair but he didn't mind most the time. 

When he started preschool this year, he figured out quickly that he was different. The kids in his class did as well when he had to go to school with oxygen. But they didn't care. They asked their questions then said he was so cool. One kid even compraired Liam to a firefighter. Liam loved it. On those oxygen days, the teachers would take blocks and puzzles outside for Liam to play during recess since he couldn't run around. The other kids would give up their playground time to play with him. They said they didn't want him to be alone. I was amazed by their acceptance and had cried over how wonderful it was. 

Days are getting harder. His room is still set up and it's s hard to see this room ready for the little by who is never coming back. I don't know how to handle all this. I'm so lost.

Emotional Struggle

That moment at the end of a long day when you just have to throw in the towel, wave the white flag and admit defeat. 

Between stress and allergies, I feel like I've been hit by a Mac truck with a sinus cold on top of it. 

 Not only did I get the stress of what happened with Liam and preschool today  (click the link to read about it http://mommyconfessionalinmyshoes.blogspot.com/2015/08/liam-1st-and-2nd-day-of-preschool.html?m=1 ) but I found out that my daughters already large, 2nd grade class is getting new students from a they class on Monday. 1st graders making her class a 1st-2nd grade combo. 

Today has been a bad day for my anxiety making everything three times as emotional as it should be. By the end of the day I was almost begging for my PTSD to cause another episode of emotional numbness. It's something I've only ever told one person about. Something, until a few days ago, I didn't know what triggered. 

I found the following on a FB PTSD page: 

I found that I'm not the only one suffering with PTSD who has these episodes. Most the time I'm scared after they hit. And always afraid that another episode will hit.

I don't feel anything during these. Not anger. Not happiness. Not love. Just emptiness. A robot going through the motions. 

By the end of today I prayed for one of these episodes to hit. The over active emotions took a toll. Not just mentally and emotionally but physically. That's why I feel like I've been hit by a Mac truck. High emotions effect my fibromyalgia. 

Clearly the meds I'm currently taking to treat my depression and PTSD aren't enough. I need something for my anxiety. It saddens me that I can't just be a normal mom without all the pain, depression and PTSD. But I've learned that having all this has made me work harder at being a good mom. All that matters are my kids and taking care of them. 

That's what gets me out of bed every morning and what makes me work past the pain and misery. Because my kids are my happiness and I need my happiness

. 

Tears and Fears

My sweet girl is battling night terrors again tonight. Here she is holding onto her glow pillow, with her twinkle lights on and her TV. Tonight is bad. I gave her melatonin 30 minutes ago and she's still awake. I just used lavender and chamomile essential oil on her in hopes to relax and calm her. She's been battling nightmares and night terrors for weeks now, ever since school ended and they seem to be getting worse the closer to Liams birthday we get. 

I started seeing the pattern last year as Liam's birthday drew near. Same thing. As well as the year before. She just can't help it and I don't think she even realizes what's going on but it's the same thing every year. Last year it was just speculation but this year proves it. Lanie has an issue with Liam's birthday. 

It's not celebrating his birthday she has a problem with. It's the actual day of his birth. The day he was born was the day I was ripped away from her for a month. Then continuously ripped away from her the next few years. 

When I use the term "CDH hurts everyone" I truly mean it. We all have our scars that we will carry for the rest of our lives. I truly believe that Lanie ended up with PTSD as well as her dad and I did. He won't ever admit he has it but the NICU nurse said he had all the signs and so did I. I went and got officially diagnosed after Liam's discharge from NICU. It's been a hard road working through this as an adult, I can't imagine how hard it's been on Lanie to work through something so complex she doesn't even understand.

I try to help her. I can't always just bring up the subject of NICU or the pain she felt each time I had to leave her. I have to wait until she's ready to talk about it. We've had our talks when she's open and receptive. I do whatever I can to help her through it all but it's not a quick fix. 

This is another reminder of the failure I feel that I am. When Liam was born and rushed away all I could think about was getting to his side, afraid he would pass before I got to hold him and tell him how much I loved him and to fight hard. I quickly hugged and kissed her goodbye without explaining anything, without realizing how this would affect her. But we had nowhere to stay and I would be sleeping in a waiting room chair as it was so I could bring her. 

