Happy New Year

It being New Year's and all seems to have many writing about their accomplishments or lack there of lately. It has me thinking about the last year for me. On the outside, I feel like I haven't done much, but when I am really honest there a few things that I did get done.

I went back to work, granted it is only part time, but I did it. That was no small feat. After being home for 18 months, it was hard to transition back to the work world. I started this job with no confidence and not sure what I had to offer. I still don't think my work is 100%, but I am doing my best with all of the drama and baggage that keeps weighing me down. When I wrote my resume, my previous work experience seemed irrelevant. I am not that girl anymore, but I couldn't seem to find a space to explain what I have learned from my baby dying. After 9 months back at work, I actually like going. It is a few hours of peace and quiet. I don't have to discuss my personal life with anyone if I don't want to and it has been good therapy. I actually have sent my resume in for a full time position. We will see what happens.

I put Monkey in daycare. For most, this is not an accomplishment, but for me it is huge. Leaving my only living, breathing child with someone not related to me is the scariest thing I have ever done. It is relinquishing control and that is not my strong suit. I still don't like it, but he seems to enjoy the social interaction and I keep telling myself it is only 1/2 day. If I should land the above mentioned job, we will tackle full time daycare then.

I have survived 9 months on my own. I have never lived on my own or had to be responsible for another human being by myself. It has been the hardest 9 months in someways, but in others I feel more confident and less dependant knowing I can do this. I am self sufficient. Monkey and I are a great team and we are making this work.

In the next year, I hope to achieve many things. I don't want to make resolutions because it is disappointing when you fail to achieve them. I really just want to start the new year with a change in attitude. I am ready to start living. I want to enjoy the many things I have to be grateful for. I know I will have days that the grief kicks me in the ass, but I have decided that is okay. I am not going to fight it anymore. I am just going to welcome it like an old friend. Those moments will offer me time to reflect on Noah and my former life. I am going to learn from my mistakes and stop living in fear. This year, I will act on what inspires me. I will seek out people who make me feel good and I will give back in honor in all of those who helped me in the darkest of times. Most of all, this year, I will be happy.

I wish everyone a wonderful New Year and hope that all of us baby lost mama's can find our way on this journey to find ourselves and happiness.

Show and Tell

Thanks to Cara for this post. This crystal turtle is the gift I am most grateful for. It was given to me by my brother and sister-in-law. It brought me to tears to have them remember Noah. The quote is quite fitting for my current situation and my new goals for the new year.

Make Each Day Count

The race in life is not how fast

you travel on your way,

For like the turtle, you can win

By savoring each day.

At the end of the road

I think back to a year ago and I don't recognize that life. The only parts that are still the same is my grief for Noah and my love of both of my boys. I actually thought M and I were going to figure this losing a baby thing out. I thought we were going to try to have more children. I stopped the pill. I had the pregnancy tests in the cabinet. I with all of my heart thought we would have another baby. I thought I would be pregnant now, not alone and heartbroken.

He says he wants to work it out. I don't know if I believe him. He is so mean and unloving when I talk to him. He crushes my spirit when I am with him. I am trying so hard to find myself. I want to figure out who I am now. I have to be more than this. I am lonely, sad, and so very angry. How do you rise above that? I know he is struggling with his own demons, but at some point it comes down to what you choose. He has committed to marriage counseling and spending more time at home. We will see how it goes. I am not getting my hopes up.

I have set some lofty goals for the new year. I want to get healthy, both mentally and physically. I want to find my faith in whatever form that speaks to me. It may be church or it may be the peaceful quiet of the morning. I will find a way to make Noah's life matter. He was put here to teach me and I need to share what I have learned. I don't know exactly how, but I have a few ideas. I just pray that I have the endurance and the tenacity to see this through. I refuse to give in to being sad and depressed. I want both of my sons to be proud of their Mama. I am not a quitter and I want them to know it is okay to stare down adversity and follow their hearts. Whether M and I end up together, I still want these things.

Right now, I need some faith in myself. I am strong. I can do this. No matter, how hopeless I my feel today, I will not quit. I will find happiness, it is at the end of a very long, dark road. I just have to look up and follow the subtle signs along the way. Eventually, I will find the end.

Merry Christmas!

Monkey and Noah 2006

I'll be dreaming of my little elves this Christmas.

Merry Christmas!

Let it go

I am not a big country music fan, but I heard this song today as I flipped through the radio stations on my way home from work. Maybe it should be my new anthem as I start a new year. The words brought me to tears because I do stand at a crossroads and I am searching to find what happens next in my life. I have decided I get to decide this time. It is time to take control and stop just letting life happen to me. I need to stand tall and let the past be the past. I know that I will never stop grieving for Noah, but I have to forgive myself for how it ended. I made a choice. That is it.

Let it Go-Tim McGraw

I've been caught sideways out here on the crossroads

Trying to buy back the pieces I lost of my soul

It's hard when the devil won't get off your back

It's like carrying around the past in a hundred pound sack[

Today I'm gonna keep on walking

I'm gonna hold my head up high

I'm gonna leave it all behind

Today I'm gonna stand out in the rain

Let it wash it all away

Yeah wash it all away

I'm gonna let it go

Oh yeah I'm gonna let it go Oh yeah

Skeletons and Ghosts are hiding in the shadows

Threatening me with all the things that they know

Choices and mistakes, they all know my name

But I'm through holding in and holding onto all that pain

I know I know I know I've been forgiven

I know I know I know I'm gonna start living

Memorial

Noah's memorial service was two years ago. It was held in the church in which M and I were married. He deserved to have it held in a church, regardless of my failing relationship with God. The chaplain who baptized him and Monkey at he hospital performed the ceremony. It seemed fitting as he was the only minister who had ever known Noah.

I truly don't remember much of the service. Monkey, only 3 months old, lay asleep on my shoulder through the entire thing. I had been worried that he would cry and fuss, but Noah must have told him to sleep. I held on tight to him, hoping Noah could feel my love.

We played a slide show of photos given to us by the photographer with Now I Lay Me Down to Sleep. These photos take my breath away they are so beautiful and I wanted to share them with all who knew Noah. We also read his favorite book, Rainbow Rob. Noah used to look at the pictures and try with all his might to touch the pages. The book is about being different and accepting yourself, so fitting for my special boy. We ended the ceremony with a PowerPoint of photos and the song Hello, Goodbye. My sister in law found that song for us. She remembered it from years earlier, but hadn't realized the name in it was Noah. It was perfect.

Noah's ashes are buried in our local cemetery. We had a very short graveside service. It was so cold, much like today. I remember my Dad holding Monkey close wrapped in a blanket to keep him warm. What it must have been like to watch your baby bury her baby? My father is the strong, silent type who is your rock in a crisis. I remember is work worn hands holding my delicate child. I can still see the orchids that someone left at the burial site. They were beautiful.

