Day-12 Normalizing Grief

Day 12 – NORMALIZING GRIEF Often while grieving we have feelings of isolation because we fear judgement that what we are feeling isn’t normal. But it is amazing to see just how many people feel the same way. When others stand up and express how they feel through sharing their experiences, it allows us to say “Hey, I feel that way too!”. Connecting with and communicating our experiences we are able to normalize our grief for ourselves and others. So share something about your grief journey that you might feel is strange or not common. It might be something you do to remember your children or maybe it is something you fear. By sharing these parts of our stories we can educate others on the grief experience. 

I have always been told to raise my children to not be spoiled, but to love them unconditionally and let them know that they are loved.  I was never very good at listening to their advice about not spoiling, but definitely did the later very well. I have regrets, now, that I didn't spoil Corby enough. I wish that I would have never let him cry himself to sleep the one night that he wouldn't go to sleep and I was so exhausted. I'm thankful that I didn't listen to his pediatrician when she said that I needed to lay him in his bed so that he didn't get in the habit of needing to be rocked or nursed to sleep. Now, there are some nights that I will pull Ledgyr out of his bed just so that I can rock him and listen to him breath. I will put him to sleep most nights by nursing him and I don't care if that is something that he gets used to. When I go to bed at night I have to check on both him and Addy. I will put my hand on their chests to make sure that they are still breathing, and I have to make sure that I give them a kiss on their cheek. Nowhere else but their cheeks. That was the one thing that I hated I couldn't kiss on Corby when I said goodbye to him that night in the ER. His cheeks were all taped up and covered because they intubated him. I don't remember what his cheek felt like the last time that I kissed it and it kills me. The last thing that I remember feeling on my lips was me putting my mouth over his to give him CPR. 
The days after, I racked my brain wondering what I did wrong. Before we got the autopsy report back I blamed everyone. I blamed the pediatrician I took Corbyn into the week prior because I feared that there was a crackle in his chest that was going to turn into pneumonia and he didn't catch that there was something wrong with Corby. I blamed myself (and still do) that I killed my son because I took him that morning and gave him the flu shot. That was the only thing that was different that day and I can't get over that it didn't have something to do with it. Even though I have had countless physicians tell me that it probably was a coincidence. I thought along the lines that he must have gotten into something under the sink and I blamed myself that I didn't keep those cupboards locked better. After I found out that he had gliosis and an abnormal hippocampus I now blame myself that I did something wrong when I was pregnant with him that made his gliosis form. I blame myself that possibly his gliosis was from me not nourishing him better. From all check ups and growth it showed that he was happy and healthy, but what if? I blame myself for things that weren't even the case   
When I go into check on my kids most nights I will look at both Addy and Ledgyr and they will look like they aren't breathing and are grey. There has only been a couple of times that I have panicked and woke them up. Usually when I go in and my heart is pounding I try to make a noise loud enough to make them move, but not enough to wake them. Ledgyr had to sleep right next to me for the first 6 months of his life and I would wake up all the time just to make sure that he was still breathing. I am so terrified that I am going to find one of my other children dead that I have been prescribed Ambien so that I can get a couple of hours of sleep a night. As soon as it wears off around 2-3 am I am right back up checking on them. My anxiety it higher right now due to Ledgyr reaching the same age as Corbyn was when he passed as well as Corby's angel day too. I used to not be able to pinpoint the issues of my anxiety at first. Now I can, for the most part, recognize what is causing my anxiety and either know I can ride the wave out or find the help that I need. The grief counselor that I was going to for a while was the help that I would turn to a lot during my early days. She would help me realize that the things I was thinking or doing weren't crazy and that I was simply grieving. She talked to me about healthy grieving and not healthy grieving. There was a longer list of things under the healthy grieving than not. 

For instance-

I obsess over everything. I take video and pictures of my living children constantly. I don't want to miss anything, and every time I do all I think about is I'm taking this so that I will have it later for when they are gone too. I think about everything as being sentimental now, from the corn dog stick Ledgyr chewed on at lunch to the smudges on the window he made as being precious because that could be the last thing from him. I made Brock pull off Corby's handprints that were on the TV screen just so that I could have them.

 I have saved a spoon with peanut butter on it that had Corby's two bottom teeth marks in it. I have kept an empty bottle of hair gel and a prescription bottle because Corby chewed on them and left little teeth marks everywhere. Someone thought that it was weird that I kept an expired bottle of baby acid reflux medicine in the cupboard and the only reason I do is because it was Corby's prescription. The last meal that he ever ate is in the bottom of my freezer in a tupperware and zip lock bag. I still have his toothbrush in the cup with the other kid's tooth brushes. His towel is hanging next to Ledgyr's in his closet. His crib is still set up with some of his blankets still in it. I have a plant that someone gave me after Corbyn passed that I try desperately to keep alive because I feel that it is somehow keeping part of my son alive.

