I recently wrote about running my first 10k under extremely challenging weather conditions. The physical and mental strength and stamina I needed to run for one hour under those circumstances were significant to say the least. It didn't occur to me until I put that into written words how my life and personal circumstances fits into that same mindset right now.
I took on a new and very demanding volunteer opportunity at the end of last spring. Since then I've given it my all at the expense of my mental well being and so much time with my family. It is a good cause and one I would not continue with if I didn't strongly believe in its worth. Regardless it's taking a toll. I feel like it's just one catastrophe to the next and since I am the leader I end up having to clean up all the messes while trying to balance spinning plates on my head and both hands and sometimes a knee as well. I would never cut it in the circus. Too many broken plates.
Power of a written word is amazing. Day after day I feel like throwing in the towel, or rather, just taking all of these plates that I'm spinning and chucking them as hard as I possibly can into a brick wall. The satisfaction of seeing them shatter would be worth it. At least that's what I tell myself. For a few minutes or maybe even an hour that much would be true. But then I starting thinking about that 10k. It was a painful experience but the feelings that hit me when I crossed that finish line were so worth it. As an aside, it's awfully creepy to finish a 10k not anywhere near last place and have no one but the timer at the finish line and he was sitting in a pickup truck. Told you the weather was Bad that day!
I finished. I persevered and no one can take that away from me. I built a little bit onto myself that day. I pushed myself farther than I thought I could go. Better yet, I didn't push myself to the brink which means I have even more to give. Afterwards I was very cold and very wet but I felt good. I placed better than expected but in all honesty very few people actually ran the race and I was just slightly off my goal time which was awesome considering how freaking windy it was that day and that I ran the last three miles straight into that 45mph wind. My volunteer position goes until the end of this spring which leaves me with many more months and probably many more catastrophes. A year is a lot longer than an hour to spend under that kind of stress. But in reality I've been through much worse. I've carried two pregnancies that ended with me leaving a hospital without my son and at the cemetery so I just don't think this can compare to that in terms of badness. Not much can. Now that I've put a little more perspective in this situation I just need to keep telling myself I've been through worse and I can get through this too. In fact, I may even feel good when it's over. I can hope, right?
Thursday, October 31, 2013
Friday, October 25, 2013
There Are Lessons All Around Us
My five year old just finished watching Disney's The Lion King. I tuned in when an adult Simba returned to the Pridelands and faced his Uncle Scar for the first time since he left as a child because he believed he was responsible for his father Mufasa's death. Mufasa believes he will get rid of Simba and confesses that it was he, not Simba, who killed Mufasa.
That revelation after so many years of self doubt, sadness and guilt, had to have been mind blowing for Simba. He spent many years away from his home and away from his family and most importantly, not being his true self, because he lived in the shadow of all of those complicated emotions. I get that he's a cartoon lion, but come on, there's a lesson in there for all of us. Especially us. Carrying guilt in our hearts over the loss of our little ones can only stand in the way of us being able to be our true selves. It can separate us from family, friends and ourselves. Guilt is a corrosive emotion which can literally change us from the inside out.
To quote the great Pumba, "[Y]ou got to put your behind in your past" er, I guess I'm looking for Timon's correction, "You gotta put your past behind you". That doesn't mean forgetting, it doesn't mean completely letting go. Hold on to your little ones, always keep them close. But it does mean doing what we can to recognize any guilt we carry and to get out from under it's shadow.
That revelation after so many years of self doubt, sadness and guilt, had to have been mind blowing for Simba. He spent many years away from his home and away from his family and most importantly, not being his true self, because he lived in the shadow of all of those complicated emotions. I get that he's a cartoon lion, but come on, there's a lesson in there for all of us. Especially us. Carrying guilt in our hearts over the loss of our little ones can only stand in the way of us being able to be our true selves. It can separate us from family, friends and ourselves. Guilt is a corrosive emotion which can literally change us from the inside out.