My parents held a reception following the service at their home. The house was filled with friends and family. We had set out pictures and photo albums of Noah's life. So many never had the chance to meet Noah due to his medical issues. I remember feeling like I had to entertain and visit with each person. It was very surreal. I look back and it is like I was floating through a dream.

In all of the things related to Noah, I don't have any regrets about his memorial service. I wanted it to be perfect and it turned out just as I had wanted. It was a fitting tribute.

Missed Chance

Five days passed between Noah's death and his memorial service. I don't remember much of that time. I was still in shock and just too tired. It all feels like a dream, excluding a few parts. Noah passed early on Sunday morning. Someone got us to sign off on an autopsy so his body was sent to a town a few hours away. I really try not to think to much of this because it makes me sick now when I think about it. They had to take him elsewhere in order to do the genetic testing. At the time, I thought I wanted this. I so desperately wanted to know what caused all of Noah's problems. In the end, the testing wasn't done because the cells didn't grow that they needed. So I guess we will never really know.

Two years ago tonight, I visited the funeral home for the last time. Noah had been brought back. The director asked if I wanted to see him before he was cremated. My insides were screaming yes and my mind said no. I told him no. What kind of mother am I to not want to see her baby again? I was just so afraid that I wouldn't be able to leave. Leaving the hospital was the hardest thing I have ever done. I didn't have the strength to leave my baby one more time. I regret that decision now. I think I was afraid to know what he would look like following the autopsy. I was scared. I would give anything now to have seen him one more time. A chance to see his angelic face, his long, delicate fingers, and those bow lips. I know he wouldn't have looked like my Noah, but it would have been a chance. I have always had issues with viewings at funeral. The image sticks with me and I see that when I think of the person. I want to remember him alive. I guess I am still torn on the matter.

Noah was cremated that night. My stomach turns when I think about it. I know it is just a shell, but that was my baby. They asked if we wanted his clothes and his blanket back. I remember thinking that he needed his clothes so I asked that he be wearing his striped sleeper. Why did he need clothes? I was just so irrational at the time. I will admit, I found that same sleeper on ebay and impulsively bought it one day. When it arrived, I realized I was simply reaching for something to remind me of him. I did ask for his blanket back. I wanted something to hold. I wanted to smell his sweet smell. When they returned it, I buried my face in the blanket only to be met with the smell of smoke. Cigarette smoke. I just collapsed and cried. My last chance to inhale him and some asshole had to take his smoke break around my lifeless son. I know it is just a blanket, but that feeling was devastating. I desperately needed something to hold onto that was his. When we returned home, my mother in law washed it in the baby detergent and returned it to me. Sometimes, I still sleep with that blanket. I just hold it and remember my boy wrapped up.

The decision of whether or not to see Noah one last time still haunts me. I did what I felt I had the strength for at the time, but I missed my last chance to see him. I may always regret that choice, but I guess I must forgive myself. He wasn't actually there anyway. Just a shell, not his soul.

Noah

Hello, Goodbye

Where is the navigator of your destiny
Where is the dealer of this hand
Who can explain life and its brevity
‘Cause there is nothing here that I can understand
You and I have barely met and I just don’t want to let go of you yet

Noah, hello, goodbye
I’ll see you on the other side
Noah, sweet child of mine
I’ll see you on the other side

And so I hold you tiny hand in mine
For the hardest thing I’ve ever had to face
Heaven calls for you before it calls for me
When you get there save me a place
A place where I can share your smile
And I can hold you for more than just awhile

-Michael W. Smith

Dear Noah,

Two years passed since I have held you in my arms. They ache to hold you. I close my eyes and I can feel you. I can smell your sweet, baby smell. I can see your bright blue eyes looking up at me. I miss you.

I am so proud of you. When I pause or hesitate to mention you, it is not because I am not proud. It is because not everyone is worthy of you. I hope you understand that sometimes your Mama simply cannot take the barrage of questions or the uncomfortable silence. Even when I do not speak your name, you are always in my heart. My love is always there. It is the constant in this crazy world.

Monkey misses you. He loves your sweet angel kisses. I know you visit him in his dreams. I can see that little smile creep across his face as if you are telling him secrets. Please watch over him. Give him strength and love so he can navigate this world. I know the two of you are meant to be together and one day you will again. Your bond transcends time and space. It will always be. The love of brothers especially twin brothers is unbreakable. Monkey will always hold you in his heart. As he grows, allow him to find his way and to make peace with the space your death made in his heart. Help him be whole even when a part of him is missing.

Please know that your Daddy and I love you with all of our hearts. I know he misses you terribly and struggles to find a way to deal with losing such a huge piece of his life. Daddy's want to protect and he couldn't protect you. Give him strength to know he did all anyone could have. He used to lay on the floor in your room and just watch you sleep. He missed you while he was away at work and needed that time to just drink you in. You were your Daddy. Same blue eyes and blond hair. You would have looked just like him. We used to say you took after him and Monkey after me. It is hard for a Daddy to lose his boy.

Noah, I am so sorry for all I couldn't do for you. I am sorry my body let you down. I am sorry I struggled to connect with you in those early days. I was so afraid of hurting you more that I already had. I found my place with you though. It was with you curled up on my chest, sleeping peacefully. I could take in all of you in. Your sweet, soft cheeks against mine, breathing peacefully. Once we finally got home, I cherished our afternoon naps and our cuddle sessions. I am sorry I got you sick. I wasn't ready to let you go. Please forgive me for making you stay if you were ready. I needed more time. We did our best to care for you. I hope you knew how much we loved you and still love you. I wish I could take a snapshot of all your moments. It was so fast. We tried to fill a lifetime into 3 months.

Noah, you are such an amazing child. You defied the odds and survived 3 wonderful months. When they said that you couldn't understand, you proved that you did. The first time I saw you turn your head to my voice, you showed you knew me. You taught me the meaning of unconditional love and not to take a moment for granted. Life is precious. You are a miracle and I thank God everyday that you were in our lives.

Please come visit me from time to time. I know you are busy playing, but take a moment every now and then and let me know you are okay.

You will be in my heart forever. I love you.

Mama

Tonight

Two years ago, I carried my baby through the doors of the ER looking for a miracle. The apnea spells were increasing and his cold seemed to have settled in his chest. I don't know what made me decide it was time to go. Nothing alarming had happened. I just had a feeling. Little did I know then, what that feeling was trying to tell me. I look back and at the time, I just couldn't see it. I did not want to see his declining health. Looking at his last picture, I can see it in his face.

Earlier in the day, M and I had run a few errands. I remember standing in line at the store and I told him I was scared for Noah. Did I know? We shrugged it off and resumed our "everything will be okay" attitude. We had trained ourselves to push the fear aside so that we could take in every moment of Noah's life. Fear is crippling and there was not time between feedings, meds, and chirping alarms for fear.

When we got to the ER, the doctor told us we had done a good job with him. Was he trying to tell me that this was it? He never actually said that there was nothing else to do. The nurses began running test for RSV and Influenza. They never could get an IV started. Noah was so dehydrated that they couldn't find a vein. The nurse from pediatrics came down to try to put an IV in his head. She couldn't get it. They just told us they would get it later.

