Year One Ramblings

I am slowly re-posting, mainly for archival purposes, the nine posts I made in Facebook Notes last year (2010). Below is what I wrote.

MAY 23, 2010
DISCLAIMER: This is very long and incoherent. Good luck making it through.

How do you deal with the loss of a child? Why was there a loss in the first place? I’ve heard it all:
-God has a plan for everything.
-God needed another angel.
-At least you still have Sebastian.
-At least you are young and can have more children.
-At least she wasn’t older.
-Give it a year and you’ll feel better.
-Would you have rather her lived and been very sick?

Can I pause for a minute and say that some (translation: all) of the above statements have not helped at all?? And don’t get me started on people either a) telling me HORRIFIC stories of other babies dying or 2) telling me WONDERFUL stories about how some crack head’s baby, that she threw against the wall, survived and is thriving….yeah, someone went there. Don’t get me wrong, I know people care and don’t know what to say…or may actually believe what they are saying. I wouldn’t know what to say prior to this either. (PS – What does help? Saying, “I’m sorry”, “I’m here if you need me” or just letting me talk about it when I want.) Some people have been great though. Our neighbors and coworkers along with our family and friends have kept us going. And complete strangers have been wonderful to us. A woman on a plane let me tell her my story (why is it easier to talk to a complete stranger?) and just listened, then hugged me. It was so cathartic.

There have also been quite a few disappointments. The obvious is, well, obvious. But there have been others. Facing a tragedy really puts things into perspective and REALLY shows you the true face of your friends/family. There have been people who have known me my entire life tell me I am selfish and want to be the center of attention throughout this (apparently expecting someone-a family member-to attend a memorial service is too much to ask?). They have criticized me for being “too public” about our fight for Ellie (i.e., her blog and posting here asking for prayers and thoughts). Why is sharing and letting people in such a bad thing? Why suffer in silence? Enough of that goes on in my head already. This has been, in certain situations, a venue to bring up everything from years back that is wrong with me or how I handle life; my flaws being thrown in my face just weeks after spreading my daughter’s ashes. People I thought were my friends have fallen off the face of the earth or seem uncomfortable around me now. There are immediate family members who didn’t call, email, or send cards. There are people who have made this situation about them and have dishonored the memory of my daughter. There are people I thought I would grow closer to that have pushed me away or who I find I can't be around. I digress…

As you may tell, I’m having a hard time coming to terms with everything. With ‘dealing’ with what has happened. Will posting to FB solve my answers? No. I doubt many will read this…but it helps to get it out. The support and love we have received has been amazing and comforting. I love my friends and family...I really, really do. Along with all the other guilt I have, I feel guilty for manipulating conversations or not laughing or for just wanting to be left alone. How can I post some silly status update about weekend plans or some crazy driver or a movie we watched or anything when my world is crashing? Someone asked me how I was doing the other day. I’m not sure how I should be doing. The whole 'steps' to grieving thing is BS if you ask me (and I read the damn book!). I go through those emotions hourly!

I am a scientist. Okay. Okay. A SOCIAL scientist. I am also a skeptic. I need facts. I want to know why. In this situation, there is no why. Genetic workups show no chromosomal links. I mean, her heart defect was congenital, therefore genetic, but it wasn’t linked to the tested chromosomes for this particular defect. Many doctor’s have said it just is what it is and sometimes bad things happen. So, who is to blame? Any mothers out there know where I am going. Me. It is my fault. It has to be. I should have done more. Could I have done more? Why didn’t I do more?

The guilt consumes me. I should have enjoyed my pregnancy more. I should have pushed harder when I KNEW something wasn’t right but was assured she was fine. I should have spent more time with Ellie; every second. I should have questioned the doctors even more. I should have fought and screamed when they said she was stable to make it one more day before flying to D.C. I should have touched her more. But I was scared. Scared of hurting her; of making her sicker.

