Alone

How can you be so alone, yet surrounded by all of your family? We did the family dinner thing tonight and then took the kids trick or treating. Why was there not alcohol? I am not much of a drinker, but if I were to become one, it would be now.

My family is well meaning. They are just the type who don't really talk about what is happening. They just neatly sweep it under the rug and pretend that it is not happening. Great for them. Shitty for me. It is exhausting to play that game. I do the holiday family things because that is what I am supposed to do.

Apparently, my shitty mood rubbed off on Monkey. He also seemed none too happy to be there. He would have nothing to do with costumes so he went out as himself in a football jersey. Oh well, he did finally have a good time once we got started.

We took the kids around the neighborhood. The neighbors would look at the twins (they were bananas, very cute) and then at Monkey. They looked confused trying to figure out why twins seem so prevalent. They would look at my niece and nephew and then at Monkey and that look would come over their faces. The look of recognition that he is the boy who lost his brother. They gush over the bananas and look at me with the look. I could scream. Instead, I just smile and tell Monkey to say thank you.

How did it all get to be so fucked up? How does my husband sleep at night knowing what he is doing? I miss him. I try to have fun for Monkey, but really I just want to cry. I just want my family back. At least the part that is possible to get back.

Random Thoughts

I haven't had much to say lately. I'm here on auto pilot. I am trying to not to think about my current situation so much. Maybe I a just avoiding the inevitable or I just think that maybe more time can heal. Whichever I am still here waiting on my best friend and partner.

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We had an EI appointment today. At times, I feel that I must truly live in the middle of nowhere. I don't really, but our EI people seem so far behind those that I read about. It is frustrating to only have a few visits each month and no one is really offering any meaningful exercises to help with feeding and speech problems. It just doesn't seem right. I understand that there are kids with much more severe problems than Monkey. I know those other parents desperately want these resources for their babies (I was one of the them with Noah). I now stand on the other side. Now I stand with the child that is slightly delayed, but not receiving all the services he could because there is a lack of funding.

They went over his sensory profile today. His deficits contradict each other. That doesn't make sense. Either way, I don't think it matters. I know what his weakness are. I just need some help in addressing them. Monkey has a hard time holding his attention on a activity that he didn't initiate. That makes our visits difficult. I learned today that he needs a physical activity before a sit down one. Shouldn't the EI have figured that out first? I really don't know that these visits will help. They bring puzzles each time or picture books. We do these things on a regular basis. What else should they be doing? He can do the puzzle. They lose his attention because he is bored with their activities. I am looking for things to help develop his muscles so he can eat and speak more easily. I know that words are there. He just really struggles to get them out.

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So Halloween?? Monkey may be a Monkey or a Skunk. Honestly, he doesn't want anything to do with any costumes, so he may just be himself. That is ok. I am not such a big fan of the holiday anyway. We are taking my nieces and nephew trick or treating. It should be fun. I am putting away the fact that it is another holiday that Monkey's Dad won't be spending with us because he is uncomfortable. Oh well...

New Beginnings

What goes through your mind as you jump off the cliff? I have laid out multiple paths to take, yet am too scared to make the leap. How do you convince yourself to take the first step? I am looking into schools. I am ready for a change, but I just don't know what is the right choice. I want to do something with my life that is fulfilling. Something to give Noah's life some meaning. He inspired me and yet here I stand stuck in this shitty place. I am not honoring his life and that is wrong. I may not be able to save my marriage, but I can take control over me. If any time was right for this, it is now. I am going to take a deep breath and will my feet to move...

Coming Home...

Two years ago today, we brought Noah home from the hospital. We loaded him up, hugged our beloved nurses goodbye, and we made the 2 mile drive to our home. It was terrifying and thrilling all at once. I had to figure out the car bed and how to position him just so. There were no monitors, oxygen, or tubes. Just Noah in his modified car seat and our instructions to care for him. Like that could be written on two sheets of discharge paperwork. That is almost funny when I think about it now. We spent a month learning to care for him and they gave us two pages of instructions.

Our families were waiting with Monkey when we returned. I remember standing there holding Monkey and my husband holding Noah. We just looked at each other like "now what?". It was a little anticlimatic, I think we thought fireworks should shoot off or something. It felt like the greatest accomplishment of our lives and we were just standing there.

This was the beginning of the scariest and most wonderful two months of my life. Bringing Noah home allowed us to discover what he liked, disliked, and to begin to care for him without all of the nurses watching. It is nerve racking when someone is always telling you how to do it. They make you feel like you are going to break him. We discovered that he loved his jungle and to sleep on your chest. His sats were best when sleeping on us. We were very creative in giving him a normal experience. We put him with Monkey to play even though he couldn't move well. He love being with his brother. We read him books and gave him plenty of things to look at.

