Hiding

I can't sleep.

My brain won't stop. I just replay all that has happened over and over again. How do I shut it off and just accept that this is my life now? How do I let go of the anger that is eating me from the inside out? How do I feel whole and when I am so lonely and broken?

I hate the holidays. They are just a reminder of my dead son and broken family. I feel like an ungrateful bitch. I know people have it worse. I have a good extended family, a few loyal, wonderful friends, and two beautiful sons. Can't that be enough? Instead I just feel like I am missing something. I can't feel the void no matter how hard I try.

The truth is that I am ashamed. I want and need help, but I don't know how to ask for it. When I was in college I totally freaked out and started having panic attacks. I was overwhelmed and didn't know how to handle it all. I look back and almost find it funny that me trying to be perfect and good enough kind of started all of this. I couldn't explain to my 18 year old friends why I didn't love college like they did. I turned into a recluse of sorts. I was so ashamed and felt so abandoned that I really never tried to put myself back out there in the ranks of them. M stood by me and I felt it was okay if I had him. Over the years I made a few close friends that I really let get to know me, but I still felt that I didn't need a lot of people as long as I had my family. It's funny that M stood by me then, but he always made me feel not good enough. He always held the anxiety issues over my head. In hind sight, he was a jerk. I fought through all those issues to finish school and do what I needed to do. I know I am a control freak and perfectionist, but that is who I am.

After the boys were born, I couldn't stand the look people gave when they heard about Noah. I perfected saying all was ok. I would smile and make small talk. After he died, I just didn't want to talk to anyone. It was too hard and dam it, what the hell did they know? They all had their perfect families. When M left, I didn't tell anyone, but my Mom for months. I was so ashamed of what my perfect dream had become. I still am. I wanted forever with my perfect house and perfect kids. Now I don't even know what perfect is. Why am I so ashamed? I didn't abandon my family and do the horrible things that M did. I sometimes think if we just moved far enough away, I could escape it all. All he taught me is that everyone leaves and I should trust no one. That is a shitty way to live.

I guess if you are told how terrible you are long enough you begin to believe it. I must have been a terrible wife to deserve all he has done. I have build a wall around me and I don't let anyone in. The one person, who was nice to me and tried to have a relationship with me, I pushed away. What if he was just a liar who would turn on me? M made me insecure about every aspect of my life. I hate him for having so much power over me. I don't want to be alone forever but I don't know how to open myself up to dating. If I can't stand me, how will someone else ever love me? Sometimes I think of asking him out. Maybe dinner or something simple, but I think he got tired of trying and I am too afraid of making a mistake or being rejected. I don't blame him cause he tried harder than I ever would have. I just can't see what my life could become if I opened myself up.

I have been trying to lower my expectations. This single parenting thing is overwhelming. I am so afraid of failing. There is never enough time, energy, or money to get anything done. There are some days that I just want to crawl under the covers and cry. I need to fall apart so I can move on. I am afraid that if I really let go that I won't be able to get back up and keep trudging on. It's like I am swimming through thick mud. I never get ahead yet I just keep going. I am exhausted and feel like I am failing no matter what I do. I have these ideas of taking a class or just getting out with the girls, but it means being away from Monkey even more than I am now and spending precious money that I should be saving for him. That just leads to the guilt that swallows me most days. I just don't know how to do it all by myself. I want more than this. I want to feel free and happy. I want to look forward to a new day, not just figure out how to survive it.

I am sorry for the pity party. I know it is pathetic and I should buck up and deal. I am just so freaking tired of having to hide how I feel or how alone I am. I want to feel good about me for just once. I want to be proud of the life I have now, not the joke of one I had before or the one I am too afraid to dream about in the future. I just want to feel loved and okay with who I am regardless of how it all ends up. I get one life. I am tired of wasting this one being afraid and so alone. I know I just need to take one step in a different direction to change things I just don't know which way to go...

#2

So M is about to have baby #2. Glad to see that birth control isn't a priority for them. It's funny, but I don't know how I feel about all of this. It doesn't surprise me, but I worry about what that means for Monkey. He is moving into the role of the accessory kid for M. In a way, it just reminds me that I feel stuck. I have done things to move on, but I haven't really taken a leap into expanding my personal life. Maybe I need to put myself out there, but honestly when would I have the time and I just don't know how.

