Hospital Round 2

Before....

After....

We are beginning day 3 on the pediatric floor and it is amazing what high doses of antibiotics and steroids can do. We came in with a 104 degree fever, raging sinus infection, and developing pneumonia. I had never seen Monkey fight so hard to breath and become ill so very quickly. It started as a little cough over the weekend and exploded into one of our worst episodes overnight.

Monkey has been a trooper. A CT scan, chest x-rays, and a PICC Line later, he barely even flinched. He either is the bravest kid I know or he just felt so rotten that he didn't even care. Watching them take him away to put in the PICC ripped my heart out. I had really hoped it wouldn't come to this again. It has only been 6 weeks since our last hospital visit and he has been on antibiotics ever since. Ironically, the drugs ran out Monday and we were admitted Tuesday morning.

I am fully convinced more than ever, that his immune system just doesn't work. They are running more labs, but it will be a week or so before we know anything. In another two weeks, we will see the new immunologist and I can only pray that he will continue testing until he finds something.

I am guessing we will stay another 3-4 days and keep the PICC another month. Not exactly as I had hoped, but I will do whatever is needed to make my sweet boy feel better. I am thankful tonight that Monkey is beginning to feel better and at least we seem to be on the path to figuring this all out.

Enough

I'm done. I am just freaking done. I am tired and sick of worrying about how all of this will go. The last few weeks have sucked in ways I can't begin to explain. I just need to purge. It's not pretty, but I just need to empty my mind.

Monkey being sick. Work is so busy I can't think. M welcomed his 2nd living, breathing, healthy child without me. I am alone. I am so scared of being alone forever and more scared of letting someone in to hurt me all over again. I don't think I can live through any of it again.

I haven't been sleeping very well. I can't shut off my mind. It's like I take one step forward only to move back 5 more. Right now it feels like it will never be okay. I love Monkey and am so grateful for him, but I am not happy. I lay in bed crying the other night only to realize that Monkey, who I thought was sleeping soundly, was watching me, patting my back, telling me it is okay. How wrong is that? I feel like I am failing in every area of my life. I am trying so hard to hold it all together, make a living, and be supermom all at once. The pressure of it all is sinking me. I feel like I am going to crack. I try to hold it all together until he is asleep. I even failed at that.

I am so selfish sitting her wallowing in my own pity. I have it better than so many others and yet I can't shut up and just be happy. I just feel so broken. Losing Noah took away any confidence I had and M leaving without even looking back just finished it all off. It is weird because I don't miss him, but I miss the security of having another human being to lean on and just talk to. Now it is my job alone to figure out how to make my son better, to work and be with him at the same time, and show him a better life. I can't do it all alone and I don't even know how or what to ask for help with.

I think I have stumbled on a new grief. What if I never hold another baby in arms? I long for a child, but I long more for a family. I know Monkey and I are a family, but it feels broken and like so much is missing. I don't even know how to meet anyone. I don't know how to let anyone into my fucked up world. I can't even answer the question to how many children I have. That alone is enough to send someone running. The one person who really tried to get to know me has given up I think. I pushed him away and second guessed his intentions until he just got tired of trying. I think of calling him and telling him that maybe we could give it a chance, but I am too scared of rejection and of actually having to follow through.

I am trying to move past being perfect and what my idea of perfect was. I thought a perfect family was two parents and lots of kids. Maybe a mom, a Monkey, and an angel will have to be enough. Maybe that is perfect for us. All I want is to make peace with what is and figure out how move forward. I know I need to be happy in order for Monkey to thrive, but it is just so much harder than I thought. Right now, I just want to be able to relax and enjoy what I have. I want to be able to breathe again.

Sick Again

I wish I had more time to write. Purging my thoughts seems to help me focus. When I get it out, I can sleep and shut off the running commentary in my head. To say the least, life is a little overwhelming right now.

Monkey has been sick since before Thanksgiving. It started as a cough and landed us in the hospital the week before Christmas. We treated it as a sinus infection to begin with. We figured it was just another round of the usual. For a week, it bothered me that he didn't seem better even with the antibiotics. My daycare called one day after Monkey's nap and said he just didn't look right. I took him straight to our pediatrician and I knew on the way that we just got us a trip to the local hospital. Sure enough, he had pneumonia in one lung and after three days of steroids and antibiotics, he still had a raging sinus infection. Monkey had a follow up CT last Friday and after a month of antibiotics, he STILL has an infection. When the nurse called with the results, I just cried. I am so frustrated. It is NOT normal to keep an infection after being treated for that long. He is beginning to ooze something, so I guess it is time for the stronger meds the doctor suggested. I will call tomorrow and hope his little tummy can take the meds.