I wish I could go back two years and relive this time. This was the best time with Noah. I miss him so much.

Signs

This journey I am on, where is the map and tour guide? How do I know if I am going the right way? That is the scary part of dead baby land. There are no obvious signs posted to let you know that you are headed in the right direction. Nevertheless, the signs are there. They are just subtle. If you look too hard, you miss them completely. It's when you least expect it that they are there. I find fleeting moments of peace every now and then. These are my signs; a thought, a lost memento, a look from a stranger that seems eerily familiar, a random hug from Monkey. In the darkest moments, I find these subtle signs. Sometimes, I feel Noah with me. His gentle force guiding back to the light. I am trying to slow down and listen. In the beginning, I missed so many signs because I so desperately needed them. Now, in the early light of the morning, I feel him. He propels me forward to live my life and love those around me. It has been almost two years, yet I am so very little into this journey. I don't know where it will take me, but I am listening, looking, and feeling my way along. The signs will find me when I'm not expecting them. I will open my heart so I can feel Noah's love.

Gratitude

I am tired of being sad...I read what I have written and quite honestly, I am a downer...Yes, things do suck right now. No, I do not have a plan in which to make them better, but I can choose the attitude in which I approach my life. Several years ago, my mother gave me a gratitude journal. It was so simple, yet a tool in which to look back upon and truly see what matters. The directions were to write down 5 things each day for which you are grateful. I think in the face of heartbreak I have forgotten how blessed I am. I am grateful for so many things:

My family's unwavering support and love of myself and Monkey even when they do not understand my choices.

Good friends who stand shoulder to shoulder with me when there are no words.

This community I have found here that gets it. They get that after almost two years, I still hurt and miss Noah like I lost him yesterday.

I am grateful for a job where I can go for a few hours each day and no one really knows the details of my life. Very rarely, do I get the look. Most don't know. Maybe that is dishonest, but I just can't take anymore judgement in life.

Most of all, I am grateful for Monkey. He is my light. He is guiding me through this disaster that is my life. He loves me unconditionally. It is me he cuddles up with each night to read and snuggle. His giggle is contagious and he has a very mature sense of humor for a two year old. I am grateful to wake up (this morning) to his mischievous smile while standing with his PJ's unzipped to his diaper. The smile breaks and he says, "banana?". That is the reason to get up each morning and make it through another day. It is a reason to try (not always successfully) to be present each moment while I am with him. He is amazing.

So I am trying to be positive. At times, it feels hopeless, but there is truly so much to be grateful for. I am lucky. Look at what all I have.

One breath at a time

I am here holding on. I am trying to survive one breath at a time. I feel like I am back standing in that hospital room trying to figure out how to say goodbye to my son. This time I am trying to figure out how to say goodbye to my husband. The unknown is so scary. I have been with him since I was 17. I was just a kid and I have never been on my own. I can do this. I just need a plan. I just don't know where to start. Everything is just so out of control.

Thank you for all of your thoughts. It means more than I can say. Just to know someone somewhere understands and does not judge.

Thank you.

I am a failure

I want to die. It would be easier than this. I can't take this unbearable pain any longer. My baby is dead. My marriage is over. Monkey is cursed with this terrible life. I am a failure. I can't do anything right. He says he doesn't really want to go through a divorce, but he doesn't have it in him to work on it. My heart has been ripped from my body one more time. It was put back together after Noah died just well enough for me to love Monkey. How do I do this? Everyone I love leaves in one way or another. Am I being punished? Am I a terrible person? He was supposed to be coming home. Now he isn't. I can't breath. My soul is broken.

Of course, I will put on my happy face and be there for Monkey. How did I do this to him? I love him more than life and I can't protect him from this. I am a failure as a mother. I couldn't keep one alive and the other has to grow up in this mess. I am so sorry.

Home

Two years ago today, we left Children's Mercy and headed home. Well not home exactly, but back to our local hospital with Noah. I left with the news that we should be contacting hospice and with no prognosis for my child's life, but it was the first time in weeks that I felt like I could breathe. I had every hope and dream for Noah crushed while at Mercy, but for some reason, going home gave me a new perspective and hope for Noah. We would give him the best life we could.