It took hours before we were taken upstairs to pediatrics. During that time, he had several apnea spells and remembering thinking that the nurses weren't rushing to help. I was still holding him, stimulating him to breath. I remember changing his diaper and he had just a small amount of diarrhea. I now know that his body was shutting down. They did a chest x-ray and it confirmed that he had pneumonia.

I was scared while in the ER, but defiant that my child was dying. Apparently, they did not want to break that news to us, so they let us believe that he would be okay. I had packed for the hospital like we would stay for awhile. I brought extra clothes and blankets. I had packed formula and all his meds. I was prepared to fight for the long haul. Noah was trying to tell me and I just couldn't give up.

Upon our arrival to the pediatric floor, the apnea continued. I don't know how long it was, maybe 30 minutes to an hour, and they couldn't revive him. I remember standing next to the crib, watching the respiratory therapist bag him. The nurses asked if we wanted to call our family. I was in shock. It wasn't really happening. I honestly for a brief moment did not understand that I was losing my sweet boy. Someone called our families and our pediatrician. They continued to bag Noah and I can still feel how hard his belly became from the air. I remember watching, knowing they should stop, but I just couldn't bring myself to say the words. Our pediatrician arrived and very gently told us it was time. They stopped bagging, removed the NG tube that had supplied his nutrition his whole life, and handed him to me. I sat in the rocking chair and just held him. M and I huddled over him, never taking our eyes from him. I was so afraid to miss a moment. I remember feeling like my insides were being ripped from me as he went away. His perfect bow lips became dark and his body cold. I kept wrapping him in his favorite blanket as if I could warm his body.

At 3:22 A.M. Noah lost his fight. I don't remember how long I held him. Eventually, everyone took a turn holding him and saying goodbye. Everyone, but Monkey. Monkey was not there when Noah died. He was home in bed. I wonder if he knew his life would change forever that night. We bathed Noah and dressed him in green striped pajamas with a giraffe on them. I swaddled him in his blue, star blanket and said goodbye.

I don't remember many details after that. Maybe is was from being tired or just the shock of it all. A piece of me died that night with Noah. The void in my heart is gaping and nothing can possibly fill it in. My whole world and everything I believed in came crashing down with his last breath. Here I am two years later, still standing in disbelief that my baby is gone. I continue to live to honor him, but it is no less painful and I am still searching for a reason. I have to believe that Noah is whole and healthy dancing in heaven or wherever we will meet again. We will meet again. One day, I will hold my son in my arms and do all of the things that were never possible for us.

Noah, I love you and miss you. You are always in my heart because you are apart of me.

Noah Michael

9/18/06 - 12/17/06

3 days

I want to go to sleep and not wake up til New Year's. I don't know how to face the next few days. My mind is tortured and my soul cannot find any peace. I look at Monkey and just want to bawl. It is an overwhelming mix of love, sadness, anger, and fear. I see him and I see his brother. I see what is missing. I just hold him close and try to feel Noah through him.

It hurts. I am drowning in this grief. I begin to think I can do this and it overtakes me again. This is just so unbearable. Part of me wants to deaden the pain, but maybe this pain is how I feel him. Maybe he will be closer to me if it hurts more. I just want him here with me.

I miss my baby.

4 Days

I have four more days. Well, actually less than 4 days. Noah died at 3:22 A.M. so the actual time usually sneaks up on me. I still don't know what to do. How do I honor my missing son who I miss so much? All just doesn't seem enough. I am tormented with this need to do something in his honor, but I am frozen without any good ideas.

Today is the day that would have been Noah's surgery to place his Mic-Key button. It is the surgery that would have killed him had we gone through with it.

Today is the day that my attempt to save my child may have killed him. Two years ago today, he had an apnea spell. All of my usual efforts did not revive him. I was sick with a cold. I really did think about it, but I didn't see any other option. I began breathing into his mouth. After two breaths, the color returned and he began breathing on his own. I remember collapsing on the floor knowing what could have been. I remember thinking so many disorganized thoughts. I wondered whether I should call an ambulance. We had a DNR so they would not do anything. I found my camera and took a picture of him thinking this could be my last. Today is the day that I finally called hospice. I finally knew that I couldn't do this alone. The almost death of my son was the most frightening thing I had experienced up to that time and I didn 't know if I could handle it if I was alone with both babies.

My sweet Noah. I tried to do my best. I wanted to give you every chance at life. I will never know if it is because of this day that you had to leave us. I am sorry. I just wanted so badly for you to live one more day. I just wasn't ready to say goodbye. I love you with all my heart.

Bad Day

It has been one horrible day. Monkey didn 't want to go to daycare this morning and let me know is full displeasure. I finally get him unwrapped from my leg to get to work only to have my babysitter call 30 minutes later telling me that he had an accident. What the hell? I am sure that my stomach dropped to my feet as a pictured all of the horrible things that could have happened. Doesn't she know better than to be dramatic unless it really is dramatic? He face planted into the frame of the couch and bit through his lip. It bled. It bled a lot. By the time I got there, he looked as if he had been in a fight and he definitely did not win. Fortunately, once the bleeding stopped, it didn't look so bad. In the end he was actually excited because he got to go to Papa's (his favorite place one Earth) and eat ice cream. I think he may have an escape plan now.



M came over this afternoon. He has offered to see another marriage counselor. I don't know if I have this in me anymore. He has broken every promise and vow he ever took. I don't know how to forgive that. He has hurt me and I just don't know if the damage is repairable. I just want to wake up from this fucking bad dream and it all be over. I just can't do this anymore. I am a wreck and he is just such an ass sometimes. I am so angry. He asked how I can think of divorce during "Noah's time". What the fuck? He is the one who has no respect or care for anyone else. I am dying as I sit here remembering that I now only had 7 days with him. That two years ago today, the apnea spells started. This was the beginning of the end.



7 days. I can't do this. Why is this still so hard? I know he is gone and I can't change it. Why is the hurt so much deeper and the anger still growing? I am alone and drowning in this pain.



It is just a bad day. Please tell me tomorrow will be better.

Who I am?

I look in the mirror and don't really recognize the person looking back at me. She looks familiar, but I can't quite place where I know her from.


I close my eyes and I can see the girl I used be. A little tomboyish and girly all at once. I was athletic and confident. I wasn't beautiful, yet was pretty. I was smart, controlled, and seemed to have it all together.


Growing up I always had a plan. I would go to college, get married, have kids, and live happily ever after. I did the first three. How did I go so wrong with the happily ever after part? Where in my plan was having my baby die and my marriage fall apart? I don't remember ever including that one. So much for the plan.

I don't want to wallow in self pity. I just don't know how to look in the mirror and see me. More importantly, how do I look in the mirror and like what I see? If grief is a journey, then I am totally lost.

