What are the odds?

I was introduced to a group called SUDC.org. It was founded 10+ years ago by two mothers that their babies passed away the exact same way that my Corby did and now is full of families that have the exact same story all across the world. It is there to help raise awareness for Sudden Unexpected Death in Childhood (SUDC) and right now we are all working very hard to get a bill passed to get some uniformity to how autopsies and investigations happen in SUDC cases to hopefully help research find a cause as to why our babies are gone too soon. We have an email group that we all participate in that we can write to the whole group for courage, uplifting advice, and whatever else we are in need of. It has been a huge comfort to me to know that I am not alone by any means in this awful journey. It also hurts so much to know that I am not alone in this journey. I hate that so many other parents all across the world know my same pain. 

The other night one parent posted an email and this is what some of it says. The topic was about if there has ever been a family that has lost a second child after losing a first. Thankfully out of the 600+ families all across the world not one has had a second child pass on from SUDC. But all of us in this group are still a little weary. This email is a good example of that.

I love the comfort
 of knowing that it has never happened twice to one family,
 however before my healthy daughter passed away I would find
 myself saying 'what are the odds??' A lot. Because I
 was kind of a hypochondriac about everything (if she had a
 runny nose I went to the doc, slept in a bit later I would
 run into her room. My only comfort was 'what are the
 odds of her dying?'.Well needless to say,
 they were sadly pretty good. So now I say to
 myself with my 11 month old 'what are the odds of us
 losing two children?' And I just can't shrug it off
 anymore and take comfort in that statistic anymore. Believe
 me, I want to, but having faith that everything is going to
 be okay keeps getting tougher the closer we get to our son
 being the same age our daughter was when she passed.
 It's like every night when I go to bed I feel like my
 perfectly healthy son is fighting for his life. I get
 horrible anxiety about it, and what used to be a relaxing
 time becomes this nightmare of a night. Anyone else have
 this anxiety leading up to the age of their child's
 death with their other children?

This is my response to what this parent wrote that sums up my feelings.

 I too have lost a lot of my faith. I have lost my trust in my Heavenly Father that he will keep
 my children safe when I can't. I think that it was so easy for him to take my perfectly healthy baby boy why
 couldn't he take another from me. I picture Addy dead all the time when I go in to check on her the several times a night I do and with Ledgyr due to come any day now I am terrified that I'm going to find him dead too and I'm sure I will also picture him dead and my mind will play tricks on me thinking that I will see him with blue
 lips etc when he really doesn't. Lisa (name has been changed), you stated it so well when you feel like your son is fighting for his life and that you aren't going to have much longer with him. That's how I feel too! I write to my babies in an email journal that I will give them when they are older and I haven't been able to write to Addy because I usually would end my email saying that I look forward to watching her grow up or many more birthdays with her etc. I used to write those things in Corby's journal too and I feel like I jinxed him by saying those things, and I feel like if I continue to write those things to Addy that I will jinx her too. Having been part of this group for a few months and I see that our babies have all passed at different ages I know there isn't a magical age to feel like my babies are safe. Before Corby passed I thought that magical age was 12 months because I was safe from SIDS. That obviously became untrue. I don't know if I will feel comfortable at any age. Even when Ledgyr and our future children pass 13.5 months I know that children have passed after that age from being part of this group. So to answer your question about anxiety-Yes, I have it very bad and I fear that I will have it even after they all pass the 13.5 month mark.   One thing I do know that Corby's passing has made me be more grateful for every moment with Addy and every kick and movement from Ledgyr. People keep asking me why I'm so worried and they get uncomfortable when I say that I'm worried because I know my children die. They usually don't know what to say after that. I'm now considered that other person that those things only happen to other people. So no they don't understand when I talk like that to them. I definitely have become more blunt with people since this all happened and so far haven't lost any friends over it. I wish that my anxiety will lessen, but I'm not holding my hopes too high. 

It’s really easy to feel betrayed by the one person you trusted most, your Heavenly Father, I trusted him that he wouldn’t take my babies from me. Yes, I have talked about how he has comforted me through all of this and has carried me on several occasions, but I am mortal. I don’t understand his plan and I do, indeed, have many thoughts creep in dealing with my distrust in Him. Yes, I know that everything happens for a reason and if his plan consisted of him taking another one of my children from me I couldn’t do a single thing to stop it. That doesn’t mean I’m not going to fight my very hardest to try and make that not happen. It doesn’t mean that I’m not going to worry every second of every day about my babies and my husband. I’m a fighter I always have been and I don’t plan on that ever changing.

