Organ Donation

NEW UPDATE: 3/31/2015
UPDATED: 3/30/2015



When a little bit of reality set in that night in the ER and my baby wasn't coming back there wasn't even a question whether or not to donate his organs. I wasn't sure if anything could be donated because he had been gone for so long without oxygen and his heart not pumping. I was told that there are still things that can be donated. I can't remember if they had me sign papers there, but I do remember getting a call later that morning from Intermountain Donor Services (IDS). It was such a hard conversation to have because I was talking with someone and giving them permission to harvest my son. To cut into him and take perfect little things out of him. I knew that it was still the best option because if I couldn't have him alive with me then the best thing is to make it so that his organs could save a mother from going through what I am going though. I never thought that I would have to make this decision for one of my children, but yet I never thought I would be planning a funeral or picking out such a tiny casket for one of my children either. I knew that he would have wanted me to make that decision to share his life. Just like I have talked about before, he was the most loving and service oriented little boy I had ever met and he was only 13.5 months old! IDS told me that his heart valves were still good and could be used. It was a good feeling knowing that my boy would live on in another child. I didn't want to think about how that harvesting took place even though I had watched autopsies before. I still don't like to think about how he was cut open. How every little last part of him was examined with his little body cut open on a cold hard metal table. His perfect body was no longer perfect. His perfect little head that I used to kiss, and comb his hair was now cut into. In the back of my mind I know that this happened, but if I start thinking about every last detail and how everything was performed I lose my mind.
So after knowing that he would be able to give life to another little body I figured that I would hear from either IDS or maybe directly from the family or families that benefited from my loss. Over a year passed and I still hadn't heard anything. I finally received a survey in the mail from IDS wanting to know how they did with the whole process. I felt it was a perfect time to let them know that I had never heard about what happened to Corby's valves. A few weeks ago I finally received a call from IDS. I asked if I could know if Corby's valves were used. She told me yes and told me that his pulmonary valve went to a 10 month old baby boy in Nevada and his aortic valve went to a newborn baby boy here in Utah. I asked if she knew how they were doing, and she told me that she doesn't receive even the information of who the recipients are let alone how they were doing. I wish more than anything that I could talk with the parents. To tell them who my baby was that saved their baby's life.
I saw a few stories on the news about children that received hearts and the parents of the deceased child met the recipient child and listened to their heart with a stethoscope. I thought that was tender, but I didn't quite get it. I truly wish I never had to get it. I didn't get the longing to hear something from your child again. That deep pain that, at most times, is so uncontrollable you want to scream in agony. I get it now. I get all of it. I want so bad to be able to meet those little boys and listen to their heart that is working properly because of my son's valves. Those valves that I carefully grew in my body with such love and care. Those valves that were once keeping my son's heart beating and his body alive. I want to watch them play. I want to hug them. I want to tell those parents how much my baby was and is still loved. How much he is missed every second of every day. That part of me will forever live with them.
This is where I need help from the online community. I have contacted a separate part of IDS that I was told could "possibly" help me. I have heard nothing from them. I would like to hope that the mother or father or someone that knows these little boys to come across this post. So please pass this along to help get it to where it needs to go.
As a refresher you can go here or see relevant information below:
Corby passed the night of October 18, 2013. He was not taken to the ER until after midnight so his death certificate says October 19, 2013. His valves were harvested that same morning of October 19, 2013 around 9 or 10 A.M.