I watched my daughter code. I hear and see and smell everything still. I didn’t want to be one of those hysterical moms, although I was. I stepped back and let the professionals do their jobs. I watched and waited. One male nurse tried to put a screen up so we couldn’t see, but there was too much activity. I will never forget another nurse's face when she looked up at the doctor and he turned toward us. I will never forget falling to the ground in the NICU and crying. I will never forget being taken to a private room and looking at Chris and saying, “Did that just happen. No. That didn’t just happen.” I will never forget holding her as she took her last breath as the machines went silent. I will never forget her and how much she was wanted and loved; how hard she fought and how proud I am to call her my daughter.

When people ask me how many children I have, I will always say two.

Is it sick to say I need the pain? I need to FEEL. I love my family. My husband is, well, amazing. He is my best friend. And my son is my world. But I have a hard time feeling anything but sorrow and regret. Rationality doesn’t live here anymore. I don't know if it will ever come back home.

I know religion has popped into some of your minds. I find no comfort or blame in it, so let’s just skip that, okay? No reason to have theological debates. If you know me, you know where I stand. And hopefully you just accept it.

It’s hard to see pregnant women or little babies. I am so excited for my friends that are expecting or just had a healthy baby. I really am. But it hurts.

When I think about Ellie and start to get upset, I get this pain in my chest and lump in my throat. I wonder why that is? What part of my brain makes that reaction occur?

I have to focus on something. When this online group of amazing women I belong to told me about the March for Babies walk, I was all about it. When the walk was canceled due to weather I was devastated. Yes. The money raised was the goal. But I needed to physically DO that walk. I needed to be with other families that have survived this or who are still experiencing it or who have beaten the odds. I found out there is a walk in my city in June and am all for it. I hope, hope, hope it isn’t canceled. I need it.

Work seems pointless. Does what I do at my job really make a difference or matter in the larger scheme? Doesn't seem like it. I have little motivation and even less ability to concentrate.
I did a little research on women loosing children throughout history. I contacted historians and psychologists. I read accounts from Victorian England. They are a lot more similar than I thought. I always thought we would take it harder now because of medical advancements. Woman just 100 years ago lost multiple children and sometimes their own lives. But it wasn’t “easier” for them. They felt guilt and lost potential too. I don’t know why that comforted me a little.

It is awkward when people say, "You are so strong." And, "I don't know how you do it. I would be a wreck." Just because you didn't see me in bed with a bottle of wine, unshowered, crying, and not eating, doesn't mean I am handling this. I am in survival mode. I am on autopilot. I have a son and husband and it wouldn't be fair to them to just shut off...although it is what I desperately want to do right now. I just keep trying. I just am.

So, why am I posting to Facebook? (Will I post this?) I have no freakin’ idea. It is 10:45pm on a Sunday night and I have to get up early for work. My husband is going out of town for four days and I should be up in bed with him now. But I look up at her poster, book, and urn and just can’t. I don’t sleep well. I tried therapy and medications, but they do little. has been helpful. But there is no magical pill or answer or technique. I cannot stop thinking about her. The what-ifs. The should-haves. The it’s-not-fairs. The I-want-her-backs. I am tormented.

Do I have it worse than others? Of course not. I, unfortunately, know several women who have had miscarriages (some multiple) and a few that have lost children under the age of five for various reasons. I belong to their community of grief now. There is no membership card. But the membership dues are high.

I'lll never be the same.

JULY 1, 2010
Six months ago today, I welcomed the new year. 2010 was going to be a busy and exciting year for us with a newborn and toddler. We were so anxious. We talked about what needed to be finished in the nursery. We talked about how long I would take off for maternity leave. We even started to think about the fall and trips we may take as a family of four; knowing Ellie would be around six months old.

Six months ago today, I was sitting in this very room happily (and somewhat uncomfortably from the pregnancy) watching Sebastian play with his new toys from Christmas while smelling black-eyed peas cooking in the kitchen. I rubbed my belly a lot and talked to Ellie. We all did. Just a few days earlier we had had our first 4D ultrasound. We weren’t able to see Ellie’s face, so the tech asked us to stop by on January 4, after my regular checkup. I couldn’t wait to try again and see her beautiful face. 

