Tuesday, December 30, 2014
2015
We had plans to be more aggressive in starting HeavenSentPenny but the realities of the grieving process delayed things a bit. We decided to just hold off until our hearts were stronger for the task. Our goal for 2015 is to continue the creation of HSP so that we can be there for those who have experienced infant loss. Now at least in a better emotional position than 2014. We are planning a fundraising event in March to memorialize Penny & to launch the org. More info to come.
Friday, November 28, 2014
Thanksgiving
Yesterday was tough. A lot tougher than we thought it was going to be. Maybe we thought because we were healing and were feeling stronger recently that we could breeze through... But no dice.
I think it crept up on me in the morning. As my other two were playing in the living room. The gravity of the holiday sunk in my heart. Don't get me wrong. We have so much to be thankful for. Through our family tragedy we received so much love and support. It has carried us for the last 9 months. But as I observed them in play I could only imagine her. Her crawling and playing and screaming along with the others. I could imagine the "First Thanksgiving" onesie we've bought our other kids. I could imagine loading up the car full of kids and heading to have Thanksgiving dinner at our families house.
The day went from acknowledging thanks to sadness. The sadness led to anxiety. Anxiety of having to smile and pretend that we were okay when during this holiday we were not. We thought we would be...
Generally, we are okay. And when we say we are it is the truth. God has provided us with healing. Just this holiday, as much as it helped recognize the good that has happened this year, it ultimately also served as a reminder of what we no longer have...
So we decided to stay home. We ran to the market and purchased some Thanksgiving fixings. We whipped up a quick meal. And we prayed and ate as a nuclear. On a makeshift table we laughed and healed and talked about what we are thankful for. The day ended a little better than it started.
Hopefully our family forgives us for not attending or at least understands.
Hope everyone had a great Holiday. We thank you for thinking and praying for us during the day. We did feel them.
Erik
I think it crept up on me in the morning. As my other two were playing in the living room. The gravity of the holiday sunk in my heart. Don't get me wrong. We have so much to be thankful for. Through our family tragedy we received so much love and support. It has carried us for the last 9 months. But as I observed them in play I could only imagine her. Her crawling and playing and screaming along with the others. I could imagine the "First Thanksgiving" onesie we've bought our other kids. I could imagine loading up the car full of kids and heading to have Thanksgiving dinner at our families house.
The day went from acknowledging thanks to sadness. The sadness led to anxiety. Anxiety of having to smile and pretend that we were okay when during this holiday we were not. We thought we would be...
Generally, we are okay. And when we say we are it is the truth. God has provided us with healing. Just this holiday, as much as it helped recognize the good that has happened this year, it ultimately also served as a reminder of what we no longer have...
So we decided to stay home. We ran to the market and purchased some Thanksgiving fixings. We whipped up a quick meal. And we prayed and ate as a nuclear. On a makeshift table we laughed and healed and talked about what we are thankful for. The day ended a little better than it started.
Hopefully our family forgives us for not attending or at least understands.
Hope everyone had a great Holiday. We thank you for thinking and praying for us during the day. We did feel them.
Erik
Friday, November 14, 2014
Organ donation update.
In the last couple of days we received news that the letters we wrote to the families of the organ recipients were never delivered. Because the donations went to different states the chain of communication is long. There are privacy rules in place.
Long story short there was a breakdown in the chain and because of a language barrier between us and the recipient families. The letters were never received.
What we know so far is that the children who received Penny's liver and heart are doing well. Both parents were excited to hear that we had written to them. They should be getting our messages to them in the next day or so.
I got the full update yesterday at work. After a few minutes it sunk in. And I broke down. I was excited to know that the children are well but it was a reminder that Penny is not with us. Bittersweet doesn't begin to explain. Hope to one day meet the families. But realize it will be more difficult that I thought.
We are so grateful for our representative at the NJ Sharing Network. She has been tireless in tracking down the right contacts at the recipient angencies. And following up with us.