To quote the great Pumba, "[Y]ou got to put your behind in your past" er, I guess I'm looking for Timon's correction, "You gotta put your past behind you". That doesn't mean forgetting, it doesn't mean completely letting go. Hold on to your little ones, always keep them close. But it does mean doing what we can to recognize any guilt we carry and to get out from under it's shadow.
Saturday, October 19, 2013
When I Realized I Am Somewhat Healed
As I'm sure many of you know, this past Tuesday, October 15th, was Pregnancy and Infant Loss Remembrance Day. I knew that too but I didn't actually realize it until after 10pm that evening and even then I didn't come to that realization on my own. I happened to be reading a book with the local evening news on and bam! there was mention of pregnancy and infant loss remembrance. It got my attention immediately and just as quickly I felt like a schmutz. Here the whole day had passed and I did nothing.
It's okay, judge me. I know what an important day this is to the community of us who have lost pregnancies and/or infants. I never dreamed it would be possible to forget this day. While wondering how this could have happened, I realized that for me it is a signal that I've healed - some. I no longer want or need to announce my loss to the world which was a big part of my participation in October 15th in years past. I wanted everyone and anyone to know how much I had suffered. I needed to have some kind of explanation out there for how freakish I felt inside. As the days, months and years have passed I have assimilated that suffering into myself and at some point unknown to me it just became a non-defining part of me. I no longer define myself as bereaving mother though I know I will be one until the day I die. It is another hat that I wear underneath all of my others. It's a hat that I can't take off but one that I also don't show off. It's something I hold close to my heart like the other weekend when I ran my first 10k and woke up to a day of snow mixed with rain and 40mph+ wind gusts and instead of seeking refuge in my warm, comfortable home I went to that race and I ran it because I knew no matter how difficult it would be physically that I have suffered so much worse in my life and I would absolutely make it through. And I did.
I do so much for my boys now without even giving it conscious thought. They are my rock and keep me grounded when everything else is in the air. I just keep telling myself that I've suffered so much worse and I can get through whatever is dragging me down. I no longer need my pink and blue ribbon but I know exactly where it is. I'm sorry October 15th, I'm sorry that you didn't get the attention you deserve from me this year. I'm also incredibly grateful for those of you who gave it more attention that most, for those who make sure it is declared a day of remembrance, for those who place beautiful white roses and poems on all of the baby graves in my cemetery, for whoever got it on the local news that evening. Because October 15th is about more than me, Wyatt, or Eli - it's for recognition of the pain those of us who have lost little ones carry, it's about letting others know how and why they can help us bear that pain, and it's about letting anyone who has carried that pain know that it's okay to recognize the pain and that it's never too late. So I may be late, but to all those who have lost pregnancies or infants, God bless you, your families and your little ones.
It's okay, judge me. I know what an important day this is to the community of us who have lost pregnancies and/or infants. I never dreamed it would be possible to forget this day. While wondering how this could have happened, I realized that for me it is a signal that I've healed - some. I no longer want or need to announce my loss to the world which was a big part of my participation in October 15th in years past. I wanted everyone and anyone to know how much I had suffered. I needed to have some kind of explanation out there for how freakish I felt inside. As the days, months and years have passed I have assimilated that suffering into myself and at some point unknown to me it just became a non-defining part of me. I no longer define myself as bereaving mother though I know I will be one until the day I die. It is another hat that I wear underneath all of my others. It's a hat that I can't take off but one that I also don't show off. It's something I hold close to my heart like the other weekend when I ran my first 10k and woke up to a day of snow mixed with rain and 40mph+ wind gusts and instead of seeking refuge in my warm, comfortable home I went to that race and I ran it because I knew no matter how difficult it would be physically that I have suffered so much worse in my life and I would absolutely make it through. And I did.