I realized the other day that I don't even know what I like. I look around my house and it is furnished in a masculine way that my husband liked. Do I even like these things? My husband was a big Dave Matthews Band fan in college. I became a fan. Do I even like the music or did I just love the experience of the summer night air and the exhilaration of the concert with him by my side?

I look at myself and see a weak, scared person. As I became an adult, life just chipped away at my confidence. I know that I constantly beat myself up for all that has happened to me. I know that I couldn't have controlled what happened. I know that it is not all my fault. That is huge for me. It is not my fault. Maybe that should be my new mantra. Truthfully, my problems in my marriage are partly my fault, but the current situation is not. I did not make those decisions, he did. I have stayed and tried to save my marriage, but if it doesn't work, I can't beat myself up. I tried. I am a perfectionist by nature or maybe I'm not. Maybe, I just have an intense fear of disappointing the people I love.

It seems that I can never live up to anyone's standards. I have failed at almost everything I have done. I settled for a degree that I didn't want. I don't want to be a teacher, yet I have my degree in education. I have worked a series of jobs, that I have no passion for. They are a means to an ends. I don't know where my passion lies. The only thing that fires me up is taking care of my children. Where do I go from here?

I looked in the mirror and all I saw is a run down, fat girl. She is scared and has a hard time looking herself in the eye. I am so scared that others won't accept me, but really I can't accept myself. I don't know how. I want to be able to tell myself that it is okay to be lost.

I hope one day to look in the mirror and see a girl who is out to conquer the world. I want to smile and truly feel happy. I want to immerse myself in life and not question my every move. I want to follow my heart and not let my perceived expectations of others drive my actions. I want to live for me. I want to be a better me so I can be a better mama. I want Monkey to embrace life, not hide in fear of failure. I am going to start one small step at a time.
How do I get it back?

8 days

If I close my eyes, I can feel him. Just for a fleeting second, his soft skin against mine. I can see his huge blue eyes looking into my soul. I can smell his sweet baby smell after a bath.

My arms ache to hold him. I miss him so much. How has two years passed without him?

I love you Noah.

12 Days of Noah

12 days. That is how many more days I will torture myself until THE DAY. What do I call the day? Noah's day? Noah's day should be happy and full of good memories, not memories of his last breaths and sweet cuddles. I have heard people call it an angelversary. Honestly, that makes me want to throw up. So what is it? I don't have a word for it. It is the day that my entire life was ripped apart and I lost my sweet boy. It is a day of the year that I dread and once it is here, I will feel I didn't do enough to honor him. Do I go to work? Monkey has an EI appointment that day. Do we attend? Is it dishonoring him to carry on like any other day?

Last year, we took Monkey to breakfast, toys to the hospital, and out to see Noah at the cemetery. After that, I decided we would Christmas shop because I just couldn't be sad. Last year I had M to hold my hand.

This year, I will go to work because I am out of sick time due to Monkey being sick. They don't have a leave for the anniversary that your baby died. I don't have the energy to ask for the day and have to explain why. I don't really talk about my personal life at work and don't plan on starting now. So, I will go. I will then pick Monkey up from daycare and take him to visit his brother. It is cold, so the visit will be short and I will sit there in silence wondering why I don't feel closer to him in the place his remains lay. I will look for words to convey my love and grief, but they will never be enough. I will then go home to sit and feel guilty that I didn't do something better to honor him.

I have ideas of things to do, but none are really good enough. I did buy an angel memorial ornament for the Memory Tree at Hospice. Maybe I should brave the store and take toys to the hospital. I could bake cookies and deliver them to my favorite nurses. Maybe I will finally watch the video I have from Noah's life. I have never watched it and am not sure I can. I could light a candle and say a prayer. None of it expresses my feelings. It all feels empty. M is not here and the rest of the world has forgotten my loss. Forgotten his life.

What I want to do is very out of character for me. I want his name tattooed on me. I want to see it everyday for the rest of my life. I am not a big fan of tattoos, but for some reason I am drawn to this. I have considered his footprints or a turtle, but I think I just want his name. Where to put it? I don't really know. I considered my foot or the inside of my arm. I don't necessarily want anyone else to see it. Maybe white ink, as it will be subtle. I am not sure I can go alone, but I don't know who I would trust that experience to. I don't like pain, but the pain seems welcome. A way to feel him.

I don't really know what the day will bring, but I can only hope I find a way to truly honor Noah. For now, I will begin the countdown, pray for peace, and hope to hold him in my dreams.

Fireproof?

Can it really happen?

I can only hope.

Maybe I need to find my faith.

Why do they get to decide?

I have a good friend who is fighting her insurance company over a vaccine that can keep her daughter from becoming quite ill. The company is denying her because of her age (she will 3 next week). Her daughter was born with hypoplastic left heart syndrome and faces what we all hope is her last surgery in 6 months. The vaccine is Synagis. Monkey is receiving this medicine and our insurance did not even bat an eye in approving it. The only reason he qualified is because is was 5 wks early and a multiple (I find it ironic that this still carries weight considering Noah is no longer with us). He doesn't really have a chronic health issue that would typically be considered for Synagis. We are just very lucky that our insurance company is very lenient about this vaccine. This is our 3rd and final RSV season that we will receive the shots.

My friend has appealed and had it denied. How can an insurance company override the decision of the pediatrician? He felt it was in her benefit to receive the shots, yet the insurance company doesn't want to foot the bill, so they just deny it. It has gone on to the next level of appeal, but in all honesty the RSV season will almost be over before anything is decided. This is so wrong. I don't think a money hungry industry should get to decide whether a treatment is needed. That is the doctor's place. I also find it ironic that the insurance companies push you to use their in network doctors, but do not actually trust their opinion if they do not want to pay a claim.

I know some will say that if she really needs the shots, the family should simply pay for them. The shots are over $6,000 a shot for a child her age. With six shots a season, that is $36,000. Who has that kind of cash lying around? It is not feasible for a normal, working family to afford such things without their health insurance.

There is so much talk about health care reform (and I am not expert), but all I hear about is the cost of premiums. I know that this is an issue, but what about the individuals not receiving care that doctors deem necessary? I know that children with Medicaid in our state who are recommended to receive the shots are not always approved. Just the other day a Mom was at our pediatricians office with her premature baby and had been denied by Medicaid. I guess the insurance companies would rather take a gamble with a babies health and just pay the hospital bills.

It all just seems wrong. While I am grateful for our insurance company paying for these, we have ran into other items that they will not pay for. Monkey was referred for a cranial remolding band as a baby due to plagiocephaly and torticollis. They would not pay the $1500 the band costs because they deemed it cosmetic. Plagiocephaly can cause vision and other problems. It is more than cosmetic. We were fortunate that we could afford it. They also have limits on OT, PT, and speech therapy. We have used all of these services or still are for Monkey's developmental delays. My ability to pay out of pocket for these services will affect my child's future. I just don't get how someone in an office somewhere gets to decided what is best for my child. I will definitely be paying more attention to these topics than I did before.

Where is the Sunshine?