I haven't been able to use any of Corby's clothes on Ledgyr. I tried the other day with a shirt that Corby never wore that he got for his birthday and lost it. I wish more than anything I saw Corby in all those clothes. 
These are all things that grieving parents do. I felt so crazy with some of the things that I have done, but have been reassured on multiple visits to my grief counselor that I am just grieving. I am trying to keep the memory of my son alive the best I can. I'm not going to get over this and move on. That will NEVER happen.

Day 11-Glow In The Woods

Day 11 – GLOW IN THE WOODS Today I want to honour the beautiful writers at Glow In The Woods, past and present. This was the first place I found on the internet where I could read about other parents experiences with grief. They were literally my light in the darkness. When we become bereaved, in the beginning, many of us look outwards for help. We set out in the darkness of night with a blanket and a lantern in search of others like us. Along the road we usually find someone or something and it is with that discovery that we can walk this road with understanding company and with that, we watch the sun begin to rise over our worlds again. Who was your glow in the woods? Share some resources that have aided you in your healing journey. It may be a website, charity, organization, a person/teacher/therapist/new friend etc. Whatever it is, share what is so wonderful about that resource and how it has helped you. Please feel welcome to share links so that others can benefit.


I have had many people that have been a glow in my life. One was a dear friend in my old neighborhood. She was one of the first people that I called after everyone in my family had been reached. I woke her up from a complete sleep and turned her whole world upside down. She started right then gathering people to come to my aide. After everything settled and people went back to living their lives she came around just when I needed it to let me talk. She even got a gym membership with me when I'm sure she would have rather done something better with her money. She would go to the gym with me and listen. We would talk and she was open enough to ask questions. It was good for me because she made me feel like she wasn't uncomfortable around me and my grief. She made me feel like I was heard and important when I felt so little and alone. She let me talk about my fears, pain, anger, and everything in between without judging me. She made me feel like my baby mattered to more than just me and my little family. I understand how hard grief can be around and for people to be uncomfortable with what to say. She never let me think that she was uncomfortable. I will forever be grateful to Heavenly Father for putting her into my life. She is my friend that was the glow I needed to guide me. 
My husband, although traveling the same journey as me has been a glow to my faith. He has been the one to help me have the faith to stop asking "why" and is helping me to just know that Corby needed to return to our Heaven Father. He is my comfort when I get so angry that I can barely contain myself. He has given me countless priesthood blessings to help calm and protect me. He is the father of my children and his love for them is a bright glow to my dim lantern. 
My father was also a glow in the darkness. He took Brock and me to different funeral homes and guided us as we were both staring blindly into the distance not really comprehending what was happening to us. He protected us from funeral homes trying to take advantage of us in our time of grief-which I am so thankful for. He was the humble guidance and love that we both needed. He was the level head that helped us plan the beautiful funeral that we had for Corby. He was the one that held me tight on his lap as I would sob the days after Corby passed. He was the one that caught me seconds after I was told that there was nothing else they could do and Corby was gone- immediately engulfing me in his arms. 

I had, during my early days of grief, and continue to have now  many other people  who are a glow in the darkness. I would spend days talking about how each of them help(ed), but I know they know who they are. Many friends from work, complete strangers, new friends, and many family members to name a few. 

One friend reached out to me who also lost a daughter on the same day as Corby- just a few years earlier. Her baby had a genetic abnormality, and didn't make it for very long after birth. She talked to me about her grief and how she made it through those first days of grief. I asked her how she dealt with the fear that her other children would have the same abnormality, and she told me about how her and her husband were contacted to be in a research study. She told me to see if there was a study out there for Brock and me to join. I called the only place that I knew that did extensive research in Utah, and that was the University of Utah. I was put into contact with their research coordinator who was compassionate and very willing to help. She didn't know of any research in Utah that related to us, but while doing some searching she found SUDC.org. I can't remember if she contacted Laura (the founder of SUDC) at first or if I did. If it weren't for her and my friend, though, I would have never found SUDC. I was so lost and felt so alone that I didn't even know where to begin to look for the right support that knew my grief and pain. I had no idea that I wasn't alone for several months. SUDC has helped me so much and has been my biggest "glow in the woods". SUDC  has research through Boston Children's Hospital and Harvard. Through that research I have been able to learn a little more about what could have happened to Corby. You can read about it here. Most of all, though, it has been the other parents that have helped me the most. I am so grateful for finding them. I would be in a different place right now if I didn't have parents on the same road as me to talk to about my grief. Some of the parents are several years a head of me on their journey and to hear their perspective on things has helped tremendously. 
I know that every one of my "glow in the woods" aren't by accident. I am grateful for each and every one of you. Thank you for always remembering my baby and letting me talk when I have needed it the most. I love you all!

