I started writing this post last Tuesday (20th) and have never posted it but after reading through it and realizing that many of my "feelings" have similiarities today, I will leave them and adjust accordingly. Last Tuesday proved to be ranked in the top 5 (maybe top 3) of worst days so far with a complete meltdown and hours of tears.
My confusion continues, the emotional hurt and pain is still there, the next course to take remains unknown and the world continues to move. I have wished so many times that the world would just stop for me, that everything would just stop until I was ready for it to start again.
They have the handbooks for dummies on every subject in the world accept for this process of grieving and wish I hadn't been naive enough to think it was going to simply ease after only a month. So many people have said to me "you aren't supposed to be any way", "it's different for everyone", "take your time". It was pointed out to me that another struggle that I am having is that I am trying to be how I think I am "supposed" to be. I am putting myself on this timeline that I should be at this point now, this point in 2 weeks, here in 4. I am anticipating that timeline that I expect the rest of the world to put me on so I am trying to be preemptive on it, I suppose. And I try and try not to be so hard on myself, to give myself the luxury of time, to allow myself to have ups and downs that are exhausting and tell myself over and over again that you can't control your feelings. But then I am faced with the fact that everyone else is moving forward but I feel as though I am stuck in my own pity and sorrow. Why doesn't anyone else need the time that I do, why are they able to go back to normal and I am still crying every other day, why can't I move forward? ...because I wasn't supposed to have to figure out how to live life without Angel, because she is supposed to be part of everything else that I did for the rest of my life. As of March 1st when we found out about our blessing we weren't supposed to have to prepare for anything other than how to change our lives to accommodate our baby living her life with us!
As for post-last-Tuesday, the 20th, and following-up with this Tuesday: I had a "good" rest of the week after that break down, spent a great weekend with my husband, but then woke up on Monday morning with that familiar empty feeling. That lump in my throat, the emptiness in my stomach and pain in my heart that has become all too familiar. And of course comes the frustration that I have fallen again and the confusion that comes with it because I don't know why. I KNOW that Angel is okay now, I KNOW that she is very much loved by her family in the sky, I KNOW that she has no pain and no worries and is being taken care of by the best people ever and I turn to convince myself to feel selfish because I want to be that person to make her feel that love no matter how great those hands are that are loving and caring for her which in turn makes me feel angry for feeling that way. It is one big vicious circle and one very big, uncontrollable and overwhelming emotional rollercoaster...I hate rollercoasters as a kid, I hate them now as an adult and this one is no different!
Finally, I have decided to proceed in searching for additional support. While it is necessary for me to use whatever means I can to make sense of as much as I can, I also find myself being out of character and my emotions and reactions being out of control in comparison to how "I used to be". Most importantly I find myself reacting in bad ways to those that I love the most. While I've been told I do that sub-consciously because I know that they will forgive me, I fear that one time I will do it and they won't forgive me and I can't risk losing something else that means so much to me. It isn't like me to react personally to those that I love and while I know that I am not the same person that I used to be I will not be that person either.
I continue to look for those magic words, that magic pill, the magic cure for "grieving pain" and still haven't found it. But I do have to give myself credit, as a great friend has told me, that those good days that I have had aren't a bad thing. It goes to prove that this won't last forever. It is going to get better and I have to give myself credit and allow myself to go through the motions to get through this. Without those encouraging words, I might begin to think that I am going to be in pain forever...
Tuesday, July 20, 2010
Monday, July 12, 2010
Frustrations and Discouragements
Well my first day back to work was less than successful for me :( I did go in and stayed until noon then went home after lunch feeling extremely frustrated and discouraged with myself for not being stronger and more able to focus and concentrate on my work, which made me even more angry at myself that I felt that way and not giving myself the benefit of time to get back into the swing of things. I hate that I am so hard on myself and don't allow myself the "flexibility" and tell myself that it is okay to not be 100% all of the time.