I look at my marriage disintegrating before my eyes and realize it is my dreams that I am fighting for so fiercely. M has stripped away all that I thought and hoped for my future. That is a lot to take in. There will be no family dinners, holidays celebrated, babies crying, or quiet moments in bed together before our children stir.

They say in divorce that you must mourn just as you would for a loved one. You do mourn, but it is different. Death is final and most of the time you have no control over it. Divorce is promises broken, rejection by the one you love most, and the reality that nothing in your life is what you thought it was. Losing Noah is by far the hardest thing that I have dealt with, but losing my marriage has taken away my ability to trust and look to the future. Is there life out there for divorced, babylost mama? I have enough baggage to scare everyone away. I can't see my future other than being alone and sad.

M remains vague about our future. No, he has not filed for divorce, but he is not here either. I am alone during the hardest part of the year. I put up the tree and the rest of the Christmas decorations. It all just feels empty. He is not here. Our home is not filled with laughter and happiness, only grief and heartbreak.

I keep holding on to the pieces of the life I knew. Some may see it as foolish, but I really do want my marriage and family together. I know that I can't bring Noah back, but I can have enough faith to wait out the storm. I just keep hoping for the break in clouds, to feel the sunshine on my face.

Marriage and Grief

I feel very alone when I think about Noah now. The experience seems uniquely mine, but M was there every step of the way. He was a good Daddy to the boys. I think he was overwhelmed as much as I was. We both did what had to be done and I don't think we gave the consequences much thought at the time. I don't think we even had any idea of what was ahead of us. I know we didn't expect to lose Noah so soon. I truly thought that I would get at least a couple of years, not months.

Our relationship has been rocky at times, but nothing that seemed out of the ordinary. We got together when we were young and had a difficult time growing up together. It seemed, or I at least I thought, we wanted the same things. We both had good jobs. We bought a nice house. We were living a pretty charmed life. Maybe that is why our relationship seemed okay at the time. Things changed when I got pregnant. We had been trying for quite some time, but it is like when it became a reality, he freaked out a little. I felt disconnected from him during the pregnancy. I was so in love with being pregnant that I just let it go. I figured he was just scared.

Now, I look at him and I don't really recognize my husband. Losing Noah has definitely taken a toll on him. I truly feel he is majorly depressed. I suggested today that he take something. He agreed to look into it so we will see what happens. I don't know where I want this to go, but I do still love him. I still believe in the vows we took 6 years ago. I know I am the fool for waiting while he acts like our marriage is disposable. I just think it is something more that is causing him to do this. I am not claiming to be totally the victim. I have my faults just like everyone else. I know I was difficult to live with at times.

So here I am waiting. What is the harm? Divorce is just so final and I am not sure I can be the one to take that step. I know he is unsure. He has dug this hole and now he can't figure out how to get out of it. I am trying to be the bigger person and help, but it so damn hard. I have no patience so I tend to get angry and hurt by him. It just seems like an impossible situation.

As Noah's day nears, I wish he could connect. He is the only person who gets it. He is the only person who loved him as much as I do. I know he misses him and carries his own guilt. At times, it is hard to see past my own feelings to help him with his. I wish there was some place for Dads of lost babies. Their needs seem to be different that ours. Does this place exist? I hope for his sake that he finds it.

Decisions No Parent Should Make

Once darkness falls, my mind begins filling with all that could have been. I know it is because I finally let myself go there. I let myself feel all of the sorrow, love, and pain for my lost son. Sometimes, all I feel is guilt.

I try to imagine Noah at Monkey's age right now. What would his life be like? Would it have any quality? When Noah was alive, my biggest fear was prolonging his life if there was no quality. Who I am to make that choice for him? I kept telling myself quality was more important than quantity. Maybe that was just my way of preparing myself for the inevitable. I knew he wouldn't be with us forever. That doesn't mean that I didn't dream of him growing up. During those long week's in the NICU, I tried to imagine him and Monkey. I knew he would never crawl or walk. I had decided that we would move. Buy a house with a large playroom just for my boys. I imagined their first day of kindergarten. I knew Monkey would look out for his little brother.

When I imagined all of this, I always blocked out the negative. I think of it now and see so many different things. First, what would have his development have been like? Would he ever be able to communicate? Would he be able to eat or would he always be tube fed? The seizures were my biggest fear. Would he suffer from them all of is life? Would he be in pain? I also think about the responsibility that would have fell on Monkey. Would he have grown up too fast having to be Noah's protector? People are cruel. I can only imagine the terrible things people would say about and to my boys.

I feel like a horrible person when I admit that I was very scared of Noah's survival. I wasn't scared of the challenge of caring for him. That was the easy part. I was so scared he would suffer. Scared he would have been suffering if we went to extreme measures to prolong his life. That would have been terribly selfish of us. On the other hand, who are we to play God with his life? Was it really our choice to not put him on a ventilator? Deciding on the DNR was the hardest choice I have ever made. We made that decision early in his life. We knew the odds were very low he would ever come off of it if he were to need it. I couldn't imagine that as life. That seemed very selfish because it would have been for us not him. I am not saying that someone who chooses that option is wrong. It just wasn't the right choice for us and Noah.

Many times, I think about that choice at the hospital that fateful night. They bagged him for a very long time. My insides were screaming to go with the ventilator, but I think I knew he was gone. I truly do feel like I would have just been prolonging his pain. The ventilator would have been for me. Honestly, I don't know that I could have made the decision to take him off.

I am trying to let go of this stuff. These are the things that haunted me during his life and now after his death. No matter what, they were choices that no parent should ever have to make for their child. I felt that all I could do is what we felt best for Noah. It doesn't make it any less difficult though. I can only hope I made the right choices and that he didn't suffer.

It will be two years in a few weeks. I can feel it. It is like the air is slowing being sucked out of the room. Everything either sends me into a rage or brings me to tears. Every now and then, a tender moment with Monkey sneaks in and takes me by surprise, which winds up making me cry. I hate being out of control and this grief is out my control right now. I am just trying to go with it and stop apologizing for it. I lost my son. I am allowed this. I can't help that everyone else chooses to ignore it and is uncomfortable with my anger and sorrow. I don't have the energy right now to worry about them. They will just have to fend for themselves because right now I am just focused on making it through the next few weeks. I want to think of him and only him. I miss him so much every part of me aches to hold him one last time.

Brotherly Love

Monkey and I went to see Noah yesterday. As we pulled into the part of the cemetery where Noah's ashes are buried this is how the conversation went.


Monkey: "Hi, Bubba".


Me: "Yes, this is Bubba".


Monkey: Begins blowing kisses to Noah's headstone...


Me: Choking back the tears the are going to break through. "That is so nice of you to blow Bubba kisses. They are floating up to him in heaven. He sends you his love also. He visits you in your dreams each night and gives you kisses while you sleep".


Monkey: "Love you Bubba".


Me: There is no stopping the tears...


Monkey: "Bubba, Bye, Bye"?