This Monday she would have be 10 months old...
Erik
Long story short there was a breakdown in the chain and because of a language barrier between us and the recipient families. The letters were never received.
What we know so far is that the children who received Penny's liver and heart are doing well. Both parents were excited to hear that we had written to them. They should be getting our messages to them in the next day or so.
I got the full update yesterday at work. After a few minutes it sunk in. And I broke down. I was excited to know that the children are well but it was a reminder that Penny is not with us. Bittersweet doesn't begin to explain. Hope to one day meet the families. But realize it will be more difficult that I thought.
We are so grateful for our representative at the NJ Sharing Network. She has been tireless in tracking down the right contacts at the recipient angencies. And following up with us.
This Monday she would have be 10 months old...
Erik
Sunday, October 5, 2014
Therapy
Recently I went to see a therapist.
What prompted my visit was a few bouts of panic attacks that I've dealt with recently. I've had anxiety and panic in the past and have usually been able to deal with it through meditation and breathing techniques. But recently the strength and the frequency have just been too much and have been coming out of nowhere. So I decided to make sure I wasn't developing PTSD or something. Which I've read can happen after experiencing a child death. Especially since I am the one that found her.
A few observations the therapist helped me make.
I have been very strong and courageous throughout this whole process. Which is great. But I am allowed to not be brave. I don't have to be strong for everyone else. I may have built up my wall too strong. Have to let my guard down.
I am a good father. And that hasn't changed because this happened. I did everything I could to give her a chance to survive once I found her. I have to stop blaming myself. As a father it is hard to separate myself from the blame when something happens to my family. But I have to try.
I have to let the grieving process happen. I've pushed myself a little too much to "feel better". I need to hurt, I need to cry, and I need to feel all of the emotions as they come, good or bad. My healing isn't going to be a light switch that goes on. It will take time. I do not know how much time.
I plan on going back soon. I think she helped me frame some of what I was already feeling/thinking. -
Erik
What prompted my visit was a few bouts of panic attacks that I've dealt with recently. I've had anxiety and panic in the past and have usually been able to deal with it through meditation and breathing techniques. But recently the strength and the frequency have just been too much and have been coming out of nowhere. So I decided to make sure I wasn't developing PTSD or something. Which I've read can happen after experiencing a child death. Especially since I am the one that found her.
A few observations the therapist helped me make.
I have been very strong and courageous throughout this whole process. Which is great. But I am allowed to not be brave. I don't have to be strong for everyone else. I may have built up my wall too strong. Have to let my guard down.
I am a good father. And that hasn't changed because this happened. I did everything I could to give her a chance to survive once I found her. I have to stop blaming myself. As a father it is hard to separate myself from the blame when something happens to my family. But I have to try.
I have to let the grieving process happen. I've pushed myself a little too much to "feel better". I need to hurt, I need to cry, and I need to feel all of the emotions as they come, good or bad. My healing isn't going to be a light switch that goes on. It will take time. I do not know how much time.
I plan on going back soon. I think she helped me frame some of what I was already feeling/thinking. -
Erik
Thursday, October 2, 2014
Grief
Erik sent me a really interesting post yesterday. It was written by a woman who lost her son at 32 weeks pregnant. His heart simply stopped beating. She wrote the article because she realized that she had been struggling with the "right way" to grieve. Ultimately, she came to the realization that there is no right way or wrong way to grieve.
That is still something that I am struggling with.
Monday was the 29th, 6 months since Penny died. The night before I woke up around midnight, in the midst of what I think was a panic attack. I felt like I couldn't breathe, and I was very nervous that I might actually pass out. I didn't want to wake Erik, but he woke up anyway and rubbed my back until I calmed down. Since reading the article he sent me, I have come to realize that my grief is centered around struggling with the belief that I don't have a right to grieve. See, I was the one that put Penny on the bed to nap. Something I had done with Sofia and Sebastian, on more than one occasion. If we took them to a family gathering, or to a friends house, and they fell asleep, we would smooth the sheets, put up a pillow fort around them, and lay them down, occasionally popping in "just in case".