UPDATE 3/30/15: UPDATE 3/31/15: I just received a call from someone at IDS. She was kind enough to fill me in on a little more information about how tissue donation works. Corbyn's heart valves weren't transplanted right away. Sometimes tissue doesn't get transplanted until sometimes 2 years later. Corby's valves did get transplanted within that year before I inquired about his valves, but that just means that my search just became much bigger. His valves were not transplanted around the time of his death so these two boys could have gotten them any time in 2014. My biggest problem is that if the recipient or recipient's family doesn't register with the tissue donation place I could write letters until I'm blue in the face and they wouldn't go anywhere, or I have to find them on my own. They have to be registered if I go the traditional route. Tissue donation places aren't on the same track as organ donation places in that there isn't a case worker involved at the hospital to help the recipient in writing a letter if the choose to the donor family. The majority of the tissue donation places do send a packet with the tissue for the surgeon to give to the recipient. Unfortunately the tissue place that Corby's tissues went through does not provide that service at this time. So Corby's recipient's may or may not know to register.  Hopefully that will change in the near future. I hope that Corby made an impact on helping them change. So I am asking two things. One, any family that has been a recipient of tissue donation to please find out which transplant processor your donated tissue went through and register through them. The place that people register for the tissue processor, Cryolife, that handled Corbyn's valves is called Caring to Share. So I beg of you to please register.  Like I stated above usually with organ donation there is a case worker with the recipient that encourages them to write a letter to the donor family. With tissue donation there isn't. I for one don't see why it's not as important since it's a tissue from a deceased person. That tissue is still coming from someone that is no longer living. Why not a case worker? It is still coming from a family that is still aching in so many ways.  Second, please everyone and anyone share this blog. Keep it going until I find my baby's valves. Share it in every avenue you have available to you. I would like to hope that the parent's that have my baby's valves are forever grateful and would like to hear about where those valves came from.
Great news!!! While working with IDS they were able to get in contact with Cryolife and the recipient's family from Nevada have registered. 
I never thought what I would say once I found the recipients. I am overcome with so many emotions. What do I say? How do I tell them how precious my son is to me? How he is and always will be part of me? How their son will forever be blessed and have part of Jesus' right hand man with him? How do I tell them how perfect he was? I feel like there aren't enough words to describe my son to them fully. I want to so bad send them the thousands of pictures and videos I have of Corby to help them get a glimpse of what I am missing out on. I'm not jealous that they get to keep their son. I'm happy that my son was able to give the ultimate gift--life. At time's I'm angry that he isn't here. I'm angry that such a perfect body had to so abruptly leave this earth. I'm angry that I didn't get to fight for him as his mother. I'm angry that I have to live this emotion-filled and raw life now. BUT I am grateful for the technology we have to save lives through tissue and organ donation. If the shoes were reversed I would be forever grateful and indebted to the mother that lost her son and ultimately saved mine. I guess that's what I'm scared of. I'm scared of their emotions towards their donor and family members (us). Are they grateful, or are they just curious and want to just find out about where their son's valve came from? There are "lookie loues" everywhere that are curious more than emotionally attached. I'm scared that is what I am going to get. How will my emotions handle that? How will I handle knowing that my baby was given to someone that doesn't really want to know about him? I'm sure that it will all be fine, but I still worry. Remember how I talked about thinking worst case scenario and then when it turns out better I am pleasantly surprised? I'm believe this is what I'm doing here. Hopefully I'm pleasantly surprise. 
So now that ONE of the TWO recipients have registered I still need to find the other recipient from Utah. So please continue to share this to help families register so that IDS can match them with us and other donors or for the family to find me through here. Thank you!
  