If we all had an answer as to why our children have left this earth too soon it may help and comfort us to have more trust, but because we don’t know we don’t know what to watch for or look for. We all suffer from PTSD to some extent or another as I’m sure a lot of people that have lost a loved one also do. That is now what our minds, as SUDC parents, have been trained to look for is not a healthy sleeping child, but a lifeless one. It’s a tragic truth that I wish I never knew about. Like I have stated before I wish I had my innocent happiness back. Unfortunately, I realize I will never get that back, but learn to live a new normal- a new kind of happiness. Superficial? At times, yes. I often wonder if the deep down happiness will ever be something that I will have the privilege to enjoy on this earth. For now superficial is going to have to work.   

The reality of life 100 days after

I think that I am at the point in my grieving process that I forget what my life has turned into for brief moments. Those moments are usually where I am too focused on something, or there is nothing to trigger a memory or feelings of loss. The part that I hate about this, though, is that when those feelings come back and I remember what my life is like now it’s like those feelings are a knife stabbed into my heart and twisted. Whereas, if I have some feeling of loss and sadness my entire day when memories or thoughts of that tragic night or painful existence of my life now, creep in they don’t feel as terrible and devastating.  I have this picture up on my desktop at work.

When I look at it I think about that day and how perfect I felt. Corby looooved food. Whenever someone had some kind of food he was right on their lap wanting a taste too. I had just finished making my green smoothie and sat down on the couch to drink it when no sooner did I get a few sips in that this little man was crawling on my lap wanting some too. I called him my little calorie stealer. Not only was he still nursing and stealing calories that way, but he was also eating half of what I ate. I didn’t have a problem with it. I loved to share my food with my baby, and I enjoyed, more than anything, breast feeding him. He was so cute to watch when I would feed him. He melted into me and felt so calm and comfortable there. I knew that my baby felt safe and happy when he was nursing and that made me happy too. Every once in a while he would look up at me and give me this grin that would melt my heart. He started getting to the point that he would blow raspberries and then give the cutest little chuckle after like he knew that he was soooo funny. I, of course, would play right along with him. I remember a recent time when he was wearing new dinosaur jammies and he thought they were so cool. The night before when we put them on him we got all excited and hyped up his new jammies so he got excited too. We tried to teach him what dinosaurs would say, but he didn’t want to have anything to do with that. The next morning when he was nursing I was playing with him and asking him what was on his jammies. He was too busy eating so I started to tickle him and say “dinosaurs! RAAAAR! (in a silly voice)” and tickle his little body all the way up from his little bum to his arm pits. He was laughing so hard and thought that was so funny. So, naturally, I kept doing it because I loved to hear his little giggle. I miss that little giggle more than I can describe. It’s a silence in my soul that will always be there. Sadly, I know that I will never be O.K. with that, but will learn to live with it. I know it’s a slow process. I had one woman describe it to me as a process happening at a dyslexic snail’s pace. Oh how true that is! It’s only been 100 days since I last held my baby in my arms alive, and it feels like it’s been a lifetime. I hope and pray that I will be able to continue to get up each new day. 

Don’t not talk about him

I have run into quite a few people, especially since I work in a hospital, which knows about my situation and can see that I am obviously upset, but will completely avoid the subject. That hurts more than if they were to bring up my baby boy when I was having a “good” day. Let me rephrase that, it never hurts me to bring up my baby boy whether a good day or bad and to ask how I’m doing. No matter the time or the day I still cry. I cry ALL the time. So whether you bring him up and I cry, or smile, it still makes me feel good that he is being remembered. I try and talk about him every day to whoever will listen to me. I probably make a lot of people feel uncomfortable and sad because I bring him up, but I don’t care. It helps me to talk about it. When I do talk to the person I probably cry the whole time because that’s just what I do, but that doesn’t mean that they or I have ruined my day. I, most of the time, feel relief after bawling my eyes out to a complete stranger. Yes, weird, I know, but for me that works. Like I have said before, people all grieve in different ways. Me, I guess I grieve by making other people feel awkward, but that doesn’t make me feel bad about this at all. That person will go on living their lives without carrying around the pain that I have to carry around every single second of my life. So for a second if I can share a molecule of my pain with someone else to help me feel better I’m going to do that. I’m not crazy, though, I don’t walk up to complete strangers in the hall or streets and say “did you know I had a child die?” It’s always because that other person asks about my children, or if I have one or the other gender children. I will NEVER say that I only have one child or that I just have a little girl and one on the way. I DON’T and I never will just talk about my children living on this earth. My baby boy is my pride and joy, and I want everyone to know that.