The one thing I never wanted to do was abandoned my children. I swore up and down before I became a mother that I would never do what my mother did. And now one of my biggest fears is that she feels like I abandoned her. I afraid to bring it up. I'm afraid to ask her. I spend my days trying hard to make up for the time I missed out on with her.

And now here's Liam getting ready to turn 4 years old. He shorter and smaller than Lanie was at 3 1/2 when he was born and I had to leave but he's got the same bright bubbly spirit she had and it only serves to remind me of how much I missed out on. How much she missed out on. How many cuddles we missed. How many laughs we missed. I can't ever get that back. We can't ever get this back. 

I hate what CDH has done to all of us. How it's tested our family and nearly brought us to our end. How it's kept me so stressed and tired through the years that now my body is so tired and worn how I'm sick with constant pain and headaches. Diagnosed with fibromyalgia and I can't get rid of it. I hate CDH!!

My Beeping Life

Since Liam's birth, beeping has been an ever present exsistance in our lives. From the med machines and monitors and ECMO circuit in NICU to the feeding pump and pulse ox machines at home. 

Over the years the beeping and alarms have become a source of distress and anxiety for me. The pulse ox blaring in the middle of the night to inform me that Liam's oxygen levels plummeted because he forgot to breathe in his sleep (he has sleep apnea) or because his lungs are comming down with infection and aren't working as well as they should. The feeding pump with it's constant alarms saying "flow error" yet there being no blockage in the line at all. 

The last one has become such a source for my anxiety that it's probably raised my blood pressure and set me further back in my PTSD/depression/anxiety recovery. It had gotten so bad that I would sit there after hooking Liam up to the feeding up at night and nervously wait for the alarms to sound because the questions was "if" they would. It was "when" they would. 

At the end of our journey with the Joey pump, and Liam's gtube issues last month, my anxiety had gotten so bad that I would just sit there shaking and crying EVERYTIME the pump alarm went off. If the alarms would go off while I was sleeping, you would have thought bombs were being dropped on my house. It's not a metaphor, this is how it all felt. 

It affected my PTSD so horribly that I started having nightmares again about NICU and Liam's birth. I couldn't hardly sleep and started having flash backs again. Going out into public places became an issue again as well. If there were more than 2 people within a 20 foot radius of myself, I just had to escape. I would walk to a different part of the store and if it continued to happen, I would just leave. 

I never imagined a beeping sound could hold so much power over someone. Never thought anything would effect me the way the alarms do. And even though it's been 2 weeks since we got Liam's new feeding pump (the infinity) and he had his gtube surgically fixed, I am still dealing with the effect of the beeps. 

The slightest beep will wake me up from a dead sleep disoriented and freaked out.  I have issues listening to even the beeps of items being scanned at the store. And all I really know is that this is my beeping life thanks to CDH. 

The beeps aren't going to go away. They're effect on my won't stop with a snap of the fingers. Even tonight being woke up in the middle of the night by Liam's machines was an extremely stressful event. What they represent is an important part of our lives that we can't just turn them off. So I must endure the mental and sometimes physical pain these beeps cause me because it's for the greater good. That act doesn't make me anything special, it's just means I'm a mom who loves her baby boy more than herself and will always put him ( and her daughter) before she does herself. 

Kindness

Today is Kids Day and as I had over my dollar bill to get my paper I am flooded with emotions. As I drive away, I fight against this flood of emotions that wants me to cry. To let loose and set it free. And I'm reminded that I'm still living with PTSD from having my own child in the NICU/hospital. 

Today the emotions were harder to control and a few tears slipped past the barrier. I would have laughed at how ridiculous the whole situation filled but the truth is, it's not ridiculous. It real. It's honest. What's ridiculous is to think I should hide this "brokenness". 

Am I really broken just because I get chocked up at the sight of a baby in the NICU fighting for her life? Am I really broken because I feel for that babies parents and wish I could make it better for them? 