So, naturally, I feel as if Penelope's death is my fault. If I had put her in her bassinet, like a good mom, she would still be here. I know that blaming myself won't bring her back. But that doesn't stop the guilt. That doesn't stop the inner thoughts that scream at me, "Why didn't you put her in the bassinet?!?!".
I think my grieving process is being stifled by this guilt. I am so very very lucky that never once has Erik said anything along the lines of feeling as if this is my fault. And every single one of my close friends have told me the same thing: "We've all done it Les, we've all put the kids to nap on the bed. It was just an accident". And I know they are right, that is was just a horrible accident.
So for now, I am working on my guilt. I think this process will take a while, as I find it creeping in to my everyday. If dinner isn't perfect, I feel guilty. If all the laundry isn't done, folded, and put away, I feel guilty. If I don't feel up to taking Sofia and Sebastian to the park, I feel guilty. I have to allow myself the right to grieve, and feel what I feel, without the guilt overwhelming me and shaming me into blaming myself for my daughter's death. I can't say that I know right now exactly how to do that. I do know, that for the sake of my children, I won't stop until I figure it out.
ilu Princess P
LS
Erik sent me a really interesting post yesterday. It was written by a woman who lost her son at 32 weeks pregnant. His heart simply stopped beating. She wrote the article because she realized that she had been struggling with the "right way" to grieve. Ultimately, she came to the realization that there is no right way or wrong way to grieve.
That is still something that I am struggling with.
Monday was the 29th, 6 months since Penny died. The night before I woke up around midnight, in the midst of what I think was a panic attack. I felt like I couldn't breathe, and I was very nervous that I might actually pass out. I didn't want to wake Erik, but he woke up anyway and rubbed my back until I calmed down. Since reading the article he sent me, I have come to realize that my grief is centered around struggling with the belief that I don't have a right to grieve. See, I was the one that put Penny on the bed to nap. Something I had done with Sofia and Sebastian, on more than one occasion. If we took them to a family gathering, or to a friends house, and they fell asleep, we would smooth the sheets, put up a pillow fort around them, and lay them down, occasionally popping in "just in case".
So, naturally, I feel as if Penelope's death is my fault. If I had put her in her bassinet, like a good mom, she would still be here. I know that blaming myself won't bring her back. But that doesn't stop the guilt. That doesn't stop the inner thoughts that scream at me, "Why didn't you put her in the bassinet?!?!".
I think my grieving process is being stifled by this guilt. I am so very very lucky that never once has Erik said anything along the lines of feeling as if this is my fault. And every single one of my close friends have told me the same thing: "We've all done it Les, we've all put the kids to nap on the bed. It was just an accident". And I know they are right, that is was just a horrible accident.
So for now, I am working on my guilt. I think this process will take a while, as I find it creeping in to my everyday. If dinner isn't perfect, I feel guilty. If all the laundry isn't done, folded, and put away, I feel guilty. If I don't feel up to taking Sofia and Sebastian to the park, I feel guilty. I have to allow myself the right to grieve, and feel what I feel, without the guilt overwhelming me and shaming me into blaming myself for my daughter's death. I can't say that I know right now exactly how to do that. I do know, that for the sake of my children, I won't stop until I figure it out.
ilu Princess P
LS
Friday, August 22, 2014
HeavenSentPenny
On March 23, 2014 3:38pm our lives changed forever. It is the minute I found our daughter not breathing on our bed. She was 9 weeks old.
When you have 3 kids you kind of feel like you are a veteran of the parenting thing. Up until that point we felt we had been through everything possible. So you take for granted all the "what if's" when you are 3 children deep.
We placed her on our bed not knowing she was stronger than we had expected a 9 week old to be. We had 2 kids worth of experience. She moved herself into a position that prevented her from breathing. It was 15 minutes between the time we left her and the time I found her.