Six months ago today, I was content. I was ignorant to what was about to happen. Just fourteen days from then, my daughter would be dead. Now I look back those short six months ago and don’t even recognize myself.

One year ago this weekend, we found out we were pregnant with Ellie.

“Give yourself six months to a year to grieve. It’ll get easier.” Or so I’ve been repeatedly told. But it isn’t easier. Yes, days can go by now were I don’t cry. That dull ache is lessened as I occupy myself, get busy at work, or tend to Sebastian. But when something triggers my grief, it is more intense than it has been in six months. Two steps forward and one crashing-wailing-kicking step back, huh? It feels like it just happened and I am again watching and smelling and hearing those last few hours. I’m holding her and rocking and singing in utter disbelief and at the same time full of pride. My daughter was a fighter. I am not. 

I am able to talk to people about what has happened. I’m proud of what my family has done with the March of Dimes and what we plan to do for the local Ronald McDonald House. I am happy for my friends that are expecting or who have since had children. This experience has allowed me the strength to cut ties with family and friends, something that was a long time coming. I feel I know myself better and know what is truly important to me and I am not embarrassed or ashamed of that. But I am still tormented. I still burst into tears at inopportune moments; making the person I’m with visibly uncomfortable. I know they don’t know what to say…and I know secretly they are thankful they aren’t experiencing this. They are not to fault. I mean, who would want to experience this? I do know they care. But they can go back to their lives and hug their children. Yes, I have Sebastian. But I want Ellie too.

I’ve been thinking a lot about birth defects. There is such a negative stigma associated with that word: DEFECT. Unclean. Unfit. Neglectful. Wrong. Not that I think these things, but I wonder if others do. Do they wonder if I had something to do with her heart defect? Do they think I am being punished in some way? Sometimes I think those things.

I can’t help but research trunkus and try to figure out why and how. My husband says I shouldn’t torture myself. But the only emotions I seem to experience lately are torment, guilt and grief with small, bright moments of happiness. I just don’t understand why. I have always had a deep urge to know why things happen and this is no exception. But there is no why. It just is what it is.

It’s strange, and sweet, how people walked on egg shells around me at first. Not wanting to see the inevitable breakdown and trying to silently stay strong and supportive; letting me know they were there if needed. And I certainly don't expect them to walk on egg shells now. But, if people see me smile or hang around another child (baby girls are still too much for me, but I can handle toddlers because they just remind me of Sebastian at this point), they think I am “doing better.” I’ve actually had several people tell me lately how much “better” I am doing. They don’t see me at home, staring at nothing or crying or snapping indiscriminately at my family. They don’t know I rarely sleep and I have dreams about Sebastian getting hurt or dying or Chris leaving me. I am trying to be strong, whatever that means. I have talked with women who have experienced this and have a wonderful support system in place. But sometimes I think people think I should or even could be “better” by now. Obviously I am not “better”. I do try to lock it down in public as to not upset anyone.

Everyone is starting to disappear. Of course I know they would be there is asked, but I try not to. There were so many faces, and calls, and cards, and emails, and texts in the beginning. It was all a blur then and I was doing everything I could to just wake up every morning. People kept asking how they could help and let me know they were there, but I didn't know what to do or how to be then. It's strange how we grieve and how others comfort us. So much in the beginning and then nothing. They have moved on to the acceptance stage while I am stuck in the pain and depression stage. 

I kiss and hug Sebastian everyday and am so thankful he is healthy. And I miss Ellie every day more than words can express. It is a void that can never be
As with the last note, I don’t know why I am posting this. I have been toying with the idea of starting a blog. I just need an outlet. I need to feel some sort of release. Medicine and therapy and the love of my family and friends aren’t helping like before. It’s like I am a drug addict who needs just a little more to get that good high going. Maybe I am burning my receptors out or becoming immune to life. Six months ago today I was a woman. Maybe all that is left of her is a shell full of torment and grief.