Monkey is spending the night with M tonight. It is the 2nd time and it still sucks. My house is so freaking quiet and I miss him. I know I can't fight it, but it makes me crazy thinking about them playing house with my kid. I worry what kind of example they are setting for him. I have tried so hard to give Monkey all he needs, but sometimes I don't know if it will be enough to offset what M teaches him. I guess, I can do my best and pray that it is enough. I am going to enjoy a few drinks with friends and try to sleep without my snuggly Monkey next to me.

Happy Birthday!

Happy 4th Birthday!

So happy and sad...

I love you both to the moon and back!

Here I Am

I quit writing so I could quit thinking. I so desperately want to piece my life back together into something meaningful. I left this babylost world to see if I could function in the real world. I thought if I stayed away, I would somehow not dwell on my own losses so much. What I found is that the losses are always there and it is just that much lonelier when no one understands.

Life as a single mom is exhausting. I applaud anyone who does this with multiple children. I know I would figure it out if I had to, but really this is hard. The days all blur together because they are the same. There are not enough hours to be at work, doctor's appt's, and school drop offs all at the same time. I never realized how much work a house is until it was all mine. I love my house, but what was I thinking? It is never clean enough and my living room is beginning to resemble a toys 'r us. I don't have time to write because by the time Monkey is asleep, I am too tired to stay awake.

I need a change. I need to lose this need for perfection or some version of it. I want to embrace that I am lost and just be okay with it. I still miss my son beyond words and cannot make sense of how someone I loved so much threw me away. My heart is broken and it starts to heal over just long enough for someone to peel the scab off again. Some days I can kick the world's ass and others it has kicked mine.

How long will it take to feel whole again or is that impossible given the hand I was dealt? I just feel empty. I began seeing a new therapist and it kind of helps, but there are no real ways to right the things in my life. I am working on a new me, but really I am too tired to devote much time and energy to it. Worst of all, I am so humiliated by how my life has turned out. I know I didn't do this, but I can't relate to happily, married of parents of healthy, alive children. Fuck them. I can't breathe when I look at their perfect families.

Monkey started preschool two weeks ago. I was so happy for him, but it was gut wrenching to realize two little boys should have been starting school. It is all so bittersweet and grabs the grief I have been so carefully shoving down and brings it all to the surface. I dropped him off, gave him one last hug, and sat in my car and cried. I am supposed to make a poster about Monkey. It ask for pictures of his family. How exactly do I do that? I tried to be a bigger person and asked M for a picture of him and Monkey. I found one of Monkey and I to include also. What about Noah? It feels like a test of my love for him. Do I put a picture of Monkey's little brother so he can explain that he lives on the moon with God? Seems a little heavy for a bunch of 3 and 4 year olds.

I just want to be happy and feel joy. I have small moments, but they are fleeting. Monkey is such an amazing little boy that I can't even express how much I love him. He brings me joy, but it is always tinged with a little sadness. I have been thinking of what I should do to change our lives. Dating? I work and take care of Monkey. When and where would I meet someone? I don't actually know if that would make me happy. Maybe just not so lonely. I am not sure I could trust or even be open to a relationship. I haven't done a great job with that so far. I think I blew what could have been an okay thing, but just being scared. I am ashamed of most of my life so that makes it hard to open up and share. I know I need to focus on the positive and work from there, but that is easier said than done. I have some great friends that have stood by me through it all, but I have lost touch with most of the people I grew up with. It is so hard to look at the them the same and M seems to have won the game of choosing sides with our mutual friends. I am grateful for my friends and family that are here, but I need to expand my circle. It is so hard for me to do that. Small talk is impossible for me and I don't have time for gossip and games.

I know I have a long way to go, but I also know I have come along way. It is so easy to get sucked into it all. 16 days. I can feel it coming and yet I am so unprepared for how I will mark my boys' special day. I want to celebrate Monkey and show him what a miracle he is, but I struggle to find the balance in remembering Noah. I am always torn and maybe it will always be that way.

I am sorry I have been away so long.