The ER

This week started out as one of the hardest weeks in a long time. Brock woke me up Sunday night with extreme abdominal pain. It didn't go away and when I palpated his stomach it was hard and tender up by his gallbladder so we headed to the hospital. The same hospital that our baby was taken to. The same place I was told that I now was a mother to an angel. Where I was told that my life will forever be changed. I had anxiety just driving there knowing where we were going. When we finally got back into a room they put us into the room directly across from the room that my entire life changed. I was able to stare directly into that room. All those emotions and feelings came flooding back as I stared at that room. I'm grateful that it was empty because I'm sure it would have been a lot worse if there would have been bustling around in the room. I never wanted to set foot back into that hospital again. The one time I had to for 5 minutes to drop off a Corby shirt to a friend I had a mental breakdown and lost it, and that wasn't even going into the ER. I never wanted to go there ever again. So being there for several hours having to look at that room and see the same tech that did compressions on Corby that night really killed me. It added to the stress of me already being worried about my husband writhing in pain on the bed. It was really nice to be able to talk with a fellow member of the "angel club" that happened to be there as one of Corby's nurses the night that we brought him in. He was kind enough to stay awake to chat with me when he was home. He was able to calm me down and reassure me that the anxiety and feelings I was having were all normal and he too still has those kind of feelings about certain things that remind him about his baby girl. I'm very thankful to have people like that in my life to help me with what I need.
He told me that Corby's night has haunted a lot of people that were in the ER that night and that nobody has forgotten him nor that night. Later the ER tech told me that she recognized me right away, but didn't know what to say to me in case I didn't remember her. There are some people that I remember from that night and others that I don't. I remember her specifically because I watched her do compressions on my son's tiny little body. That night is still so vivid and clear to me. I can close my eyes and it feels like I am standing in that room looking at the monitor willing as hard as I could to see his heart start back up and be able to watch it beat on the monitor. I remember everyone telling me to sit down. I didn't want to sit down I wanted to make sure my baby was ok. I remember someone standing next to me explaining to me everything they were doing to try and get his heart started again. I don't know if I will ever forget about that night. I don't know if it will ever not feel like I'm still standing there in this stagnant reality that I don't want to believe.
It's not just me that had anxiety. Brock's sister was an angel and was willing to bring us some necessities that we needed and drop some milk of to my parent's for Ledgyr and as she got to the room after we were admitted she had a lot of anxiety. I could see it all over her face. It made my heart ache because I knew why she looked that way.  She told me that it's because the last time she came to that hospital was in the middle of the night to say goodbye to her little nephew, and she too never wanted to go back to that hospital again. My parents also had a lot of anxiety, as well, because the last time they were called in the middle of the night it was the worst news of their lives. I forget how many lives this has affected. I hate that this has hurt so many people. So many people have so much pain in their hearts too, and that hurts me to know that I am not the only one in pain over the death of my son. I think about little things all the time that would be different if he were here. He would be playing with Brock's sister's son all the time. He would be another chatterbox in the back of my car. He would be that third little bum in the bathtub at night. He would have been the third child that my parents would have picked up that night in the ER. I think about how it would have been harder for them to take three children in their car. I wonder if we would have given them our car to take the kids in and used their car. I wonder how all sorts of situations would be different. I feel guilty sometimes because it is easier to take two kids around rather than three and sometimes I feel a relief that there is two. I wish there were three and I would deal with the struggle that more kids sometimes cause. I would gladly handle that any day of the week, but I still feel guilty. I guess that is part of the grieving process to feel guilty. Even if the death you had no control over. Your mind will still find something to feel guilty about. My counselor warned me about that. She told me to not feel guilty when I get a relieved feeling for certain things. Her example she gave was to not feel guilty when you feel relieved that you have one less child to buy school clothes for. She is right though. At the weirdest times I have moments of relief like that. Then comes the guilt after. Always guilt.
To report on Brock. He is fine. He had to have his gallbladder removed. He had several gallstones that could be seen on the ultrasound as well as a very elevated white count. The physician was worried that it was infected so they wanted to have it taken out right away. After it was out the surgeon came out to talk to me about how the surgery went and told me that it was severely diseased and it was one of the most diseased ones he has seen in a while. Before the surgery I was upset that they were insisting he get it taken out, but now having that knowledge I'm glad that he had the surgery. I'm so thankful that it was only his gallbladder and not something else. With my broken heart and mind my initial thoughts where he had something serious like cancer and  he would be dead in a few weeks or there was a problem with an organ that couldn't just be removed. So not only would I lose my son I was going to lose my husband as well and I was going to be a widow before I am even 30. I used to try to think glass half full type thoughts until I lost a baby suddenly and for no reason. Now my mind jumps to the worst case scenario first. I am starting to see that if I think that way then when something bad happens I'm not devastated or surprised, but if it turns out better then I am pleasantly surprised. That's good right? ;) I'm glad that everything turned out fine, but I still don't think I was ready to be back in that ER. I still don't plan on going back there any time soon if ever again. I'm glad we are moving so far away so our hospital that will be close to us now won't be that hospital.

A picture says a thousand words

There is a special thing that Corby used to do with us right before he passed. Brock talked about it at the funeral, but if you can't remember I'll fill you in. Addy's favorite movie around that time was E.T. she would walk around saying "E.T. phone home" and touching her finger to either mine or Brock's finger. Corby caught on quickly and he started doing it too. He would walk up to us making his "eh eh eh" sound holding his chubby little finger out for us to touch his. We tried several times to reciprocate it for other people to see because it was so cute, and he never would. I believe that it was him telling just his family that it was time for him to go home. After he passed I wanted to have a drawing of his little hand but twist it a little and instead of having him touch is finger to E.T. he would touch it to Christ's finger. I had an amazing friend offer to draw it for me. She spent countless hours and several months drawing it so that it was perfect for me. The detail that she put into it was unbelievable. I want to eventually put it on his head stone once we get plots for Brock, me, and him. The place we have him right now is my grandmother's plot and we knew from the very beginning that it would only be temporary. We needed somewhere to put him until we could get enough money to buy our own plots. It was also a comfort to me to have him not be buried alone and be next to my grandfather. It's such a terrifying feeling to not be able to have your baby with you or someone you know at all times. Even if it is only the shell of their body. That is still the body you know. I remember the night that they made us leave the ER and we had to leave him there the feeling I had was so terrifying and empty. The detective that drove him down to Salt Lake told me that he was so gentle with him and so careful the whole way because of the fact that he knew that was my baby he was transporting. That was a comfort, but just knowing he was there with strangers still makes my heart hurt.
Anyway, back to the original reason for this post. Here is a picture of the drawing.