SEPTEMBER 14, 2010

Sometimes it doesn’t feel like eight months. Other times it feels like an eternity. I am starting to forget every detail of this day in January when my Ellie passed. Of course I remember the last few hours, they are burned into my mind and heart forever. But I used to be able to recount every thought, feeling and conversation from that day. Now I just see flashes. That scares me. Am I forgetting her? The guilt never stops.

Time is a funny thing. Eight months ago, I wouldn’t have believed anyone who said, “give it time and you will feel better.” I certainly don’t feel better. The 8th and 14th of every month are always tough. I still cry when I talk about her. My heart still flutters when I see a beautiful pregnant woman (and they all are) or baby girl (I lost it about a month ago at a Toys-R-Us when I saw baby girl Halloween costumes). I am stressing about the holidays and one year anniversary. I am still terribly protective of Sebastian and hover a little too much. What would I do if I lost him too? I know my heart would literally stop. It would just stop and I would cease. But I find I can make it a day or two without crying; it is less painful now. That’s not to say that my thoughts don’t always default back to Ellie and how much I miss her. It’s just to say I am…coping?

I cannot believe some of the hurtful things people have said to me throughout this experience. Forget the stories of other deaths or statements made by people who just don’t know what to say. These come from people I have known FOREVER. Statements such as ‘I thought you were getting over this’ or ‘it’s not always about Ellie’ or “you act as if you are the only one who has been through something tough’ or ‘you are trying to be the center of attention.’ But my favorite is implying that I use my daughter’s memory as an excuse to be mean or hurt people. Implying I would use Ellie as a pawn is sickening. Those that really know me, know how I am every day and that I rarely talk about what has happened. If it comes up, I go out of my way to apologize and make sure that person isn’t uncomfortable. Eight months is all. I didn’t even carry her nine months and you expect me to have thicker skin or not be so sensitive? What part of my dysfunctional past would indicate I could deal with what has happened?? And on what and whos terms?  Is there some magical timeframe I am unaware of?

In a recent response to one of these callous statements, I recounted all the reasons one should be proud of me – I was so hurt I tried to grasp to any reasoning I could think of. I said they should be proud of how I try to do good in Ellie’s honor through charities and by helping other mothers. Proud of how I touch my c-section scar everyday and still get out of bed to hug and kiss my husband and living child. Proud of how I am starting to finally fight. I truly hope another mother who experiences the devastating and life altering event of losing a child, never hears what I have. This is not to say I am perfect. I am acutely aware of my flaws. But this situation is far from perfect…and I guess I didn’t get the memo on how to act accordingly. But the damage has been done…not like there was much to chip away at in the first place.

If you can’t be around people who have known you the longest and be yourself… If you can’t scream and cry and vent and be irrational after putting on a face ALL DAY at work…If you can’t trust these people to be supportive and caring and patient... If you can’t grieve in your own way and expect understanding…then what do you do? 

I talked about this in a previous post, but people have disappeared. Chris is amazing as always. Our relationship is ten times stronger; something I didn’t think was possible. But I feel alone. I am watching people move on, but I am stuck. The time of walking on egg-shells around me is gone. I agree to that, people should move on and hug their children. But we rarely receive the “how are you” messages anymore. Not that I expect people to think about what has happened constantly. I am so thankful few have to go through this. What happened was horrible. It has happened and we cannot do anything about it. But I am still in so much pain. I need to write this out. I need love and support. I need a call or text or hug every once in a while to keep me anchored. I need to not be scared to have a bad day. (And I don't write this to get sympathy or tons of messages or to seem ungrateful. I truly love and am thankful for all the support we have received. I know people are an email, text, or phone call away.)

It’s getting harder to express myself. Maybe it is because I just cannot comprehend what has happened. Maybe I am truly healing. Maybe I am numb.