I have been researching immune deficiencies online. There is so much info and Monkey seems to fit the description of a selective immune deficiency. Monkey has an appointment with a new immunologist next month. I hate waiting. He could really get sick in the next month. I am guessing we will keep him on an antibiotic until we go. I know it sounds wrong, but I kind of hope they find something. I am ready for a game plan and some other way to treat him. This is the third winter of this. I am tired of the same routine. We do the test, get the Pneumovax shot, and we wait. Well, we have had two shots and it is still the same. Monkey can't get anymore shots, so it is time to really find out why he can't maintain his antibodies. I am scared to know, but I don't want him to have to be sick all of the time. It broke my heart to watch him lay in the CT machine and not even shed a tear. He was brave and damn it, he shouldn't have to be. He is 4. He should be happy and full of energy, not tired and sick.

4 Years

I can't think. I can't breathe. I can't do anything.

How has four years passed? I look into his enormous, blue eyes in my favorite photo and wonder if he was ever really here. It all seems like a dream. For 90 days I had it all. Forget the NICU, the feeding tubes, the oxygen, and monitors. He was here and he was perfect. If you had asked me then, I would have said that was the happiest I had ever been in my entire life. I had two beautiful boys and regardless of what problems lay ahead, I loved them with all my heart.

How do you mark the worst day of your life? I took the day off work and had planned on getting a massage, but my regular girl is gone until the new year. Maybe I will schedule with someone else, but I can't explain it to a stranger. I will cry and it won't be pretty. I think I will spend the day with Monkey. Maybe make Christmas cookies and cuddle on the couch in our PJ's. I know I will visit Noah, but it is so empty when I go. It is just a hunk of granite and I don't really feel him there. I feel like I should take flowers and sit at his grave, but it is all so forced and doesn't help. What I want is him.

Noah sent me a present though. When he was in the hospital, I came across the band, Mercy Me. The words would literally drop me to my knees. The music was soothing and hopeful. It made me believe that I would be with him again after he died. It just happens that they are performing nearby. I don't think it is coincidence that it just happens to be on Noah's day. I am going with my two best friends. Maybe Noah knew I needed a way to feel him and they knew I needed someone to hold me up. Just maybe this is it. I am looking forward to going, but I am not sure how I will react hearing those songs again.

I have been thinking about how things have changed since he passed. He has changed every ounce of my being. I don't even know who I was before him. I have healed in many ways, but in others I am just as stuck as I was then. I wish I knew how to lift the weight of my guilt and grief. I wish I could forgive myself and see past my failures. My only job was to protect him and I couldn't. I know there was nothing more for me to do, but my body broke him and it was me who got him sick. Tomorrow would have been his surgery if we had gone through with it. I know now that had we done it, tomorrow would have been his last day and I wouldn't have been able to hold and love him while he passed. I believe God had his hand in that decision.

I look back and am so grateful for those blessed 90 days. For 90 days, I was the luckiest girl in the world. I was happy and whole. I ache for him now. I want to remember how the weight of his tiny body felt, how his hair smelled, and hear his tiny sighs. I pray that he is whole and free in heaven. As Monkey often tells me, we carry him in our hearts.

I love you Noah.

I'll carry you

"Mama, I miss my bubba. I want to cuddle and hold him. I will carry him. When will God be done with him?"

"Honey, you carry him you heart."

"I know, but I want to hold him in my arms."

"Me too."

Hope

Monkey and I went to church today. I wavered back and forth most of the morning before deciding to go. Right now I hate new things. As I walked in the door, we were greeted by an acquaintance I have met through other friends. She was warm and welcoming. As we made our way to the sanctuary, many more welcomed us and made sure Monkey had enough crayons and toys to make through the service. Monkey attends preschool at this church and it was awesome to see how these strangers to me had embraced my dear son. It felt good and warm. I felt not so quite uncomfortable in my own skin.

The sermon was about fear and faith today. Fitting if you ask me. It was a contemporary service with lots of current live music. Monkey loved it. He danced and hugged his Mama as he listened to the music. Faith is tough one for me. I am not sure how to have it in light of my recent losses. They spoke of gratitude. I am grateful. I have a beautiful little boy who holds my hand and tell me he loves me while I contemplate our next move. God and I aren't quite back on good terms, but today was a small step to something more. Maybe I will find answers and maybe I won't. Either way, it was nice. I think my soul needed nourishment and maybe just here I will find it.

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.