The rollercoaster is equally as exhausting as I try to digest and comprehend all of the information that I want to find about the translocation and our process for the future. There is so much stuff when you search for the syndrome (as much as anything else that you search for) and I still don't feel like I am educated enough but it really comes down to the fact that I don't have control over anything that happens from here as far as starting our family goes and I think that is what is most exhausting. There are so many unknowns and potential outcomes that I have no control over and no way of knowing what's next. Anyone that knows anything about me knows that when I don't have control over something that in itself ruins me in a sense.
We received the summary from our meeting with the genetics counselor and in an effort to share with anyone that is interested will post some of the high points from that meeting to help anyone that wants to be informed do just that without going through a lot of data that I have decided even the doctors don't understand. Angel had a translocation trisomy 13, an extra chromosome 13 as well as an extra chromosome 13 attached to her chromosome 14. During the last week before we had Angel, both Jay and I were tested for chromosome issues to determine if it was a "fluke" or hereditary and as I have mentioned I was notified that I have a balanced form of the translocation, meaning that one copy of my 13 and 14 chromosomes are stuck together (we all have two sets of each, one from each parent, for those that paid as little attention in biology as I did). Carrying this translocation places me at increased risk to conceive with the unbalanced translocation; while most of these pregnancies end in miscarriages, some (less than 1%...I have also come to HATE statistics!!) survive to 15 weeks gestation or longer (like our case...). It is "generally accepted that the chance to have another pregnancy that would survive beyond the 15 weeks is less than 1%" (again with the statistics...) and the risk at conception is higher resulting in an increase risk for miscarriage.
That, in a nutshell, is what information they were able to provide us with and that in itself is a lot to digest. But with all of the other information I am trying to process the best information (and most encouraging) is from the other members of the support group(s) that I have joined online. There are a couple that I have read on that have success stories and I try to find comfort and reassurance that we can and will have our family. It will not be an easy road, there will be other road blocks and I continue to try to gain strength and determination that I can do this, no matter what the costs or blocks that we are faced with. The doctors, from what I have heard and come to understand myself, don't know much about the translocations. There were a couple (different translocations of chromosomes) and they were told that they would never be able to have children and they have defeated those odds. I intend to do the same thing...I intend to get that strength and determination that so many of the other members of the groups have been able to do.
The rollercoaster is equally as exhausting as I try to digest and comprehend all of the information that I want to find about the translocation and our process for the future. There is so much stuff when you search for the syndrome (as much as anything else that you search for) and I still don't feel like I am educated enough but it really comes down to the fact that I don't have control over anything that happens from here as far as starting our family goes and I think that is what is most exhausting. There are so many unknowns and potential outcomes that I have no control over and no way of knowing what's next. Anyone that knows anything about me knows that when I don't have control over something that in itself ruins me in a sense.
We received the summary from our meeting with the genetics counselor and in an effort to share with anyone that is interested will post some of the high points from that meeting to help anyone that wants to be informed do just that without going through a lot of data that I have decided even the doctors don't understand. Angel had a translocation trisomy 13, an extra chromosome 13 as well as an extra chromosome 13 attached to her chromosome 14. During the last week before we had Angel, both Jay and I were tested for chromosome issues to determine if it was a "fluke" or hereditary and as I have mentioned I was notified that I have a balanced form of the translocation, meaning that one copy of my 13 and 14 chromosomes are stuck together (we all have two sets of each, one from each parent, for those that paid as little attention in biology as I did). Carrying this translocation places me at increased risk to conceive with the unbalanced translocation; while most of these pregnancies end in miscarriages, some (less than 1%...I have also come to HATE statistics!!) survive to 15 weeks gestation or longer (like our case...). It is "generally accepted that the chance to have another pregnancy that would survive beyond the 15 weeks is less than 1%" (again with the statistics...) and the risk at conception is higher resulting in an increase risk for miscarriage.