I found her. 14 minutes too late. At 3:40pm I was screaming into the phone at the 911 dispatcher. 5 minutes later we were headed to the hospital. 6 days later she was removed from life support.
We never thought we'd be here. Neither do the parents of the nearly 2,300 infants who lose their life annually.
We lost our daughter Penelope to an accidental suffocation. What used to be classified as a SIDS death is now SUID - Sudden Unexpected Infant Death.
SIDS/SUID is something that impacts so many families. But it's not a reality most people think about. We never really did. Until we lost our daughter.
We had a support system. A group of family and friends that helped us emotionally and financially after we lost Penny. Not everyone has that support. So in the days following her passing and her funeral services we decided we did not want this tragedy to define her life. We wanted to create a legacy beyond March 23, 2014. And that is when we decided to create HeavenSentPenny.
HeavenSentPenny is an organization with the mission to support families who have recently lost an infant.
We want to provide support in several ways. First, in the short term, we want to send care packages to families after they've experienced the loss. Second, we would like to send grieving families on healing trips.
In the aftermath of our loss we were sent many gifts that were very therapeutic to our healing. We were also fortunate enough to be able to take a trip as a family to heal away from home. The time spent as a unit helped us immeasurably. We want to be able to offer the same gifts to other families who cannot do the same.
Our hope is that HeavenSentPenny will be that support for those families.
In the coming months we will be incorporating and filing for 501c3 status. We will be starting some fundraising activities to help with the initial cost of starting HSP. I will also be participating in the NYCTri in 2015 to raise funds to sponsor our first family trip later next year. We have many ideas and plans but we will be starting small.
We hope you follow us through this new journey in our lives. Stay tuned for updates...
- Erik & Leslie Santos
When you have 3 kids you kind of feel like you are a veteran of the parenting thing. Up until that point we felt we had been through everything possible. So you take for granted all the "what if's" when you are 3 children deep.
We placed her on our bed not knowing she was stronger than we had expected a 9 week old to be. We had 2 kids worth of experience. She moved herself into a position that prevented her from breathing. It was 15 minutes between the time we left her and the time I found her.
I found her. 14 minutes too late. At 3:40pm I was screaming into the phone at the 911 dispatcher. 5 minutes later we were headed to the hospital. 6 days later she was removed from life support.
We never thought we'd be here. Neither do the parents of the nearly 2,300 infants who lose their life annually.
We lost our daughter Penelope to an accidental suffocation. What used to be classified as a SIDS death is now SUID - Sudden Unexpected Infant Death.
SIDS/SUID is something that impacts so many families. But it's not a reality most people think about. We never really did. Until we lost our daughter.
We had a support system. A group of family and friends that helped us emotionally and financially after we lost Penny. Not everyone has that support. So in the days following her passing and her funeral services we decided we did not want this tragedy to define her life. We wanted to create a legacy beyond March 23, 2014. And that is when we decided to create HeavenSentPenny.
HeavenSentPenny is an organization with the mission to support families who have recently lost an infant.
We want to provide support in several ways. First, in the short term, we want to send care packages to families after they've experienced the loss. Second, we would like to send grieving families on healing trips.
In the aftermath of our loss we were sent many gifts that were very therapeutic to our healing. We were also fortunate enough to be able to take a trip as a family to heal away from home. The time spent as a unit helped us immeasurably. We want to be able to offer the same gifts to other families who cannot do the same.
Our hope is that HeavenSentPenny will be that support for those families.
In the coming months we will be incorporating and filing for 501c3 status. We will be starting some fundraising activities to help with the initial cost of starting HSP. I will also be participating in the NYCTri in 2015 to raise funds to sponsor our first family trip later next year. We have many ideas and plans but we will be starting small.
We hope you follow us through this new journey in our lives. Stay tuned for updates...
- Erik & Leslie Santos
Subscribe to:
Comments (Atom)