Me: "Noah is bye, bye. He is up in heaven watching over us".


Monkey: "Bye, Bye Bubba".


Me: Sobbing like a baby..


My two year old child gets it. He knows his brother and freely shows his love. I want him to know his dear brother, but to never hurt. I know that I cannot stop the hurt that may one day surface, but I want to always reassure him that it is not his fault and that Noah is always in our hearts. They are kindred spirits whether together or apart. Nothing can break the bond of brothers, especially twin brothers. I am pretty sure my heart was full of pride and broken all at once watching Monkey show his love. It is so unfair that they will never play together and grow up best friends.

The Turtle and The Monkey

Thanksgiving 2006

Okay, we'll have Christmas..

Shopping with Monkey is always an interesting experience. He is far from the typical kid screaming for a toy.

We went to Lowe's and looked at the Christmas stuff. The oohs and aahs were priceless as he saw an inflatable Mickey Mouse. It was almost cute enough to convince me to buy into tacky Christmas crap. I hate that stuff (no offense to those who love their inflatables), it is just not my thing. Monkey is in love with Mickey and has been since he was about 9 months old. I showed him a stuffed Mickey whose ears moved when he sang. Monkey hugged and gave it a kiss. I asked him if he wanted it and he in his usual way said no and pushed it away. He always does that. You show him a toy, he gets excited, you ask if he wants it and he says no.

We kept looking and he was extremely interested in a plastic Mickey snow globe. It is not even a real snow globe with water, but one with the fake stuff that spins around when you push the button. He played with it all through the store so I spent the $10 and bought it for him. My sweet boy looked at me with those huge brown eyes and said "Thank you Mama" over and over again. A two year old who is truly appreciative. He really amazes me. If he keeps that up, I will buy him whatever he wants. He melts me with that sweet, pouty look and the thank yous. In that moment, I decided that I would drag out all of the Christmas decorations for him. I had decided earlier that I wouldn't. I just didn't think I had the energy to face another holiday right now. Christmas is just a time of sorrow and hurt for me, but Monkey reminded me that sometimes the joy of the season is about a cheap, plastic Mickey snow globe and the wonder of a baby discovering this holiday for the very first time.

A new room??

I was rocking Monkey today and found myself looking around his room. When Noah died it took months (about 8) for us to take down his crib. We put up a shelf to hold his favorite stuffed animals and mementos of his life. That shelf is still in Monkey's room. I look at it and wonder if it is fair to keep Noah's belongings in his room. From the outside, they are just stuffed animals, but they were his. I have thought about boxing them up, but I just can't do it. Is it wrong to keep the pictures of my boys together in their (Monkey's) room? I don't want him to grow up in his brother's shadow. It is a part of his life, but should not define him. How do I do this without scarring him in some way? I am thinking of redoing his entire room. Maybe it would be a clean start. A new room for just Monkey. The memories should be kept elsewhere. I just don't want to saddle him with any kind of guilt or sadness. I just can't quite bring myself to put what is left of Noah's life in a box.

Sick again..

Monkey is sick again. Yesterday I felt triumphant when they removed the PICC line and said it looked like the infection was gone. Even though he started running a fever Wednesday. They said it was viral. It would have to be with all the antibiotics running through his little body. Monkey sounds like a little, croaky frog. He has croup.

I knew it last night when I heard that little, raspy voice and hoarse cry. The coughing started this morning so I took him to the doctor we just saw 4 days ago. It is definitely croup. We started him on breathing treatments and steroids. Hopefully, it will not get too bad. This put us in the hospital last year at his time. When does Monkey and myself for that matter get a break?

That's it. I am putting him in a bubble...that should keep him healthy. Right?

Broken

I reached the ped's floor today and she directed me to room 215. I slowly walked towards the door and had to stop. I felt weak and a little sick to my stomach. I started to enter and just couldn't do it. I asked her if we could go to another room. I felt stupid. I told her I know it is silly, I just can't do it today. I know she thinks I am crazy. I just wanted to cry. Today is the 17th. One month from today will be two years. How has two years pasted?

While getting Monkey's meds, my favorite nurse came to visit. She has been by my side through the last two years. She helped get Noah home and has always made sure that my boys are taken care of. She is actually the nurse manager. I told her about the Heparin incident. We talked for awhile and she asked about Noah. She then asked if my husband and I were going to have more kids. I just froze. I told her that things weren't going so well. She has been through a nasty divorce just about a year ago. She is the first person outside of my family and immediate friends that he is gone. She was so kind and supportive. It took all of my strength not to cry. Why can't I just open up and admit that it all sucks. That I can't do this anymore. Holding it together is killing me.

My husband came over tonight to see Monkey. It breaks my heart to see them together. Monkey is so excited to see him and I just want him to leave. I can't stand being near him. It is too painful. It just reminds me that he doesn't want me. He doesn't believe in our marriage. We had a terrible fight. I hate him for this, yet I am still here hanging on. Hoping and praying that what is left of my family will be together once again.

I just want to throw myself on the floor and surrender to this pain. If I do, will I be able to stop it? I just keep shoving it down. I can't take anymore sleepless nights and tears. I am broken and this pain is suffocating me. Do I just walk away? Where do I go from here?

Did I mention that I hate hospitals??

Monkey went for his daily adventure to the hospital for his meds. I didn't know the nurse working and it bothered me. I thought I knew all of the pediatric nurses. I have a tendency to distrust those I don't know and who haven't taken care of my boys previously. She was nice enough so I just let it go.

She flushed his PICC line with saline and hooked up is antibiotics. When they finished, she flushed the PICC again and gives his solumedral (steriod). The last step is to flush with 1ml of Heparin. She had a syringe with 5 mls. Other nurses have done this before, but have always told me he just gets 1 ml. I dislike this practice, but they have been aware and have given the drug correctly. She begins to give it to him and I remind her he only gets 1 ml. She proceeds to give him 4-5 mls before looking at me with that look of knowing you have done something wrong. I was pissed. She told me that she had a boy with a line in his chest and he got 5 ml. She said she was confused. Now I was really pissed. My son is not that boy. It is not okay to screw up with my child. She kept apologizing with a shaky voice, but really I didn't care. It is not acceptable to make a drug mistake, to possibly hurt my child. She kept using this other patient as an excuse. Doesn't work for me. Sorry.

She told me it wouldn't hurt him. Why would I believe someone who just screwed up? I contacted my husband's aunt who is nurse and she reassured me that it wouldn't make him sick. This made me feel better, but it doesn't excuse incompetence. I will be filing a complaint with her boss and she will not take care of my son again. It is the principal of the matter. What if it had been drug that would have hurt him? I don't want someone making that mistake with my child or anyone else's child. How do I know that the boy she took care of previously wasn't 10 and triple Monkey's weight. From now on, I only want to see the amount of Heparin he should be given. No more syringes with more and they just give 1ml. Too much room for error.