No I don't think I'm broken. I'm me. My experience has made me stronger. It's made me want to help others who are going through this rough journey. It's not easy to have a child in the NICU or in and out of the hospital. So if my only scars are these emotions that I wear on my sleeves then, I can live with that. 

I can be over sensitive it's true, but that sensitivity has allowed me to key in on my son and get him to the hospital before his health declined drastically. It's given us a leg to stand on in our many fights against pneumonia and RSV. 

I'm living with PTSD. I'm not sure I'll ever be cured but I'm not going to hide behind a fake smile. I'm going to let these emotions fuel my fire to help others.

CDH awareness week is comming up (March 25-31). Do something nice for someone in the name of CDH awareness. Breath of Hope  Started the Kindness Project to help spread awareness and I hope you will all join in. 

And of you live in our area, look out for the volunteers wearing bright orange kids day vest and pick up a copy of the Kids Day paper. The money benefits Children at Children's Hospital Cental California (Valley Children's). Read Olivia's story on the front page. 

My NICU PTSD Experience

PTSD doesn't just effect those who've been to war or in the military. We learned the hard way that it effects families of those whose children are born sick and spend time in the NICU watching their baby struggle and almost loose the battle. When I was first told by a NICU nurse that she thought I had PTSD I was confused and asked why she thought that. After talking to her extensively about it, it became painfully true. And even more painfully true as my doctor back home diagnosed me with it as well. It was hell. Reliving the heartbreaking tragic moments over and over again. Flash backs and nightmares. The crying and freak outs. I never knew when I would have an "episode". I am thankful that 3 1/2 years after Liam was born that I haven't had an "episode" in a while and the last few nightmares I had I was able to get through and not let the feelings linger. In a way I feel blessed to have gone through this journey because it has only made me and my family stronger and now we get to concentrate on the present and making up for lost time. We try to enjoy each day for what it is. God gave us a little boy that can overcome anything and a little girl who has learned to overcome anything in her path and loves with all her heart. We could have walked away from this sad and miserable but we choose not too because life is too short. We choose not to let the bad take away the good. The first year was the hardest. The second came real close. His third year has been a complete different experience and for that we have to be thankful. If you aren't thankful for what you have then you don't deserve to have it. I won't say that I'm 100% PTSD free. I don't think I will ever be. But it's manageable and will get better with time. Maybe it's Gods way of reminding me that sometimes you have to have nothing to have everything. When I was on my knees (well stuck in bed after an csection) I ran to God. I prayed, begged and pleaded for Liam to survive. I confided in him and told him that I truely didn't think I was strong enough to go on without my baby boy. It was the weakest I've ever felt in my entire life. Everything about NICU seemed like my own personal hell. The first week was difficult to say the least. I couldn't take anything good from the experience. All I saw was hell. All I did was pray. The beeping of the machines. The alarms going off telling us something was wrong. The tubes, wires, all overwhelmed my tiny little boy laying on the bed. On many occasions I was pushed out of the way so that they could help him. I didn't mind being pushed. I got out of their way as fast as I could knowing that his life was in their hands, and Gods. Day in and day out, I sat there alone listening to the beeping. When the day came for his repair surgery, I sat there alone, not knowing if he would make it through the procedure or the critical days to follow. I can't say I processed things properly. I don't even think there's a proper way to process it but I did the best I could. I'm happy and blessed to be in a much better place mentally now than I was then. I reach out to other parents who've gone through this or are going through this and help them in any way I can. It's my way of overcoming and making sure no one goes through this alone like I did. It's a rough road and you come out with scars but you can survive. 

Shaken Faith

          Yesterday during bible study we were discussing what we now consider as ludicrous laws. Back in the time period they were written they meant something but in this day and age they are laughable. For instance did you know that in Palm Springs CA there is a law that states you cannot walk a crocodile down Palm drive between 4pm and 6pm?

          Or in New York city it's against the law to suddenly open an umbrella in front of a horse? That seems like a ludicrous law but back when it was written, horses were the main source of transportation and the act of suddenly opening up an umbrella would scare the horse.