I am so grateful for her and her amazing talents. I am grateful for her service to draw something so amazing for us.
Now for the second part of this. This last weekend was FanX. I was having a particularly hard time for some reason. I have talked about before about how I want to wear a sign around my neck telling people that I have another child.  I wanted a sign so bad that whole weekend. We took our nephew on the Friday for his birthday and there was a guy on Frontrunner that started talking to me about the kids I had with me. I so bad wanted to tell him that the boy playing with Addy wasn't my son and was my nephew, but at the same time it felt nice for someone to acknowledge that I had three children even if it was my nephew that I was using as my "sign". When it was Saturday I really wasn't wanting to go. I was tired and emotionally exhausted. I walked around the two days prior watching little boys running around in super hero costumes and wishing my little boy was running around too. I wondered what costume he would have chose to wear. I wondered if he would have stayed right by me or if he would have stayed right by me or if I would have been chasing after him the whole time. Chasing that I wish I had the chance to do.  Brock was there already on Saturday so I was meeting him and I kept having the feeling that I needed to go. I kept thinking along the lines that it was good quality time to spend with my husband. The last hour that we were there we were walking around the art section. I really was ready to go and we had already walked around the art section a few times the other two days, but I'm so glad that I didn't tell Brock that. because we came across this...

This is SO perfect because Corby's nickname was spidey. It's also a twist on his E.T. phone home thing. It felt like Corby was telling me that everything is fine and he's ok. For me to know that he is with me. I got chills when I saw this picture and I could feel him so strong. We asked the artist why he drew pictures of children with super heros. He told us that his first one was this one because that is him as a little boy and he always wanted to meet spiderman when he was little. I then told him why that picture was so perfect for us. After we spoke for a minute and went to get our money to pay for the picture he handed it to us and told us that he wanted us to have it to honor our Corby and his memory and it was the least he could do. I was blown away of the empathy he had for a complete stranger. There are some really great people in this world. You can check out his other art here. I am so thankful that I went that day. I can't stop staring at this picture. As we were walking to get out of the convention there were a few people that saw the print and told me how great it was. I was then able to tell a few more people about my baby. That felt really good even if I did cry when I told them. It always feels really good to talk about my perfect baby boy and I'm quite certain that won't change. No matter how many years pass. 

"Get over it"

I had heard from other people who have previously lost a loved one that other people have said that to them. After Corby passed people told me that I would be hearing that from people that didn't get it. People that had no idea what it was like to lose a child. They told me that it would come as a complete blow and hurt so much. I hadn't thought much about it past that, though. I thought I surrounded myself around people that were compassionate enough to understand there was no way to ever get over losing my child. My beautiful, healthy, amazing little boy.
I just started back to work last week so once again I'm getting people asking me about my children since they knew I was out on maternity leave after having a child. Corby always comes up because I will never not talk about him and exclude him as one of my children. I was talking with a laboratory instrument rep and all those questions came up. Corby came up and how he died was asked, obviously, but what came next utterly shocked me and rattled me to the core. Then my core lit on fire and it took everything in me to not explode. This rep talked about how he had a sister that lost her 27 year old son the same way. His wife went to wake him up for work to find him dead. The autopsy report came back as unexplained and unexpected death. He talked about how his sister decorates his grave and does so many things to remember him and posts them on Facebook. He then said that he loves his sister so much but he wishes she would just get over it already. "It was three years ago and she's still doing all this stuff." Yup you thought exactly right on what I did next. I lost it. Thankfully I had another coworker in there with me that had lost her husband years ago very tragically. I knew she knew what he was saying was wrong. So she helped me feel more confident to kindly tell this stupid, stupid man that what he was saying was very hurtful and so very wrong. I asked him questions that he most likely hadn't thought of. I asked him if he thinks of his children on a daily basis. He answered yes. I asked him if he enjoyed taking care of his children an he said yes. I then asked him why then would it be any different for his sister. Why does she, now that her son is dead, have to stop thinking about him and doing things for him the only way she knows she can? Just because now when she thinks about her son feelings of sadness and grief come along with her thoughts doesn't mean that she can't have those thoughts. Grief is a never ending journey. If she wants to decorate his grave and post pictures of it on Facebook then she can. That may be her way of working through her grief. Why does someone else that hasn't gone through the pain get to decided how long a griever can grieve? To judge them for grieving the way they grieve? If you were in that person's shoes would you still think about your child every single day? Wonder what they would be doing? Wonder what they would look like now? Wonder what they would grow up to become? How about all those generations that could have been but aren't and won't ever will be? These are all thoughts mothers and fathers that have lost a child think about daily. What is wrong with that? I look at my two nephews that are 6 months younger than Corby. They are now past the stage that I last knew Corby at. They are saying new words every day and doing all sorts of new things. EVERY time I look at them I wonder what Corby would be like now, and it makes me sad every time. My heart feels like it gets stabbed every time. What is wrong with that? NOTHING! I will probably always look at them and think that. I see them play together and wish more than anything that Corby was there playing right alongside them. What is so wrong with me thinking those thoughts? What is so wrong with me going and decorating his grave?