Maybe I am overreacting, but I am an overprotective Mama bear. I am his advocate and must speak up when I feel my child is in danger. I am not a doctor and do not know the dosing of drugs for toddlers, but I make mental note every time something is prescribed. I look each time they give him something new. I may make the nurses crazy with my looking over their shoulders, but it is my right and duty to protect my child. It is hard to believe in this day and age such a risky practice is used.

Fear

I live in a world of fear. Fear of losing my only living child. Fear of losing my family. Fear of losing my mind.

I have lived in a world of fear for a long time now. I can imagine all of the terrible things that can happen to me and the ones I love. At no time, did I ever know to fear an unknown, rare disease that would take my child from me.

I was always afraid to die. I was afraid of the pain, the unknown, being alone, and the idea that no one would remember me. I am still afraid to die, but it is different now. Now my fear is for my son having to live without me. This fear is torn though. What about the son who is not with me? Is he okay without me?

I dream he is strong and wise. He looks over me and his brother gently guiding us through life until we meet him again. I tell myself Monkey needs me more. Noah is in a place, whatever and wherever it may be, where is he safe and loved. He is whole and it doesn't matter if he is healthy because it his soul that is there not his earthly body. I dream he can feel my love. I must believe that my love for him can transcend what separates us.

___________________________________________________

I mourn for the life he lived and the life he never knew. I mourn for Monkey losing his twin, never knowing the bond between brothers. I mourn for me. For the son I only held for a short while. This grief is suffocating yet comforting all at once. It is isolating and full all at once. I have found this wonderful community of babylost mamas, who I may never meet in person, who have allowed me into their sisterhood and yet at the same time, am very alone in my everyday life. I have my family and friends, but they do not understand that while they discuss everyday things, my baby's life is running through my mind. They talk about the upcoming holidays and I am swept away to the cold December day saying goodbye to my sweet boy. They expect joy, but I don't believe I have truly felt joy since the day I found out I was expecting. Since then, the joy has been laced with fear and sadness. Grief is confusing and all consuming. I am not sure what drives me. I am not even sure how to reign in its power. It takes over when I am not looking and I become unable to speak or think.

__________________________________________________

Today is day 4 of our daily trips to the hospital for Monkey's meds. We made a late night visit last night because his PICC line was bleeding and the dressing had to be changed. As I carried Monkey through the doors of the ER, I remembered carrying Noah through those doors. Each time I step foot in that building, I must tell myself that I will carry Monkey out with me. Just because we are there does not mean I will leave without him, not like I did without Noah. Each day, I take a deep breath and head for the pediatric floor. I force a smile and say hi to my favorite nurses. Nurses who stood by my side as I fought for Noah's life. Even they have moved on. They have not forgotten, but they, like everyone else, do not see my wounds. They do not feel my grief and fear. As I wait for them to direct me to room, I silently pray it will not be 215. I can't sit in that room with my living child and remember losing his brother. I must be strong and that is more than I can bear.

Letting go

I've been thinking of this often. Letting go. So often, others say you must let go in order to move forward. I am stuck. I don't know how to let go. I am scared to let go. The unknown may be lonely and sad. Funny that I am scared of that. The here and now is lonely and sad.

How do I let go of my son? How do I make peace with his life and destiny? If I let go of this grief, will my love for him be less? I don't want to let go of him. I want to feel his small body curled up against my chest sleeping peacefully. If I let go, will I forget how that felt? This pain is my reminder of his struggle for life. I want to feel this pain so I will never forget him. When he feels far away, am I letting go? When I stood in that hospital room the other day, I didn't feel him. Am I letting go? The room seemed small, empty and very cold. When he left, it was full of family, love, and his spirit. I was hoping to feel his spirit, but instead felt nothing, except maybe disappointment. I think I walked in hoping to inflict a little more of that pain on myself. If I felt the pain, I would feel him. Some days, the pain is all I have of him. I don't know how to move forward on this path of loss. Where do I go from here?

I look at my husband and wonder how we got here. Where is the man who has loved me since I was just a child? I am scared to let go of him. For 12 years he has been my guidepost and strength. He was the one thing I never doubted. With him, I dreamed of my boys and our future. How do I let go? Should I let go? I know that those around me see me as a fool for waiting on him, for fighting for my marriage. Why am I fighting? Is it love or fear or both? I do love him. In a way, I don't think I know how to love him in way that he needs. I don't know how to look forward. My dreams are all tied up in him. He was always a part of those dreams. I don't want to let go. I want my life back. I want my best friend and lover back. How do I let those dreams and wants go? How do I navigate this life without my guideposts? At times, I feel I should just walk away and others the thought is so unbearable, I am not sure I can breath. So I wait, not letting go.

Cruel Reminders

So I called our insurance company yesterday to find out about Monkey's suction machine. Once again, the stupid idiot I was talking to asked for which child. How hard is it to make a note? He is no longer with us. He doesn't need your fucking insurance anymore. Can you get that??



The nurse from above mentioned insurance company calls today to check on us. She asked about Monkey and then asks how our other son is doing. All I said was "He is dead". I let her marinate on that one for awhile. After a minute of awkward silence and sputtering, she said sorry and asked if we needed to see a counselor. Fuck you. What I need is for your large, ass of a company to stop asking me if Noah needs to see a doctor or mailing me Certificates of Coverage so I can get him insurance elsewhere. Make a fucking note and stop asking me.



The delivery man for our medical goods company brought Monkey's suction machine. He looked at me like he knew me and then figured it out. He had delivered oxygen to us once a week for two months while Noah was alive. I miss the gurgle of the humidifier on the oxygen tank. The first night without Noah, I turned it on because I missed the noise.



The new nurse at my pediatrician's office used to work at the local hospital. She was there when the boys were born, when Noah returned from Children's Mercy, and when Noah died. She made the comment that she thought it was neat that she has been there for all of our biggest events. Neat?? I know what she meant, but pick a different word. She means well.



Sometimes, I welcome the reminders. Other times, I hate them. It depends who is the person bringing it up. I miss him. I would give my life so he could have lived his. The reminders just reinforce how unfair and wrong it is to lose a child.

Monkey

Sleeping with my pals...

Ready for dinner...the steroids make me so hungry..


Poor little hand..

The site of the PICC line...

We are home...

We came home last night after the longest day I can remember in a very long time. They placed a PICC line in Monkey's arm yesterday. It took 3 long agonizing hours and it is still not placed exactly where it is supposed to be. They thread the catheter up his arm into the vessels that go to the heart. When they threaded it it went up his neck instead. So after several attempts they left it where the vessels branch to go to the heart and neck. They swear this is ok. I guess I have to believe them.

They gave Monkey Demoral before, but it wore off about an hour before they were done. They numbed his arm, but I could hear his cries as he was papoosed so he would not moved. 3 hours. He is a baby. I can only imagine how scared he was. I am so sorry he had to endure that.

Now that we have the line, we will go the hospital once a day to received antibiotics, steroids, and so the line can be flushed with heparin. This will last for 10 days and then they will decide whether the line will stay until after his surgery.