What do you think happens when you die? I can probably guess what many will say (NOT looking to get into a theological debate here). Would you think I was a bad mother if I didn’t believe in heaven and babies sitting on God’s lap or becoming an angel? I don’t need that. I know my daughter is not physically here anymore. But she lives in my heart and through my actions. I feel her every day. She gives me strength. She makes me want to be a better person; to strive and live and love. But what I wouldn’t give to spend just another hour with her.


OCTOBER 3, 2010

It is 3:30 am and I am sitting alone in the dark in tears. My thoughts always default back to her. Especially at night, right before I finally give in to exhaustion and fall asleep. But tonight I can’t sleep. I just keep running through everything: when we found out we were pregnant on the 4th of July, when we found out the baby was a girl last October, when we listened to the doctors talk about diagnosis and prognosis, when we thought we had a fighting chance and were set to fly to DC for surgery, when I saw her coding and then held her in my arms as she passed, when I spoke at her memorial service, when I spread her ashes, when I watch my son play alone, when I breathe…I cannot stop thinking about her.

I cannot express the grief. The pain is a dull ache that never goes away. Constantly there, reminding me of the horror we have experienced. If I could just find the right words maybe it would hurt less.  

I am supposed to have a six month old baby right now. We would be enjoying the southern fall weather outside as a family. The holidays are approaching and I should be excited to show off my beautiful children to family. I should be happy and fulfilled. But I am neither. Sebastian and Chris fill my soul, but a piece, more than that a chunk, is missing. She is missing. I don’t feel complete.

Trying to be positive or stay focused is a monumental task. Hours go by at work and I realize I have just been staring at my computer screen. It usually takes a phone call or someone coming to my office to bring me back from where ever I have gone. And some days that doesn't work and I just have to go home. Everything about this town, this house, reminds me. Walking alone to my car from work reminds me of January 4th when I frantically called my husband who was in an important meeting and had his cell phone on silent as I hysterically cried. I was heading to the doctor because there was a problem. We didn’t know how serious it was yet. The wind is knocked out of me every time I walk up that hill.

Guilt. I have so much guilt. There is regret and grief and anger and extreme sadness, but I think the guilt is the worst. I didn’t spend every minute with her while she was in the hospital. I wasted time trying to pump milk, getting our affairs in order because we thought we were going to DC for some time, going to Walmart to get a few books and things to decorate her NICU area, cleaning our room at the Ronald McDonald House (it is part of the deal that you clean up and have chores), etc. We even spent four hours with Sebastian the day before Eleanor died, again because we thought we would be gone so long. You may be thinking that we were working with the information we had at the time. You may be thinking that I was recovering from major surgery and should’ve rested. You may even be thinking that I did all I could. But I think you are wrong. Eating, sleeping, emailing, visiting with family…these were a waste. I should’ve been with her more and I need you to tell me that I am a bad mother. Tell me that you would’ve spent every waking moment with your child. Please. I want to hurt. I deserve to. I need to.

I would give anything for her to be here. I wanted it to be me so badly.  I cannot even believe this has happened. I am not strong enough to survive this. Some days I really think I am going to make it through and then others, like today, I can barely breathe. It reallly is a roller coaster and I hate taking people along for the ride. I should be happy that I got to spend time with Ellie. I should be happy that my son is healthy and that I have a loving marriage and supportive friends. I should be happy that some family members have been so amazing and caring. I should be happy I even have a job and house. And I really wish I could and of course I am thankful for it all. But I can’t help but be…words escape me…pissed? Bitter? Pessimistic? Angry? Damaged.