That, in a nutshell, is what information they were able to provide us with and that in itself is a lot to digest. But with all of the other information I am trying to process the best information (and most encouraging) is from the other members of the support group(s) that I have joined online. There are a couple that I have read on that have success stories and I try to find comfort and reassurance that we can and will have our family. It will not be an easy road, there will be other road blocks and I continue to try to gain strength and determination that I can do this, no matter what the costs or blocks that we are faced with. The doctors, from what I have heard and come to understand myself, don't know much about the translocations. There were a couple (different translocations of chromosomes) and they were told that they would never be able to have children and they have defeated those odds. I intend to do the same thing...I intend to get that strength and determination that so many of the other members of the groups have been able to do.
Wednesday, July 7, 2010
Dedicated to Angel from Daddy - "Angel Friend"
(Please pay no attention to the inappropriate graphic) but this song means a lot to Jay and he has dedicated it to his daughter and thinks of her everytime he hears it (and he listens to it often!)
Daddy loves you Angel!! (as does Mommy!!)
Dedicated to Angel from Grandma and Grandpa Lint
In loving memory of our little baby granddaughter....Angel Chlorine Cheryl Kern. Will love you always...but know you are well taken care of.
God saw you getting tired and a cure was not to be. So he put his arms around you and whispered "come to me". With tearful eyes i watched you, & saw you pass away. Although i loved you dearly, i couldnt make youstay. A golden heart stopped beating, hardworking hands at rest, God ...broke my heart to prove to me, he only ...takes the best. ...
Days are about 3:1
I take comfort in my good days beginning to outweigh my bad days...they are about 3 to 1 lately. I just might get through this! While I would like to say there weren't any doubts, if I did say that I would be lying. I was wondering if I would make it through with my sanity intact.
I continue to struggle with my ability to talk about my feelings and really hardly understand those feelings myself. I can go from good to bad faster than even I know how to deal with...let alone anyone that is around me...in particular, my husband. He does seem to keep up pretty well for the time being :) but I pity him for not knowing what he is going to deal with from one minute to the next. But then again, neither do I so I guess I can't pity him too much without pitying myself. I have never been one that is good at talking about my feelings...at least out loud...so I guess I have to be thankful for being able to write them down better than I am able to talk about them. At least then I write them down and I don't feel so incredibly stupid and no one can see if I am having a total melt down, yelling and screaming or crying my fool head off.
I have made the decision to return back to work next week. Not so much to get back in the swing of things like I have so many times been told lately but because I realized that the world does not stop (no matter how much I would like it to) and sitting here feeling sorry for myself isn't doing me any good either. I take a lot of comfort returning to work knowing that I have an amazing support system there as well. It will not be easy I am sure but I do have to continue with life and continue with the world no matter how much I dread it at times.
I have also taken a couple more steps in finding support and working to understand the terms that we have been dealt in the last few weeks. I joined a support group on Yahoo that has individuals dealing with the balanced translocations that was I diagnosed with as well as a couple of facebook pages. I also plan to join a support group at the hospital but that will come later on when Jay is ready to attend with me. While I know that I will never fully understand, like everyone else that I have spoken to, everything that is associated with Robertsonian Translocation, I am one that wants all the information I can get. There are so many unknowns and unforeseen things that comes along with this since Jay and I are still "child bearing". The translocation doesn't affect anything in life until the reproduction stages and those unknowns are the biggest fears of mine right now. There are people that go through numbers of miscarriages and some even infertility. The "controlled" life that I used to have and the fact that I knew when and where...well, that is something that I have to give up on now. But we are determined people, we are too damn stubborn to let this drag us down and take away our desires to have a family, and we want our family more than anything right now to have this detour stop us. Doesn't make it hurt any less, doesn't make me dread going into Target and passing by the one of what seems like hundreds of pregnant people or the aisles of kids toys and baby items that I should be buying right now, it doesn't make the anger that it should be me buying those things go away and it doesn't make my heart heal any faster, and it doesn't make me any less terrified about the road on that journey...but I am determined to get past this and my daughter would kick me in the ass if I thought any other way (as Jay continues to remind me on my bad days).