Day 10-Words

Day 10 – WORDS Writing is a wonderful tool for healing. When you put your pen to paper you may have no idea where you are going or where you will end up and that is the beauty of it. It is your own adventure. Find some time today to write by hand. You can write about whatever is on your heart right now. It gives you the chance to write down anything that you need to release. Do you have a poem inside you or a short story that is waiting to come out? Maybe it is just one word, that needs to be written over and over and over. Whatever it is, write as little or as much as you need to. If you cannot find the words today, you can always share something from someone else, like a quote or poem, just be sure to credit the author.

I have found writing as a way to help me release my grief. I have always written my children to tell them about their little lives. I started an email for each of them when I was pregnant with them and would write to them. After Corby passed I didn't want to stop writing to him. Now I will write to him to just talk to him. To tell him my deepest frustrations, fears, and sadness. I am really not in the mood to write something tonight so I decided I would see if going back and reading some emails that I wrote to him would help me to want to write him. It didn't. Instead I think I will share what I wrote him on one of the days. It was the first day that Brock and I visited his grave since his funeral. It's a bit of a run on of words, but when I write him I focus on what needs to be written and not proper english- so bear with me on this one. 

11/11/2013

Today was a day I never thought I would be doing at such a young age. I'm sure that I'm going to have a lot more of those firsts though. Daddy and I went and visited you at your grave today. Your flowers were still on your grave, and a lot of them were still alive. You were feeding the bees with your flowers. Which is just like you to be doing something for someone or something else. I think about what you are doing in Heaven, and I know that you are one of the strongest and best missionaries up there because of how you were here on earth. 

Last night I finally broke down and got angry and cried more than I even cried the night you left us. I got angry with how Heavenly father took you the day he did. I got angry because I still don't understand how you truly died. I wish that I knew if you had a seizure and suffocated because you were face down or if it is how the thoughts in my head have happened. I'm terrified of the fact if it was from a seizure due to the flu shot if I could handle that. I don't know if I still with your future siblings will get them vaccinated. I hate the fact that you had to go. I'm not mad a Heavenly father because I know that it was meant to be, but I'm mad at the timing of when you went. I was enjoying this stage of you so much. I feel so close to you. More that I feel with your sissy for some reason. I feel like I have always felt closer with you since the day that you were born. I fear that I won't feel that with any of your other siblings either. I fear that Heavenly father isn't done taking my babies from me. Along with many other angers a fears. I finally verbalized all of this with your dad, Bishop Perry, and brother Waterfall and it felt good to talk about it. They gave me a blessing and I have felt a lot better since then. I can't imagine how I'm going to be able to live my whole life with out you. I miss you beyond comprehension. I ache all the time. I'm sad all the time, and feel so empty inside. I'm so thankful that I have your sister to keep me from being completely depressed and hopeless. 

I look at all the most recent pictures that I or dadda took of you and I ache all over because I remember being there and taking the picture of you. I remember the feeling I felt when I took the pictures or while I was watching dadda take the pictures of you. I remember feeling so beyond happy, blessed and in love with you I am. I don't know how to express how much I miss you. I remember when I would write to you before I would try to refrain from saying "I can't wait". Like I can't wait to see you walking, or all grown up etc because I could wait for all of that I wanted to enjoy every stage of you and not wish any of it away. Now, though, I can't wait 'til I see you again. I can't wait to finish raising you in the millennium. I can't wait 'til you and your sister can be together again. She misses you so much. I ache for her aching. I can't wait for your daddy to teach you baseball. I'm so excited to be able to raise you and be able to do it with only pure happiness and no worry. I hate how slow the days go by because I know that when another day goes by that I am that much closer to seeing you again. I keep wishing that I can at least dream about you, but all I dream about is grieving about you, and all of my fears. I want to for a little bit get rid this nightmare that I am living, but I don't seem to be able to. I hate it. I can officially say that because it is beyond true. I hate that I have to go through this. I hate that I am not the one providing the comfort to someone else, but the one that everyone else is providing the comfort to. I hate fearing that I will forget about you and how you laugh, or say mama, or your little grunts. I wish that I would have been able to get you saying mama on video so that I could always have that. That is a huge regret I have. I wish I would have gotten more recent professional family pictures. There are so many things that I wish that I would have done and when I think about them my aching hurts a little more. I want this aching to stop. I want it to all go away and for me to be holding you in my arms. I love you so much my guy. You are my everything. Please pleas come visit me in my dream and say mamma to me frequently so that I don't forget. 