The Wait Begins

I took Monkey yesterday for his follow up labs. Two weeks. That is how long it will take to find out whether we are okay or have signed up for a whole new fight. Monkey has been fighting infection after infection since Christmas. Nothing severe, but they never go away either. We saw a new immunologist in February and after my pleads for more testing, she ran his antibody levels again.



Last year, Monkey was fully vaccinated and responded well to Pneumovax. When we ran the labs in February, he only had sufficient antibodies to 3 of 14 titers. Monkey received another Pneumovax shot (which was totally miserable). We waited the 4 weeks and had the labs drawn again. As we wait, he has green goop coming from his eyes and nose. What is so frustrating is that we just finished the stronger antibiotic less than a week ago. That was the 8th antibiotic since Christmas.



If he doesn't respond, we know that his immune system is not working and it explains the infections. It also means the possibility of monthly IVIG infusions and more sickness. If he does respond, his immune system does work and we begin the whole cycle of infections and testing all over again. I am worried he will respond and then it will take another year to find out if he maintains the antibody levels. If he doesn't keep them, I don't really know what happens then.



I haven't really considered the option that his levels will be good and that the infections will stop. It has been over two years since this struggle began and I just can't see it ending that easily. It has taken over my life and filled me with worry and fear for my son. I have held him too many times as he has endured the needle sticks, PICC lines, and scans. So many tears have been shed by him and I. I hope and pray that the news is good. For now, I just wait.

The Moon

"Mama, where is the moon?"

"It's not out yet."

"Mama, Noah is talking to me."

"Really, what is he saying?"

"He says to get him off of the moon."

I only wish I could get him off the moon.

"Monkey, Noah isn't really on the moon. He is an angel in Heaven. Noah is with God."

"Noah loves God. Why is Noah with God?"

"God needed an angel so he grew wings and flew to Heaven."

I don't know what to tell him. I don't dare say Noah was sick as Monkey understands sick. I don't want him to think something will happen to him. How do I explain to a 3 year old what happened to his beloved little brother?

These conversations keep occurring. I am not sure what triggers it for Monkey. We can be in the car, lying in bed, or just playing outside and he starts asking about Noah. It breaks my heart and makes me whole for just a few seconds all at the same time. I love my boys so much. How I long to hold them together just one more time.

Thunder

"Mama, I hear something."

"What do you hear?"

"It's thunder. Mama, the angels are bowling. Noah is bowling." (My Papa used to tell me that when I was little and afraid.)

"Mama, where is Noah?"

"Monkey, Noah is an angel in heaven."

"Where is he?"

"He is like a star in the sky. He is watching over us and sending us his love."

"I want Noah. I miss him. Mama, get him for me."

"Monkey, I can't get him. He is in heaven. I wish I could, but he is an angel now."

Mama, call Mima. She will help you get him."

_____________________________________

"Mama, the moon is out. Noah lives there. He is watching me."

"He is?"

"Yes Mama, he is watching you too."

"Mama, he loves you."

"I love him too."

"Mama, I miss him. Mama, was I an angel too when I was a baby?"

_____________________________________

I don't really know how to answer his questions. It breaks my heart and brings me closer to my lost son all at the same time. I mourn the boy he will never be and the brother that Monkey will never know. He left a void that can never be filled. I miss him. Monkey misses him.

A Day at the Park

Safe

I don't know how I feel. It is all so confusing and scary. All I know is that he hugged me and gave me the sweetest kiss on the forehead. I felt safe. I felt worthwhile. That has to count for something right?

Things are moving very, very slowly. It's hard for me to just be me and actually talk about my life. I am trying not to hide the details that make me cringe to think about. He has his own baggage. Two kids, a crazy ex-wife who decided that she gave up her youth when she had their kids. She is my opposite. She is more than willing to forgo a night with her kids for a night of partying and drinking. Listening to him makes me realize she is the female version of M.

I have no idea where this goes, but I am trying to just have some fun. I have been upfront that I don't know what I want. I am still finding me. It may turn out to be nothing, but I have to learn to trust again and it is worth a try. Just maybe I can be happy.

Happy Valentine's Day

I took a chance.

I still don't know what I want or even what would make me happy. I have no idea where it goes from here, but for a few hours, I laughed, smiled, and let someone be nice to me.

I even let him kiss me goodnight.