I do so much for my boys now without even giving it conscious thought. They are my rock and keep me grounded when everything else is in the air. I just keep telling myself that I've suffered so much worse and I can get through whatever is dragging me down. I no longer need my pink and blue ribbon but I know exactly where it is. I'm sorry October 15th, I'm sorry that you didn't get the attention you deserve from me this year. I'm also incredibly grateful for those of you who gave it more attention that most, for those who make sure it is declared a day of remembrance, for those who place beautiful white roses and poems on all of the baby graves in my cemetery, for whoever got it on the local news that evening. Because October 15th is about more than me, Wyatt, or Eli - it's for recognition of the pain those of us who have lost little ones carry, it's about letting others know how and why they can help us bear that pain, and it's about letting anyone who has carried that pain know that it's okay to recognize the pain and that it's never too late. So I may be late, but to all those who have lost pregnancies or infants, God bless you, your families and your little ones.
Wednesday, October 9, 2013
How to Keep Swallowing That Lump In Your Throat
My post on grief relapse somehow didn't include one extremely important occurrence which I somehow forgot...the first Potter baby to survive. I've posted about this before and since it has received media attention because her mother is a member of Congress. It has caused hurt and controversy and of course, is a beacon of hope for those of us who have walked and are walking through the darkness of infant loss due to Potter's. Many suggest that little Abigail can't have true Potter's, that perhaps there is something that the public doesn't know, tissue that was not reported on, etc. Others believe it's a true miracle. Even the congresswoman herself touts it as a miracle.
I understand that point of view completely and if her baby had been my first Potter's baby I would probably say very similar things. But my reality is my own headstone with two little coffins buried in between my husband and my final resting places. So, I respectfully disagree that her daughter is a miracle. Her daughter is the product of medical patients who were able to access medical professionals who were willing to do something that went against the grain. Doctors who were willing to try something that appeared to be effective instead of standing behind the already delivered death sentence. Maybe that behavior is miraculous but I don't believe it should be. For any medical condition. Period. We should all have access to the best health care and to the doctors and other medical professionals who will listen to their patients, treat their patient's conditions and be willing to work with patients to achieve the best possible result in every situation.
I digress. This has bothered me on a very subconscious level EVERY SINGLE DAY since I first found out about it. I don't and I can't dwell on it because there is nothing I can do to bring Wyatt and Eli back. What I can do is spread the word and through my words encourage others to find answers and treatment. But this all just really kills me in so many ways. Of course I'm relapsing. I've lost 2 sons to this condition and the most recent only 2 years ago. Of course.
Monday, September 30, 2013
Relapse
Two years later and here I sit in front of my computer typing the word "relapse". I can't put my finger on it but I'm fairly certain that I am experiencing a relapse of grief (from which son, who knows, my guess is Eli). It's not that I find myself staring at pictures or holding their things. Not at all. I suspect it from the way I feel. The feelings of isolation, of no one understanding me, the feeling of just wanting to crawl into a shell for a while. The tears that are constantly beneath the surface but barely spill over.
I don't know the whys and the hows for this one, I am taken completely off guard. There are many possible triggers in my life right now so it could be any one or a combination. I've been feeling off for weeks now but it wasn't until after I was able to have a really good cry while looking at Eli's picture (my one and only really good cry for a long long time) that I admitted what my subconscious had been thinking to myself and out loud. I was pretty sure that the grieving process just wasn't done with me yet. My good friend the internet was very helpful in letting me know I'm not crazy and that perhaps I didn't fully grieve after Eli's death. That seems possible, if not likely, considering I had three young children to look after and in the grand scheme of things my life only stopped for a moment for me to grieve before I was plunged head first back into the harsh reality of daily life outside my cocoon of sadness. I can't pinpoint any particular thing that I didn't grieve but that's the funny thing about grief I suppose, it's different for all of us in every way, shape and form. I'm different than the first time I grieved the loss of a son so my grief was very different the second time around.