Love, 

Your only Mama   

I have never gone back and read what I wrote him those first days after his passing. Today, as I have been doing that it's amazing to me how much of a blur I was in. I don't remember 90% of what I wrote  in these emails. Brock and I talk about how we can't even recall certain big events ever happening during those first months. 

I also ache remembering the rawness of my soul. I still feel raw, and sometimes I feel worse because I am raw and not in my cloudy state of shock still. I wish some days I can go back because I wasn't so far away from seeing him alive back then. Now I'm beginning to forget memories and how he felt physically in my arms. However, I am now closer to seeing him again in the after life than I was back then. 

Day 9 -Family

Day 9 – FAMILY – What does your family look like today? Who is your family to you? What do they mean to you? 

What does my family look like today? Incomplete. It will forever and always look incomplete because we will always be missing a child. I hate taking pictures of all of us together because it is one more silent reminder that my son is not here with me. When we know that there is a family picture we will prepare and bring our Corby bear with us, but if one is sprung on us then I try to avoid it being taken. 

I'm ok with having pictures taken of us individually but not all of us together. We had the bear made out of one of Corby's blankets, but not everyone knows that is what the bear represents so we also choose to have pictures taken with his actual picture. When people see that family picture they aren't sure what to say.

 

The family picture that represents us the best now is this one.

​It shows that Corby is still in our family, but not fully with us. 

Who is my family to me? They are my everything. They are the air that I need to survive. They are each their unique selves that make me whole as a wife and mother. Each member of my family in their own way makes us a complete family. They are the beauty in my life. Without them I am not me. I no longer am a mother to three children or a wife to a wonderful man.

What do they mean to me? More than I can ever express in words. I live because of them. I wake up each day because of them. I miss my son so much because of how much I loved and adored him. I feel like I'm not completely living because he's not here. I need my family. I need my son. My family will forever feel empty. I will forever have the feeling that I am missing a child. I am grateful for my faith and knowing that I will be with my son again. 

This picture depicts that very well.

I am grateful for eternal families and I can hold onto that piece to help me make it through this journey until I am with my son again.

Day 8 Wish List

Day 8 – WISH LIST What are your wishes for this grief journey? What do you need from others? It might be that you want your child to always be remembered. You may wish to educate others on grief and healing. Maybe your wish is to turn this tragedy into something beautiful. Spend some time thinking about what it is that you hope to be able to do, learn or gain from this experience.

I have such a long wish list as I'm sure every grieving mother does. The list probably only minutely changes because we all want our children and what is best for them.  Of course, just like every mother out there that has lost a child my biggest wish is for it to all be different. I wish that I could cuddle and give my baby kisses. I wish that it wasn't His plan to take Corby back so soon. I wish that I would have never gotten him his flu shot. Then I would know for sure it had nothing to do with his passing. I wish that Addy still had her playmate. I wish I could feel him giving me his kisses again. I wish he would come visit me. I wish that I was able to watch my baby grow up, get married and have children of his own.  I wish I were on a different path. I wish I put three kids to bed tonight. Those are all wishes that, because of reality, I know aren't feasible. 

So, now, the things I wish for are things that can really happen. I wish that my baby is NEVER forgotten. That people will always remember there is one more body to our family than what is seen. I wish that people will learn of Corby and his story and want to be better because of him. I wish that he will change the love of a father or mother towards their children so that they will love them more and not take them for granted. I wish that Corby's story will be heard all over the world to bring awareness to SUDC as well as to just get to know my perfect baby boy. I wish I knew why my son had to leave. I wish that I knew how he ultimately died. I wish that people would realize that I'm NEVER going to get over the death of my son. I will always want to think about him, and say his name, but most of all talk about him like he still matters. I wish that people would bring him up like he matters too.  I wish that people would be ok with me talking about him and not get uncomfortable. I wish that grief wasn't something to hide from and that everyone would be open and ok with it. I wish that when I talk about triggers that still make me anxious or sad that people would respond with more than just an "oh", or worse, not say anything at all. I wish that he wasn't forgotten during the holidays and that he was treated just like the rest of the children that are still here. I wish that people would just talk with me instead of feeling like they need to give me some kind of advice about my situation by what I could look at differently or be doing better. I wish that I could honor Corby in the perfect way to reflect how perfect and amazing he was. 

I will continue living each day to fulfill my feasible wishes because I still will live every day of my life for my children. Including the ones not seen or heard.