 I don’t understand why. I still torture myself by reading about her heart defect and try to find some cause – something I did to make it happen. I’ve never been one for blind faith. Honestly, I always felt sorry for people that just believed and never questioned or challenged. But I would give anything to believe Ellie wasn’t in pain and that she knew we were there. I would give anything to know she felt our love and is truly at peace. But none of us really knows these things…

Do you think it is wrong to keep posting my thoughts? In this age of social media, is this too personal? What would you do? I go around all day trying not to talk about it; trying to pretend I am ‘better’ (I don’t need to be the center of attention and I don’t try to make people feel awkward). But should I bury it deep inside and just pretend I am okay? Should I write and cry and post as long as it gives me some release? I don’t even know who I am anymore. I don’t know how to act or what to do. My life has been categorized as a pre- and post- now. Is this unstable, angry, sad person who I am to become? Becoming.

I want to be happy again. I don’t want to cry every time Sebastian has a doctor’s appointment—waiting for that inevitable “something is wrong.” I don’t want to hurt when I see a pregnant woman or lose my breath when I hear a newborn cry. I don’t want to throw myself on the floor like a toddler and scream, “This isn’t fair!” I just want to show my husband and son that I love them deeply and am so happy to belong to them. And I want to honor my daughter in every way I can.

I appreciate all the comments to my other posts. I don't write this to make anyone feel bad or guilty or sorry for me. Therapy, medicine, charity work, and online support groups aren't helping like they did before. I am so lost.

I want to hit reset. I want the alternate ending.


OCTOBER 15, 2010

Here comes the sun…slowly.

I honestly think grief is one of the most powerful emotions out there next to love. When you combine the two, it is a miracle one can even function. Although it has been nine months since my daughter passed, I still have bad days (obviously from the previous notes). I spoke Wednesday in front of 300 coworkers in an attempt to get donations for the Ronald McDonald House and made it approximately 1 minute before breaking down. My husband had to save me until I could compose myself enough to finish. But I know it was for a good cause and think we were successful in raising some funds.

I still have really bad days. There is crying and irrationality and guilt that probably won’t go away for a very long time. But here is what gets me through those tough moments: We struggle with WHY. Why are we here? What is our purpose in life? Philosophers and theologians have been debating this FOREVER, but here is what I think in the most basic sense. I honestly think our purpose is to leave this place better than when we arrived; it is all about legacy. My daughter will never have the chance to really leave her legacy, so it is my job to do it for her.

I am trying this new thing. It’s called, “optimism”. op-tuh-miz-uh m. Heard of it? I haven’t in a while. So, this being positive when you have experienced the unimaginable goes like this (and thank you to my wonderful friends for opening my eyes):  

Being in-tuned with my body and emotions, what some perceive as me being too sensitive, helped me know something wasn’t right with my pregnancy. I pushed the doctor and followed through. Ellie would have died in utero, for certain, if we hadn’t had followed up. I would have never had a chance to see how strong she was or to touch her.

Although watching her code was THE most traumatizing experience of my life, I was there with her. She could hear my voice, I know it. I got to hold her and sing to her and tell her, “We are so proud of you. We love you so much. You are so strong. It is okay to go now.” Chris and I were there with her when she took her last breath. How many parents who have lost children get that experience? I will cherish it.

Working with the Ronald McDonald House and March of Dimes will be a lifelong project. I get to try to help other families and children in Ellie’s honor.

There are times I disagree with my parents and question their actions, as I am sure they do mine. But I love them and have always wanted them to be proud of me and happy with their lives. Eleanor would want the same for me. She would not want me to blame myself or shut down. She would want me to continue on my path with her always in my heart.

I have THE most amazing husband (sorry, ladies, but it is true). We have argued more and loved deeper these last nine months than I ever thought possible. But we start and end every day the exact same way; with love. We are both grieving differently, but have remained supportive of one another. This experience has further confirmed that Chris is my soul mate.

Sebastian is my world and it is a good world. Even through the two-year old tantrums, I am thankful for him and love him with all that I am. He doesn’t even know how much he helps me through all of this, but I wouldn’t be as far along without him.

So…this is my attempt at being positive; to try and look back over these last nine months and learn, love, and heal. I know I have so, so much to be thankful for. And I know I will continue to have bad days and will lean on my friends and family to help lift me up. But I will survive this. I am surviving this.

I love you, Ellie.