I'm writing this though to let you know that it can happen and that if it does, it's important to tell someone. I felt ashamed that this could be happening to me so far down the road but shame doesn't solve problems, it only creates more. I'm looking at this like a very small and untimely speed bump on my road and I will work my way over it just like I have all the others. One of many. One of many.
I don't know the whys and the hows for this one, I am taken completely off guard. There are many possible triggers in my life right now so it could be any one or a combination. I've been feeling off for weeks now but it wasn't until after I was able to have a really good cry while looking at Eli's picture (my one and only really good cry for a long long time) that I admitted what my subconscious had been thinking to myself and out loud. I was pretty sure that the grieving process just wasn't done with me yet. My good friend the internet was very helpful in letting me know I'm not crazy and that perhaps I didn't fully grieve after Eli's death. That seems possible, if not likely, considering I had three young children to look after and in the grand scheme of things my life only stopped for a moment for me to grieve before I was plunged head first back into the harsh reality of daily life outside my cocoon of sadness. I can't pinpoint any particular thing that I didn't grieve but that's the funny thing about grief I suppose, it's different for all of us in every way, shape and form. I'm different than the first time I grieved the loss of a son so my grief was very different the second time around.
I'm writing this though to let you know that it can happen and that if it does, it's important to tell someone. I felt ashamed that this could be happening to me so far down the road but shame doesn't solve problems, it only creates more. I'm looking at this like a very small and untimely speed bump on my road and I will work my way over it just like I have all the others. One of many. One of many.
Friday, September 27, 2013
Resiliency is Not Bouncing Back
I just read a magazine article about resiliency. Gold medal winning athletes who had faced great adversity (deaths, disease, injury in their lives) said that had they not faced those struggles they wouldn't have won their gold medals. They also admitted that during the adversity they had the same questions as I have, the "why" as in "why is this happening (to me)?" and the "how" as in "how am I going to make it through?"
Resiliency is the ability to become strong, healthy or successful again after bad happens according to Merriam-Webster dictionary. For physical matter it is the ability to return back to its original shape after being stretched out. The first definition is very separate from the second. The article went on to say that the United States military has now embraced mental resiliency training instead of just physical. It expanded the need for resiliency to all of us as training to handle great times of stress or difficulty that will inevitably arise in our lives. Resiliency is not just a trial by fire lesson, it can be taught and learned. (An internet search on this topic will yield lots of great information on resiliency which I highly recommend.)
Before losing Wyatt I realize that I had no real concept of loss or the resiliency it takes to survive that loss. I became resilient. It was a long process but one I started emerging on the other side I realized that if I could survive losing my first and only child (at that time), I could survive pretty much anything. It is a mantra I still cling to with double emphasis since I have now lost my only two sons. The resilience of surviving those extremely traumatic events in my life has left me forever wounded but has also imparted many gifts. One is confidence. The confidence I speak of above, where I know that I have survived some of the worst things that can happen to a person and I will continue to survive and find ways to thrive through difficulty. The words "bring it" have new meaning and intensity. That's not to say that I don't struggle and find myself crawling through the mud. I do. Sometimes often.
Another of those gifts is trust. I am, by nature, very distrusting. I'm a type A, do-it-yourself, kind of girl. So it is often difficult for me to trust others or trust that things will somehow work themselves out, whether for better or worse. I just want to make what I want to happen actually happen. I've talked about this many times. That's one of the reasons Potter's was so very devastating to me. Because there was NOTHING I could do at that time to make anything happen. I've learned to take pride in my values, the things that I hold dear to me, to do the best that I can and then....let it go. Gosh, that's so hard and a constant struggle for me. But I'm learning.