It made me feel so good to do something for Corby. That day it was my grief work. It's what got me through that day. I loved that the kids wanted to help too. You can tell that they did the majority of putting the decorations in the ground. It shows their love, and I love that. That's what Corby would have liked the best too. That is what helps MY grief. I hope more than anything that people understand that for me as well as for the other bereaved parents out there. We do what keeps us going each day. Sometimes the day is too much for us. Don't judge us. Love us. We need it. 

Remembering him

Now that the holidays are over I wanted to touch on the subject of remembering someone's child that has passed or any loved one for that matter. It hurts the bereaved beyond comprehension that they have to go through the holidays without their loved one. For me it's my child. I don't get to see him stuff his face with candy on Halloween. Run around with cousins and eat Thanksgiving dinner. Write letters to and visit Santa. Open present after present on Christmas morning. All of these things I will never get to see him do. His first holidays he was just months old so there wasn't much interaction with him enjoying the holidays. I was looking forward to them so much the next year because I knew he would be a such a great age to enjoy it. It hurts so very much that he's not here every other day, but even more so during the holidays when family is such a focus. As the death of my son gets further and further people are now forgetting that he existed. As his mother I still think about it every day. Just as any mother would think about her living children. I'm sure my thought process is different from the usual thoughts that run through a mother's head about her living child, but it still doesn't stop me from thinking about him. This doesn't change around the holidays either. I walk past toys and wonder if he would like that, or clothes and wonder if he would fit into that now. Wishing that I was buying those things for him for Christmas.
It hurts us in the bereaved parent club when people don't remember their child any time, but even worse around the holidays. They don't need to go out and buy extravagant gifts for the child as if they were here, but just remembering them in some way is all that the parent needs. I experienced this on both sides this year and I can attest to you how much it hurts to not have my son remembered. To help with people remembering him and doing something simple I set up his grave with a tree and two wreaths for people to put an ornament for him.

I don't bring this up to make people feel bad, but I want to make other people aware of ways to help and comfort a bereaved parent. Some simple, yet very effective ways of remembering a lost loved one that I have thought of are:

-Send them a card acknowledging that you are thinking of them and their loved one

-Buy an ornament that reminded you of their loved one and either give it to them or hang it on your own tree letting them know you did that.

-Make a donation in their name to a charity you feel best

-One that I love is very simple. Write the loved one's name down somewhere that you are vacationing or in another country, state, city etc. Even if you are just at work. It can be on a simple piece of paper or in the sand, snow, dirt etc. Send it to the parent letting them know you are thinking of them this holiday season or any time for that matter. 

- Plant a tree in honor of their loved one and decorate it the way the loved one would have liked. 

-Do something for the loved one that has passed (very simple) if you are planning on getting something for the rest of the family. (It's very easy for the family to think you forgot about the loved one that has passed when you don't acknowledge them in some way) Even if it's writing them a letter or buying something for them, but can be used by someone else in the family. 

I'm sure there are plenty more ideas and I would love to hear about them from everyone. So please share, but make sure to remember their loved ones. It will mean the world to them when you do.