Two days proceeding this trip home, our medical team finally answered our questions. We had asked and pushed for some answers as to Noah's diagnosis for weeks. They avoided us and kept telling us they were waiting on more tests. That day we waited for rounds ready to pounce on anyone in a white coat. We wanted answers. We desperately wanted some course of action in healing our child. I was so naive. I still believed. The attending, the only doctor I met in our entire stay with any compassion, told me there was no prognosis. That Noah had polymicrogyria. It is a rare brain abnormality that causes the brain's surface to be bumpy. It affected Noah's muscle tone, his ability to suck, swallow, and gave him a soft airway (tracheomalacia). They actually told me they had to look it up in a book.

That same day, Noah began having apnea spells. He was actually having seizures, but for some reason the doctors didn't believe us because his EEG's were normal. The spells were terrifying. The alarms would sound and he would turn blue. The nurses would rub his back, flick his feet, and eventually bag him to get him to breath. The final straw for us was when we asked why he was not on seizure meds. The nurse looked us straight in the eye and told us that they would give it to him because what could it hurt. He wouldn't survive anyway. It took us less than a minute to start asking about a discharge home.

To end one the worst days of our lives, our neurologist compared my son to a tree. We asked him how long he thought Noah would live. He told me if he looked at ten trees, he couldn't guess which would die. That was it. If I could have found a large object, I would have thrown it.

Noah was life flighted back to our local hospital two days later. It is one decision that I have very little regret about. The nurses prepared his crib with decorations and placed a sweet angel bear for him to snuggle with. They love him. They held him and talked to him. They cared what happened.

The only positive from our experience at Mercy was this. It is the most beautiful, generous gift I have ever received. I can think of nothing to repay her for what she gave me. They are more than pictures. She gave us a chance to be a family. To hold our boys together and not worry about hospice and feeding tubes. We were her first family to photograph and you would have never known. She handled the situation with grace and professionalism. She didn't flinch when she saw Noah and I didn't feel pity when she looked at us. I felt love. She is amazing and talented. I hope someday to thank her.

Trust

How do you ever really trust someone who betrayed you in the biggest of ways? Does it happen over time? Do you just wake up one day and suddenly believe in this person again? Is it a choice? If I make that choice will these feelings of hurt and anger subside? Does learning to trust again go hand in hand with forgiveness? If so, how do I forgive when still feeling the above mentioned hurt and anger? What if secretly, I want that person to suffer just a fraction of the pain they have imposed on me? Does that make me a bad person? I just don't know how to do this. I don't know that they are truly sorry and that makes it even harder to forgive. How will I ever truly feel safe again? How will I ever have faith in that person? I just don't know what to do...

Dreams

After reading this post over at Glow, I had this dream. I was on my way to Noah's burial at the local cemetery. At first, I was leaning over a headstone. I was putting my name on it. This seems creepy, but in my dream it was like I was telling Noah that I was going to join him someday. That my place would always be beside him. Sadly, in my dream my husband and I still were fighting. That part was not so peaceful. As my dream progressed, I began walking through the paths of the cemetery. They were full of poppies. It was beautiful. The dream was sad, yet when I woke up, it felt very serene. Rarely, do I ever get a sense of peace about Noah. This was a welcome gift.

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Still no news about Monkey. The waiting sucks! I keep telling myself that if it were serious, I would have heard something by now. Am I totally naive to think this way? I am just trying not to make myself crazy. If something is wrong, it is just one more blow. I don't know how much more strength I have. Some days, I feel as if I have to scrape myself up off the floor in order to go to work and take care of Monkey. I shove it all to the back of my mind and try to forget about it for awhile. Monkey doesn't deserve anymore hardship. His little life has been hard enough. Please God, let my little boy be okay.

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My husband and I are struggling to find common ground. This is so hard. I am so angry and hurt by his actions. He tells me that he is really screwed up over Noah. I have sympathy, but then I am just pissed off. Does he think he is the only one with issues over losing Noah? I have issues with it and I just didn't give up on our life. He says he wants this to work, but I don't know if I really believe it. The only positive I see in the situation is that we are beginning to communicate better. I am afraid to walk away, but I know that I can't continue on this path either. He told me that he feels that he never felt that he could openly grieve for Noah. He felt that all the attention went to me. I don't know what to do with that resentment. He may be right in some aspects. I had the support of my doctors and friends. His friends just acted like it didn't even happen. His family was supportive though. It is just different for men and women. I think we resent the way each of us grieves. I know we must find a way to accept that our feelings are very different and our reactions are okay. I love the man I married. I am sure he is still there somewhere. It is so lonely without him. I miss my best friend.