          This conversation lead to a conversation about faith. How the devil will do whatever he can to destroy your faith. In the midst of this conversation I was taken back to a time when my faith was shaken. Something I hadn't been sure how to express without making it seem as if I'd given up all hope in God and his love. I haven't made it to church but maybe 3 times this year so far. I admit that it's been very easy for me to find an excuse not to go. Yesterday I put my foot down and decided not to take no for answer. I would drag my butt to church. I'm glad I did too because I feel I was meant to hear the lesson we learned in bible study yesterday. I was meant to hear it and be inspired to write about the time my faith was shaken.

          The moment your faith is shaken it changes everything. Your outlook on the world shifts and changes, becomes distorted and ugly. You not only question God and his motives, but question everything in life.

          When Liam was born with Congenital Diaphragmatic Hernia my faith was shaken. The mountain of my faith and confidence felt like a earthquake shattering the foundation around me. I wasn't sure I'd ever have complete faith in God again. I was angry. Furious that this had happened to us, to me. Not my boy, I couldn't loose my son. When I found out I was pregnant, I had prayed hard for a son. A little boy that would play in the mud and track his muddy foot prints all over the house. A little boy to chase after the dogs, climb trees and gross out his sister. I had my girl and now I wanted my boy.

          This would be it, our family would be complete. My dream of bringing home my perfectly handsome baby boy and spending days cuddling and tickling his little toes was shattered. Instead of being presented the perfect dream, an alternate reality was presented. My heart shattered. My faith shook with a force that could move mountains. All I could do was ask "why?". Why my son? Why me? Would God really take him from me after all I'd gone through to have him? Would I never get to hold my son while he was alive and breathing?

          When something this devastating happens, all you can think of is who to blame. Whose fault is this? Did I do something wrong? Does God hate me? I didn't even think to blame who was really responsible, the devil. He set my world on fire and it burnt to ashes. At least that's how I felt at the time. Those first 2 days I didn't know what to do. I was lost and confused. A part of me hated God, another needed him more than ever. I spent many days and nights begging him to heal my baby boy and angry that he didn't.

          I'm not sure exactly what moment I let go of the anger, or at the least decided it wasn't important. Somewhere around 2 weeks after Liam's birth I stopped being angry and accepted that this was the way it was. I continued to pray for God to lay his healing hand on Liam so that once day I may hold him, take him home where he belonged. I remember when it was touch and go with Liam's health that I told God that I wasn't ready for him to take Liam home to Heaven. I told him that I still needed him and that I didn't know what I'd do without it. I also stated that if he had to take my baby that he would give me the strength to not be shattered and broken for Lanie's sake.

          I had begged that if he must take Liam that I had to have the strength to carry on and care for Lanie and give her the love and attention she deserved. But I begged endlessly for him not to take Liam. My heart was still broken and I didn't feel I could survive anymore hurt. My anger at the whole situation would leak out now and then even though I tried to keep it locked up in a vault.

          I had never felt so lost as I did after Liam's birth. Every day I sat by his side watching his struggle I became more lost and broken. Those first 2 weeks were my own personal hell. The only way I can explain how it was is to tell you how I felt. I can't tell you actual moments that happened or what was said to me but I can tell you how I felt. I know the Doctors and nurses talked to me everyday. The nurses almost constantly but I can't tell you what they said. My responses were automatic. I was lost in myself trying to make sense of it all. I was so angry and so hurt.

          I remember thinking that I should talk to Liam. That he should hear my voice because I read a study once that said talking to them can help the healing process. I tried. I really really tried but I was so angry. I didn't know what to say. At first all I could say was his name. When the words "I love you" finally escaped my lips, I cried. I couldn't stop the flowing of my tears. I remember this happening a few times and my favorite two nurses would quietly hand me tissue and hug me. They let me cry it out. It had to come out. No matter how much I cried the pain never eased.

          It's been 3 years now and it still hurts. Not as often and not as long, but it still hurts. I feel like the pain will always be there and that it is now a scar on my heart that will never go away. I don't want it to because I feel like if it does I'll forget how it felt to be so lost and to have my faith shaken so horribly. Even when my faith was shaken, God's faith in my wasn't. His love stayed and surrounded us. God had faith in me when I wasn't sure I had faith in him.