Three weeks ago today we said hello and good-bye and continue to miss Angel painfully and continuously. But we stick together and support one another (more so Jay supporting me than otherwise...). We continue to get stronger each day and find reasons to believe that we will make it through this and there will be some reason to this hell that we may never know or understand. We also continue to thank our support systems; our family and friends that have helped us through all of this. You certainly figure out who is true and who isn't and more than anything know not to take anything for granted!
"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."
I continue to struggle with my ability to talk about my feelings and really hardly understand those feelings myself. I can go from good to bad faster than even I know how to deal with...let alone anyone that is around me...in particular, my husband. He does seem to keep up pretty well for the time being :) but I pity him for not knowing what he is going to deal with from one minute to the next. But then again, neither do I so I guess I can't pity him too much without pitying myself. I have never been one that is good at talking about my feelings...at least out loud...so I guess I have to be thankful for being able to write them down better than I am able to talk about them. At least then I write them down and I don't feel so incredibly stupid and no one can see if I am having a total melt down, yelling and screaming or crying my fool head off.
I have made the decision to return back to work next week. Not so much to get back in the swing of things like I have so many times been told lately but because I realized that the world does not stop (no matter how much I would like it to) and sitting here feeling sorry for myself isn't doing me any good either. I take a lot of comfort returning to work knowing that I have an amazing support system there as well. It will not be easy I am sure but I do have to continue with life and continue with the world no matter how much I dread it at times.
I have also taken a couple more steps in finding support and working to understand the terms that we have been dealt in the last few weeks. I joined a support group on Yahoo that has individuals dealing with the balanced translocations that was I diagnosed with as well as a couple of facebook pages. I also plan to join a support group at the hospital but that will come later on when Jay is ready to attend with me. While I know that I will never fully understand, like everyone else that I have spoken to, everything that is associated with Robertsonian Translocation, I am one that wants all the information I can get. There are so many unknowns and unforeseen things that comes along with this since Jay and I are still "child bearing". The translocation doesn't affect anything in life until the reproduction stages and those unknowns are the biggest fears of mine right now. There are people that go through numbers of miscarriages and some even infertility. The "controlled" life that I used to have and the fact that I knew when and where...well, that is something that I have to give up on now. But we are determined people, we are too damn stubborn to let this drag us down and take away our desires to have a family, and we want our family more than anything right now to have this detour stop us. Doesn't make it hurt any less, doesn't make me dread going into Target and passing by the one of what seems like hundreds of pregnant people or the aisles of kids toys and baby items that I should be buying right now, it doesn't make the anger that it should be me buying those things go away and it doesn't make my heart heal any faster, and it doesn't make me any less terrified about the road on that journey...but I am determined to get past this and my daughter would kick me in the ass if I thought any other way (as Jay continues to remind me on my bad days).
Three weeks ago today we said hello and good-bye and continue to miss Angel painfully and continuously. But we stick together and support one another (more so Jay supporting me than otherwise...). We continue to get stronger each day and find reasons to believe that we will make it through this and there will be some reason to this hell that we may never know or understand. We also continue to thank our support systems; our family and friends that have helped us through all of this. You certainly figure out who is true and who isn't and more than anything know not to take anything for granted!
"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."
Thursday, July 1, 2010
Two Weeks seems like Two Seconds
It is hard to believe that two weeks ago we had to say good bye to our precious Angel. Two weeks ago that seems like only Two Seconds at times was the hardest day of my life but at the same time the best day of my life. I know that is hard to believe to many...especially those that have never had to go through something like this...but I have, in the past two weeks and really just came to terms with it myself in the last day or so, come to terms that while it is unfair, horribly sad, completely confusing and horrifying, that I was given the chance to hold my little girl. To see her beautiful face, her adorable ten fingers and ten toes, to kiss her and hug her and tell her goodbye and that I love her with all that I have. So many do not get that opportunity and my heart aches for them!! My heart is aching, I am sad beyond belief and confused as hell...but the fact that I got to hold my little girl and tell her that Mommy and Daddy really love her and are (unnecessarily) sorry that we couldn't help her...that is a true blessing!