I am glad to be home and sleeping in my own bed. Monkey is like a wild child from the steroids. Looking at him, you can't tell he is sick. He was so excited to be home he just ran from one toy to another. He finally crawled in my bed and fell asleep watching his new all time favorite, Cinderella. Funny. He loves the mice. It is so good to be home!

He is not so okay...

It has been a roller coaster ride the last few days. Make that five to be exact. Monkey was admitted to the hospital Thursday. I made him a Dr's appointment because after 4 days on an antibiotic for an ear and sinus infection he was not getting better. The doctor listened to the cough and told me to take him to the hospital. I don't know if I mentioned it, but I hate that place. The pediatric floor is where Noah died. Having my living child there makes me sick. I stepped foot for the first time in the room where he died. I felt nothing. What does that mean? I have dreaded for almost two years that we be back in that room and nothing. It is just a room. That makes me sad. I wanted to feel him there, but why would he be there? It is a stupid thought.

Monkey is doing better. Pneumonia was ruled out, but he has a nasty sinus infection that is still present after 5 days of IV antibiotics, oral antibiotics, IV steroids, inhaled steroids, and breathing treatments. I thought we would be coming home today, but the pediatrician thought we would stay. I will do what is best for him, but being in a small room for 5 days with a 2 year old is making me crazy. They are talking about a PIC line and coming back for the antibiotics on an outpatient basis. Hopefully, this is not needed. He also needs his adenoids out and tubes in his ears. They will also culture his sinus when they do that to see why the antibiotics aren't clearing up the infection. I haven't decided when to do this. Putting him under anesthesia really scares me.

We also had the echo done today. It looks OK, but we won't really know until the cardiologist reads it. Cross your fingers. They did say that it looks like some blood back flows from one chamber to another, but they don't really treat it. So I guess that it positive. Nothing major as of yet. Monkey also had a head CT to check his sinuses. I wanted to ask if they would look at his brain. Does he have PMG (polymicrogyria) lurking like Noah? I know another stupid thought...

Send us good thoughts. Just maybe we will come home tomorrow.

He's okay, sort of...

The cardiologist appointment was a nightmare. He cried so hard that he was making himself sick and that was just about getting weighed. I told my husband that I didn't want his help. I may have been a little wrong in that. Monkey was a mess. We waited an hour and a half for the doctor and that is no small feat because our appointment was during lunch and the beginning of his usual nap time. I finally got him busy eating cheese its long enough for the doctor to listen to his heart. The good news is the murmur that our pediatrician heard is innocent. No further action required. The bad news is that she heard a second murmur and is not totally sure it is nothing. She thinks it could be the PDA he had at birth. There is no way to know without doing an echo cardiogram. The catch is that they have to sedate him to do the test and she doesn't want that. She told me that even if it is a PDA, they will not treat it until it causes symptoms. So we wait. In 6 months to a year, they will do the test when he will tolerate it without crying and freaking out. I think I would rather just do it now. I suck at waiting. I am trying not to worry to much. I looked it up on and found that at this age, if it were a large PDA, he would need a heart catheritazion to fix it. That is scary to me.



Monkey is still sick. He didn't fall asleep until 3 a.m. this morning. He could not stop coughing, which would lead to crying, and then the whole process started over again. He screamed for over two hours. I tried putting him in bed with me, the recliner, and his own bed, but nothing made him happy. He finally just cried himself to sleep. I feel like a terrible mother. I know I can't make him feel better, but as his Mom I want to fix it. We go back to the doctor today. I hope they have something else to give him to help so he can sleep (he needs it and I may need it more). Poor kid always has something.



Let's hope for new medicine (and sleep).

I tell myself, he is okay...

Monkey sees the cardiologist tomorrow. I know it is just a check. The tests were all normal and should reassure me that all is fine. I still have this feeling eating at my insides. I have that nervous feeling that makes you sick to your stomach. I hate that feeling.

To top that off, he decided to have what we thought was an asthma attach at daycare today. He started coughing and was struggling to catch his breath. I took him to the doctor and they don't think it is asthma. He instead has an ear infection/sinus infection. Again? Really? Monkey has been sick every three weeks since the spring. Actually since I put him daycare and went back to work. So another antibiotic...oh well, it freaks me out less when he touches the shopping carts at the store this way! It should kill those germs too! I know it is not funny, but it is so predictable.

I also found out today that we were approved for Synagis this year. Monkey hates it so much. We have to go to the hospital once a month to get it. It takes forever and he is now big enough that he gets two shots. He is on the bubble for getting it. Usually, babies only get it the first year. This will be our third RSV season with it. Our pediatrician thinks we should do it since our insurance company will pay. The shots are expensive. That is actually an understatement. They are $6,000 a shot. That is $6,000 x 6 months. You do the math. That is one crazy expensive cold preventative. We have good insurance. It will cost us $0. Monkey will be hysterical every time we go. He cries once we get to the parking garage at the hospital. He will sob all the way up the elevator and scream bloody murder when he sees the nurses. Is it worth the trauma to him? My luck if I don't take him, he will get RSV and I will feel like an ass.

I filled out his medical history forms for the doctor tomorrow and was stuck at how much they leave off. Isn't being a twin important? How about being the survivor? How about his little brother having such a rare, unknown diagnosis (or lack there of)? Doesn't that deserve a line in his medical file? I have a hard time untangling their histories. I do think it is relevant to Monkey. Maybe I think if I always mention it, one of these specialist will have some insight for me? Is that wrong?

I sat last night and read over Noah's medical records from the night he died. I also read the autopsy report for the 100th time. The discharge time is the time he died. "No heroic efforts. They understood and the baby was then taken into the mother's arms. We stopped bagging." It is all so clinical. The baby is Noah. He has a name. I am his mother. He was in my arms and all I wanted was heroic efforts. I did not understand. I was given no real option. I read it and wonder in this day and age, how there wasn't more we could do. How we never even got a real diagnosis. When asked what he died of, I don't know what to say. He died of pneumonia, but if not for his unknown disorder, he would still be here. So he died of polymicrogyria, seizures, hypotonia, an enlarged heart, and the list goes on and on. I read the list and realize how lucky I am to have had him for 90 days. That is amazing.

I watched an Oprah episode I DVR'd that week. It could be Noah. I wish I had known ahead of time. I could have prepared myself (I know you are never prepared). I could have thought out what I wanted to show him. I wasn't expecting him to die so soon. I thought I had time. It was cut short and I have so many regrets. This family is so positive. I wish I had their faith.

I hate doctors. I hate hospitals. I hate them, but I feel most comfortable with them. The hospital feels familiar. The nurses say his name. They don't tilt their heads and stand in uncomfortable silence. They knew him. They loved him too. I am ok while I am there. I am not a leper amongst them. I am not so alone.

Wish us luck tomorrow. I pray that I can keep one boy safe and healthy. I am going to try to have some faith. We will see how it goes...

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.

___________________________________________________

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.

_________________________________________________

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.