Here is some advice to people that don’t know the pain, but also some words to those that know exactly what I’m talking about, unfortunately.

1. Please ask the grieving person sincerely how they are doing. Talk with them about memories of their loved one, or ask about some memories that they can tell you about their loved one. I bet you that you will make them cry, but I also bet you that you will make their day by remembering the loved one that has passed on. If they, by chance, say they really don’t want to talk about it then fine you can move on with your day without carrying some of the pain that person is carrying. No harm to you.

We will all have bad days and REALLY bad days, and that will never end whether it’s five months, five years, or 25 years. The pain never goes away. I have heard this so many times from so many people with the pain of death in their hearts. Let me tell you at the five month mark I already hate this constant ache and pain that I have. I am not looking forward to the next 25+ years without my baby boy and all the painful days ahead of me. The grief will always be there so don’t ask if I’m over it yet. I never will be.

2. Don’t ask other people how I’m doing because it seems to you that I should be getting “better” by now. They have no idea how I’m really doing, and how is that going to help me to know that people are thinking about me and my baby if you don’t ask or tell me yourself. Yes, I will most likely cry, but don’t feel bad that you made me cry. I would have probably gone into an empty dark room later that day and cried by myself anyway. So sometimes it helps to cry with someone rather than alone.

3. Grieving people aren’t some disease. They are regular human beings too. They may be slightly more fragile than the next person, but that’s ok. This does not mean avoid the disease so you don’t catch it too. Just talk with them. Don’t give them advice- that usually doesn’t help. Let them do the talking. Even if the only thing that comes out of your mouth is “I’ve been thinking a lot about you and your angel how are you doing?” That’s ok. Let them tell you about it. Ask them questions. Even if they are questions like “what are some things you are doing to remember your angel?” One thing you don’t ask them is “What happened?” Yes, I know you are dying to know, but try and find out from someone else. Going straight to the source on this one is NOT the best. They already live the tragedy over and over in their head. They don’t need to keep telling it out loud over and over again.

4. Don’t keep things from them that you think will hurt them. If you would have told them before any of this happened then you should find the right time to tell them even after their tragedy. If I am not ready for something then I will tell the person that I am happy for them and when the time is right I will excuse myself from the room. You can never know what triggers a grieving person so just treat them normal and let them process it how they want. They have all their energy being used up on their grieving they are not going to be mad at you for some good news you tell them about you. Jealousy? Yes they may be jealous, but that comes with normal grieving and you can’t help that. You can help hurting their feelings by keeping something from them or keeping them from something or somebody. If you’re honest with them they will be honest with you. One thing that a grieving person is, is honest. Something my grief counselor told me is that I don’t have enough energy to grieve as well as make sure that I’m not hurting other people’s feelings. No, I am not going around calling people names, or being rude to them. I will tell someone that I really don’t have the energy to talk about that right now, or that I can’t handle that right now. She said that if that offends someone then that is their problem that they are offended by something as little as that, and you probably wouldn’t have the energy to deal with someone like that anyway. I completely agree with her. I know that doesn’t mean that grieving people have a free ticket to be major jerks. Every grieving person knows that already. They don’t have the energy to be a jerk. Their hearts are so tender and torn up anyway, they won’t have much to be rude or mean about.    

So pretty much know that we are fragile and very tender, and you can proceed with caution, but please, please don’t avoid us or our angels.  You never know, you might find out some interesting stuff about this grief club that we have all been signed up for against our will. 