          The devil almost won that day. God's love for me and faith in me kept me going. I may have been angry and had my faith slipping from my fingertips but I held on and fought. Never will I forget the hard, dark times lost in myself, in my misery. God never left my side even when I almost left his.

July 2011

July 2011

09/07/2014

July 2014

I rejoice greatly in the Lord that at last you have renewed your concern for me.

Indeed, you have been concerned,

but you had no opportunity to show it.

I am not saying this because I am in need,

for I have learned to be content whatever the circumstances.

I know what it is to be in need,

and I know what it is to have plenty.

I have learned the secret of being content in any and every situation,

whether well fed or hungry,

whether living in plenty or in want.

I can do everything through him who gives me strength.

Philippians 4:10-13

Coping

WebMD describes depression as intense feelings of sadness, and other symptoms like loosing interest in things you enjoy. WebMD has a great tool to help.

 I'm currently battling the worst of my depression and PTSD. This is my third round of meds trying to treat the depression and PTSD. The side effects were always so bad I just couldn't stay with the meds but WebMD says to stick with the meds, that it could take months to help. They also say to talk to your doctor because you could need a different dose.

WebMD says excersize can help. Thats great and all but I cant find the energy to do so, or the will to push myself.

This last few weeks have been so stressful, especially this last week that yesterday I was maxed. I was so stressed out over Liam feeding supplies still not being here that I shut down. One minute I'm sweeping the kitchen and the next I'm crying and cant stop. It was hard to breathe. I was taking these gulps of air as if I was a fish stranded on dry land. It took me 10 min to pull myself together and calm down. After that I just emotionally shut down. Even today I'm shut down. I'm exhausted and all I want to do is sleep (another sign of depression). I think another factor is my PTSD here. As I'm fighting for Liam's feeding supplies all I could think of was if I don't get his shipment he's going to end up back in the hospital for weight loss, breathing issues and they'll hold him until we get his delivery and he starts gaining weight. All those hospital stays kept running through my head. Seeing Liam behind those metal crib bars, the beeping, cold uncomfortable pull out beds. I felt cold down to my bones and Liams sad face kept showing in my head.

At that point I started crying. I felt like I couldn't keep doing this. Like I had nothing left in me to continue a life of this. And of course that made it worse because its my responsibility to care for Liam. Mine. He should never have to see his mother break down like that and neither should Lanie. I never want Liam to feel that this is all his fault, because he did nothing wrong. That was my last straw, the exact moment when I said no more and refused to wait any longer to begin treatment. I re-starting taking my Paxil and made an appointment with a doctor to make sure I should stay on this med as well as deal with my other medical issues.

I feel resigned to the situation. I have no choice. Things have to change. I'm so angry all the time over everything. I'm angry at every day things as well as everything from Liam being born with CDH and my painful pregnancy. I started having flash backs again and nightmares. So far they haven't been too bad compared to what I've had before.

My life has been one bad card after another since the day I was born, or probably even conceived. Its a very long story that I still don't want care to get into. I was so angry yesterday questioning how bad things could continue to happen to good people. Why on earth I keep getting the short straw when all I do is give and help people. So would the theory be that if I stop caring for others that good things would then happen to me? I highly doubt it. Besides my heart isn't wired to not care for others. I honestly believe its a fault. I will give and give until I have nothing left. This blog post is the last thing I have to give right now, in hopes that maybe somehow something I wrote here today will help someone else.

Yes I had a bit of a breakdown yesterday,

But today I'm still breathing.

Still here to tell my story,

Take care of my kids.

I think that says a lot.

Sometimes you just to let it go,

let it go,

shut down,

and start all over again tomarrow.

I'm taking life one step at a time right now. 

Today I will NOT care about tomarrow.

I will find something today that can make me smile,

make me feel good,

even if only for a few minutes.

Liam is 2 years and 8 months old now. Some days it feels like we were just in NICU yesterday. Every time Liam has a hospital stay I have to start all over in coping with everything. This last break between hospital stays was 8 months. Before that the longest was 8 weeks. It takes work, doesn't go away over night.