Ramblings of a Grieving Mother

I haven't forgotten to post, I've just started several post but never finished them. It's like I can't ever finish a thought. All I seem to finish typing are ramblings. The ramblings of a grieving mother. Maybe that's the post I should share. The ones that start out so strong and with a point and then just like a snap of fingers, the thought is gone. Not gone but unable to grasp it in the sea of emotions and floating thoughts fighting to break free.

I've been so busy lately. I've purposely took on so much more than I know I should have just so I don't have time to truly sit and think. Or sit and feel the pain at its rawest. I get done with one project and add two more in it's place. I need to slow down, I know I do, but I can't. I literally can't. I don't  know how and I don't really want to if I did.

We had a Sweet Sisters birthday party at our church. It kept me busy for a few weeks. Team Kids and Simple Supper started back up so that leaves my Wednesdays chaotic at best. We have our first event this Saturday for Sent from Heaven. I've been busy shopping for supplies, creating centerpieces and writing speeches. I'm excited that  our nonprofit has come so far in such a very short time. I have no doubt that Saturday will be hard when I have to get up in front of everyone and tell my story of loss. I've yet to tell it without crying. Then it's all statistics and facts from there.

Lanie's 9th birthday is coming up quickly. I'm also busy trying to plan a surprise birthday party for her. I didn't realize how hard that would actually be. In the midst of this, I'm also trying to plan a baby shower, a gift for my husband's birthday and a revamp of my daughters bedroom that includes a new bed. One I have to order and put together. Plus I'm already planning this years CDH awareness picnic, organizing our toy drive and helping run a nonprofit. I'm not bragging. I'm just emphasizing how busy I'm trying to stay because when I stop, the pain sets in.

I don't want to feel totally broken inside. I can handle feeling physically broken but emotionally broken is a whole new level of pain that hurts beyond imagination. I have my moments. I can laugh with my coworkers. Enjoy a cup of coffee. See a movie. Read a book. There was a period of time when I could do none of those things. I would sit there crying uncontrollably or I was frozen, starring into nothing. I could easily be that again, on my worst days I am, but I don't want to be.

God's promise states that Liam is in heaven. He is completely healed and made new. God's promise states that I will see him again when I get to heaven. I cling to that promise like a life preserver in the middle of a harsh storm in the ocean. That promise gets me out of bed each morning. That promise got me to rejoin society and return to working. I'll never tell you it's easy. I'll never tell you that I'm over it. None of those things are true. I will tell you that things get different. The change isn't easy by any means. It's like surgery, it hurts and it's cutting a piece of yourself off your body. A piece you didn't want taken away. When you heal, it leaves this huge "ugly" scar. You'll never be the same.

You spend the rest of your life missing that piece in every moment. Especially holidays, birthday and any other celebration. There will always be that shadow that follows you around. You can't run from it because it's part of you now. It's in everything you do. Let me let you in on a secret though; that's not always a bad thing. Because of Liam Sent from Heaven was born. He's not the only reason but he's my main reason. We all have our own reasons. We do it for our own angels.

I had a choice. I could have ignored God calling me to be a part of this. I could have stayed home, comatose and shattered, where I would never heal. The truth is I wanted to heal. I wanted to get better. I don't want to "get over it", I want to live with it instead of ending my life to end the pain. Helping others going through what I'm going through is my band aide. It's aiding my healing. When your grieving you have to find your band aide unless you want to live with a gaping wound.

I won't begin to tell you that I know how this life will play out. I won't tell you after such and such time, things will just be better. There is no timeline. No expiration. No finish line to this pain. Like I've said a million times, it doesn't go away. It changes and becomes something different. Like energy. You can either choose to let that energy burn you, or you can choose to focus that energy and make it fuel you. My hope for anyone struggling with the loss of a child is that you let that energy fuel you to do something good.

Remember, God knows his plans for us. He's seen all and knows all, more than we can even begin to fathom. He wants good for us. He wants us to prosper and grow. He doesn't want us harmed or hurting. He doesn't take our babies from us. Yes he could have saved them, but he sees all and knows how any and every situation would play out. He chooses the best. Don't be angry at him, be angry at the devil who decided to pick on our babies. That is the hardest thing to remember when your hurting. Trust in God and his plans. One day they will be revealed to us.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Beautiful Life, Beautiful Mess

I hated to see my little lamb sick.

For 4 years, 5 months and 1 day I sat my his side and watched him struggle one issue after another.

It broke my heart.

At times it felt like my soul was breaking.

It took a long time for me to see the beauty.

The beauty in the struggle.

The beauty in the fight.

The beauty in survival.

We fought hard.

With every breath we had and every bit of energy we had,

we fought hard.

All of us.

I can't deny that we gave our all.

I can't deny that there's beauty in the mess.

I watched as he quietly took his treatments and his slew medicines.

I watched as he smiled at countless nurses, doctors and surgeons.

I watched as he quietly struggled to breath more times that I can count.

He cried to play outside.

He cried when he wanted something he couldn't have.

But he never cried over being stuck in a hospital room.

He never cried when he had to go to the doctors.

Instinctively he knew what he needed.

He took it with more grace and dignity than a grown person.

There's something about watching someone who is broken,

rebuild themselves one piece at a time.

It's like a phoenix rising from the ashes.

Liam was like that.

A presence that demanded attention.

A light within the darkness.

His lowest point was moments after he was born.

I watched as he rose and survived.

I watched as he spent his whole like trying to survive and live each day to the fullest.

His little hands grasping hotwheels.

Singing along with Mickey Mouse.

It was beautiful.

It was our beautiful mess.

(January 5th 2015)

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