Today last year

This time right now last year we were headed to a wedding for one of Brock’s cousins. I remember it so vividly. I had both children in tow and my mother in law was in the car with us so I had the blessing to sit in the back of the car with my two babies. I will never forget that car ride. I remember looking at Corbyn since he was still backwards facing due to his age and feeling so much happiness and joy to be a mother and to be a mother to my two beautiful babies as I was also listening to Addy jabber on the other side of me. I felt complete. I had just got done running earlier that day over 10 miles as we were training for our first half marathon and I was on such a high. I specifically remember staring into Corby’s eyes and amazed by the light and sparkle he had. I could see that my baby was so happy. I could see the love in his eyes. I touched his face and told him how beautiful he was and that I loved him so very much. That is one thing that I learned early on was to never miss a chance to tell my children that I love them. Even if they didn’t realize how much I loved them I still wanted them to hear that their mother loves them. Now more than ever have I realized how important that is. I, even, tell my unborn child that I love him on a daily basis, and I mean it. I don’t say it like a chore. I feel it deep down inside of me. I don’t know how other people love, but my love is not by any means on the surface. I love deeply and passionately. I feel that is why I feel so completely broken and shattered from the inside. I wasn’t someone that felt they physically couldn’t get out of bed or that I couldn’t walk another step after Corbyn passed. Physically on the outside I have felt like I always have. The inside of me is what is broken to the core and I am terrified because I don’t know how to fix me on the inside. People will look at me and think that I am fine. Think that I am strong. Again that is the outside that they see. They can’t look at the inner me and see the pain and sadness that I carry with me every second of every day longing to feel complete again. Longing to feel that innocent happiness that I once felt. I smile hoping that some of that will seep in to my core. It never does, but I still do it anyway because people now think that I should be over this and moving on. I should be happy that I am pregnant with another little boy that will comfort me and make me happy. I am very happy that I have the blessing to have another boy, but in no way will he ever take away the pain that I feel for Corbyn. It’s the same as if Corbyn were still here. Would I be replacing some of my love and worry that I have for Corbyn to give it to Ledgyr? Nope. I just gain more love and more worry for another baby. That love and worry for my other children still stays. It still stays after one of my children has passed as well. Will he make is so that my arms won’t feel as empty? Yes he will. Completely full? Not even close. I still have that empty hole that will never be filled no matter how many children that I have. 

I can’t believe that he has only been gone a year. It doesn’t feel like last year at this time that he was here in my arms. It feels like an entire lifetime. His memories seem so distant, and I fear that I am starting to forget them. I think about this time last year and wish so much that I could go back and live up to that point with my babies over and over again. I hate what is coming in 6 days. I feel like it is a blessing that Ledgyr could come any day, but I feel like I am so focused on my pain and sadness. I’m quite certain that Corby sent us his little brother during this time so that we would feel of the gift and miracle of life and not focus on how our lives were turned completely upside down last year with him leaving us. I am having a hard time focusing on that part though. The trees changing and the weather getting cooler don’t bring calmness and comfort to my soul like they used to. It now brings a lot of anxiety and emptiness to my soul. I used to absolutely love fall. I loved the smells the colors and even the change in wardrobe. It was my favorite time of year. It was the time of year that my eternal companion proposed and asked me to spend eternity with him. It was the time of year that Corby came into our lives. It was also the time of year that he left our lives. That, so far, has trumped everything else, and I don’t know if it will ever change. I hope that Ledgyr’s calm spiritual birth can help with making this time of year be better for me. I’m hoping my next entry will be a happy one. One of birth and life and excitement. 

Monster

Corby has been known as my little monster even when he was in my belly. He was the wiggliest thing and would constantly be moving so my belly looked like I had a monster in it. That quickly became is nickname and stuck. 

 This picture summed up his ‘monster-ness’ perfectly.  He had so much hair that every time I would get him out of the tub and get him greased up like a plump little piggy with lotion I would always put it in his hair and do it spiky-crazy because Addy always thought it was soooo funny. Even the other day when we were hanging out at our friend’s house and the mother had just gotten the baby out of the tub and after she got him all lotioned up she made his hair crazy. Addy immediately pointed out that it was like Corby’s hair and went over to play with the baby and his hair. I love seeing that she remembers things like that about her brother. Anyway, as I spiked his hair this particular time after I did it he was putting his hands up making the “Eh” sound for me to pick him up. I of course had to snap a picture before I did pick him up and he gave me the perfect ‘cheeser’ smile as I snapped the picture. I was the best! This picture quickly became his monster picture and we even used it on his monster birthday invitations.  Oh my little man had the cutest personality and definitely loved to show it off to everyone that would pay attention. I miss him more than words will ever describe, and still wonder how I will be able to get through each day. 

On another note- I have been able to give another Corby Basket out, and it has had the same effect on me as the last one did. I know that this is something that not only our Savior would want, but that Corby would want as well. I still haven’t figured out how to give them out to places in mass to give out grieving parents, but hopefully that will come along shortly so that I can share my baby’s love and compassion with more people. I’m so glad that I can have this opportunity to bring some comfort to other people, and hope that I will be able to spread my boy to many many more people.