Trust and confidence haven't made my life rosy nor have they given me rose colored glasses. They are sources of inner strength and their voices are louder than the ones that tell me to stop when things get too hard. It's hard not to think of the great Timex phrase because I just keep on ticking no matter what comes my way. At the end of the day my body may feel broken and my spirit weak but come next morning I will get up and do it all over again. That is resilience. It's not bouncing back, it may be crawling, clawing or scratching your way out of whatever darkness has its grips on you and you may not find yourself "back" in the same place you started and that's okay. Resilience is only the ability to become strong, healthy or successful again after something bad happens and that something bad will have not only changed you but changed your view on the world around you. Resiliency is the ability to grow and adapt over time.
Resiliency is the ability to become strong, healthy or successful again after bad happens according to Merriam-Webster dictionary. For physical matter it is the ability to return back to its original shape after being stretched out. The first definition is very separate from the second. The article went on to say that the United States military has now embraced mental resiliency training instead of just physical. It expanded the need for resiliency to all of us as training to handle great times of stress or difficulty that will inevitably arise in our lives. Resiliency is not just a trial by fire lesson, it can be taught and learned. (An internet search on this topic will yield lots of great information on resiliency which I highly recommend.)
Before losing Wyatt I realize that I had no real concept of loss or the resiliency it takes to survive that loss. I became resilient. It was a long process but one I started emerging on the other side I realized that if I could survive losing my first and only child (at that time), I could survive pretty much anything. It is a mantra I still cling to with double emphasis since I have now lost my only two sons. The resilience of surviving those extremely traumatic events in my life has left me forever wounded but has also imparted many gifts. One is confidence. The confidence I speak of above, where I know that I have survived some of the worst things that can happen to a person and I will continue to survive and find ways to thrive through difficulty. The words "bring it" have new meaning and intensity. That's not to say that I don't struggle and find myself crawling through the mud. I do. Sometimes often.
Another of those gifts is trust. I am, by nature, very distrusting. I'm a type A, do-it-yourself, kind of girl. So it is often difficult for me to trust others or trust that things will somehow work themselves out, whether for better or worse. I just want to make what I want to happen actually happen. I've talked about this many times. That's one of the reasons Potter's was so very devastating to me. Because there was NOTHING I could do at that time to make anything happen. I've learned to take pride in my values, the things that I hold dear to me, to do the best that I can and then....let it go. Gosh, that's so hard and a constant struggle for me. But I'm learning.
Trust and confidence haven't made my life rosy nor have they given me rose colored glasses. They are sources of inner strength and their voices are louder than the ones that tell me to stop when things get too hard. It's hard not to think of the great Timex phrase because I just keep on ticking no matter what comes my way. At the end of the day my body may feel broken and my spirit weak but come next morning I will get up and do it all over again. That is resilience. It's not bouncing back, it may be crawling, clawing or scratching your way out of whatever darkness has its grips on you and you may not find yourself "back" in the same place you started and that's okay. Resilience is only the ability to become strong, healthy or successful again after something bad happens and that something bad will have not only changed you but changed your view on the world around you. Resiliency is the ability to grow and adapt over time.
Tuesday, August 27, 2013
What I Would Do With What I Know Now
Recently, I posted of the first believed survivor of Potter's Syndrome bilateral renal agenesis and now that I've had some time to digest the news I'd like to share my lay person's opinion on what I would do from her on if I ever heard the words "Potter's Syndrome" in my family again. I emphasize I am a lay person, not a medical professional. I'm just a mom who has carried two babies with Potter's Syndrome through to their full term births and then cradled them in my arms until their time on earth ended.
Based on precious Abigail's story here is what I would do. I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized. Then, I would ask that a repeat ultrasound be performed one week later without saline. At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection. If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks. If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.
I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance. The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life. I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs. I would make sure there was a medical plan in place to handle all possible anticipated outcomes.
We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.
Based on precious Abigail's story here is what I would do. I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized. Then, I would ask that a repeat ultrasound be performed one week later without saline. At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection. If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks. If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.
I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance. The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life. I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs. I would make sure there was a medical plan in place to handle all possible anticipated outcomes.
We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.
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