I got to talk to someone today that I consider a friend via facebook...she told me that the only thing that will get someone through a time like this is Faith...I believe that through and through. I wasn't raised with religious background...I believe in God, I have always believed in God and done whatever I could and knew how to do to practice that...but church and praying was not something that I was taught how to do (if there is a "proper" way of doing so) and not something that I have ever been comfortable doing. In the past 4 weeks, I am practicing those ways. I am "speaking" to Him and hoping along the way I will do it the proper way, He will forgive me for not knowing and not practicing it often but that he will listen to me now and get me through this time as I have confidence that he will.
In addition to Him and my practices in the last few weeks, I cannot say thank you enough to all of my friends and family that has been there for us. All of the thoughts and prayers and love and support that we have received in the past few weeks in addition to the love that we have for each other, Jay and I wouldn't have gotten this far without it all.
Two weeks ago we had to say hello and goodbye in only a matter of minutes and even 14 days later the pain is as fresh as ever. Just when I think that I might be feeling a little better or might have a chance at getting through this and take whatever step is "supposed" to be next, I fall off again...BUT there is always someone there to pick me up, put me back on my feet to take the first step all over again. It doesn't help that I am way to hard on myself (as many know already) and that I expect too much of myself...that I expect to be back to "normal" and good as new. I set myself up for disappointment in those expectations because I am not even sure what "normal" is anymore let alone be able to feel it. But I do know that I am a determined, hard headed stubborn person just like my daughter was and I will be okay again...I will do what I need to do to be strong again...and I will never, ever be able to send enough thanks and gratitude to those that have been there to pick me up and put me back on my feet when I needed them!
Two seconds, Two minutes, Two Days, Two Weeks, Two Months, Two Years....nothing will replace with few hours that I got to hold my little girl and nothing will replace the love that I will have for her forever and ever! I love you Angel! Mommy and Daddy will always love you, remember you and you will never be replaced in our hearts! Forever and Ever!!
I got to talk to someone today that I consider a friend via facebook...she told me that the only thing that will get someone through a time like this is Faith...I believe that through and through. I wasn't raised with religious background...I believe in God, I have always believed in God and done whatever I could and knew how to do to practice that...but church and praying was not something that I was taught how to do (if there is a "proper" way of doing so) and not something that I have ever been comfortable doing. In the past 4 weeks, I am practicing those ways. I am "speaking" to Him and hoping along the way I will do it the proper way, He will forgive me for not knowing and not practicing it often but that he will listen to me now and get me through this time as I have confidence that he will.
In addition to Him and my practices in the last few weeks, I cannot say thank you enough to all of my friends and family that has been there for us. All of the thoughts and prayers and love and support that we have received in the past few weeks in addition to the love that we have for each other, Jay and I wouldn't have gotten this far without it all.
Two weeks ago we had to say hello and goodbye in only a matter of minutes and even 14 days later the pain is as fresh as ever. Just when I think that I might be feeling a little better or might have a chance at getting through this and take whatever step is "supposed" to be next, I fall off again...BUT there is always someone there to pick me up, put me back on my feet to take the first step all over again. It doesn't help that I am way to hard on myself (as many know already) and that I expect too much of myself...that I expect to be back to "normal" and good as new. I set myself up for disappointment in those expectations because I am not even sure what "normal" is anymore let alone be able to feel it. But I do know that I am a determined, hard headed stubborn person just like my daughter was and I will be okay again...I will do what I need to do to be strong again...and I will never, ever be able to send enough thanks and gratitude to those that have been there to pick me up and put me back on my feet when I needed them!
Two seconds, Two minutes, Two Days, Two Weeks, Two Months, Two Years....nothing will replace with few hours that I got to hold my little girl and nothing will replace the love that I will have for her forever and ever! I love you Angel! Mommy and Daddy will always love you, remember you and you will never be replaced in our hearts! Forever and Ever!!
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