I've been doing a lot of "grief" reading since losing my daughter in March, mainly of stories that have been written by inspiring and strong women who have gone through a similar circumstance. In the beginning it was such a struggle to try to see the positive in this devastating situation that we, as a family, had just experienced, so I tried to look for an outlet and for people to turn too. I was so incredibly overwhelmed at the time with inconceivable amounts of unfamiliar emotions and honestly it felt like a constant battle within myself each day to put my feet on the ground, smile and just breathe at times. With the help of others though and through encouraging words I was able to see the light each day, some days brighter than others but nevertheless it was there. I truly believe that people are put into your life for a reason and in some way that person is going to inspire you and help you grow.
The night we found out Harper was sick my OB shared a very personal story of hers that I had never known. With tears in her eyes she told me that she, herself, had been in a very similar situation: "Kate, I don't know if I've ever told you this but I lost a child to a Trisomy abnormality in the past and I know this isn't easy but I'm here for you if you need anything. I remember the day we found out Andrew was sick and part of me kind of knew. I decided that we would just enjoy every minute we had together and I made the decision to carry him to term knowing that his life on earth would be very short. I will be doing nothing but praying for you and your family and I wish with all of my heart that you have a better ending than we did." As she was telling me this remarkable story I could feel that this was no longer my doctor talking to me, but rather a mother talking to a mother and wanting nothing more than to not watch someone go down the same path.
Now that I've experienced the loss of a child and I too have been forced to travel down a very similar path, my eyes have been awakened and I am just astounded by the courage and the strength that this woman has each and every day. I have thanked God countless times since the start of this unimaginable journey that I've had her by my side since that day. I mean, here is a mother who has lost a child, the hardest thing a mother will ever do in a lifetime and she is still willing to walk the path of unbearable pain with each and every one of us. Each time she chooses, to some extent, to relive the pain of that dreadful moment she experienced as well in the hopes of helping others stumble less. I remember telling myself a few days after Harper left his world that if she can do it, than so can I; because I know she will help me through it all. She saved my life the day Harper was born and in a way she has also helped save my soul and for that I am forever thankful.
Later, when I began to open up about Harper's passing the support and kindness from everyone around was astounding but most importantly it was the support from complete strangers whom I probably would have never met or talked to otherwise that spoke to me the strongest. I will never forget a particular mom who lost her son a year ago from hydrops writing me these exact words:
"There are sadly so many of us, but I have met some pretty amazing women. Women that I consider my closest allies, whom I doubt I will ever meet in person."
How much truth I have found spoken in these words. How had I been so blind to this devastating life changing experience that has effected so many? One thing I've noticed amongst all of us moms is that we all say the same thing: we are changed people now. We are undoubtedly connected to each other in a way we wish we weren't but at the same time, extremely thankful that we are. I wish there was a way to write down on a piece of paper exactly what one feels during this unimaginable journey but there simply isn't.
There's a book that sits on my nightstand since the first night that my doctor gave it to me. A book that I've read in its entirety and then some; a book titled "I Will Carry You." It is one of the most rewarding reads and the best interpretation I've seen thus far of sorting through these wild and crazy emotions during this time. I began reading this book about a week after my daughter left this world and while reading I noticed one particular line that took a forceful jab at my heart and kept bringing my eyes back to it so that I would read it over and over. It simply read...
"He cries because I can't see what He can."
I have to believe this is the absolute truth. I have to believe that there is a bigger purpose for this to have all happened and that Harper had a much bigger role to play than I could have ever imagined for her. I have to believe that there is more to this world than the physical objects we see everyday because it is through that belief that I know I will get to hold this amazing human being once again. She was Adam and I's "new beginning to this new life" and while it's not the life we would have chosen for her we've talked about how she lives on within us and how nothing can ever change that.
I'm now ready to take my experiences and my emotions from all of this and move onwards to my newest read by another strong woman whose daughter was also diagnosed with non immune hydrops while in utero. Through the sales of her book, "My Journey with an Angel" and through her non profit organization she is raising money to encourage research in this rather "unknown" field of fetal abnormality. I pray that one day the abnormality that took Harper's life will hopefully not take that of another. I pray we discover more and more regarding this particularly sad diagnosis and that we begin to see more lives saved and I hope one day that I too will find a way to help join the fight against hydrops.
For now though, until that path is decided, I will pick up another broken piece on this unimaginable journey and place it thoughtfully where it belongs knowing that each completed piece brings me that much closer to my loving daughter.
Tuesday, April 26, 2016
Friday, April 22, 2016
"Begin each day with a grateful heart." : The day that started it all...
The day that changed it all. I can remember every little detail as if it happened five minutes ago, a day that no mother wants to ever imagine let alone actually take part in. A day that darkness would try to prevail: February 24, 2016.
That day started just like any other day, except for one thing... I just didn't feel well. I remember telling my husband that morning "Something just doesn't feel right, I think I'm going to stay home and just rest today." I was worried that maybe I had contracted the awful, horrible, terrible flu bug that the rest of my family had so kindly shared the previous weekend when we were with them.
I had a previously scheduled appointment with the nurse at my OB office that afternoon to check my blood pressure and protein. I figured I would sleep it off that morning and if I still didn't feel well I could just fill them in that afternoon. The appointment started off just like any other appointment except for one thing... I still just didn't feel well. My nurse appointment turned into seeing my OB which turned into, "I'm going to send you to the hospital to run a few labs and tests. You can go home first and get some things or you can go straight there. I'm thinking everything will be fine and you'll be home in a couple of hours but let's just double check some things. I'll meet you there shortly.
I will never forget that moment when this "average day" took a quick spin, when my OB walked into the room at the hospital and told me she had called a Fetal Monitoring Specialist to come perform a follow up ultrasound because something didn't seem right with the one that was just performed. She explained to me that the general sonographer found extra fluid in places he shouldn't have but that she didn't really "trust" these readings because nothing was really adding up so to just sit tight and she would be back to follow up. At that moment I felt my heart racing a little faster so I began to talk myself down "Kate, don't worry, your doctor thinks it's a false reading, everything will be fine." Nevertheless, I remembered thinking it was time to text Adam and tell him he might want to start making his way towards the hospital as soon as someone arrived to watch Levi just to be safe.
The specialist arrived about 30 minutes later and began performing the ultrasound. I remember not watching the screen where he was examining every aspect of my daughter (which normally I would LOVE to watch) but instead I found myself studying his face and attempting to read every emotion or expression that crossed it. Nothing. Not once did he look away from that screen. I remember him asking me halfway through the exam, without looking up "Have you ever been tested for Down syndrome?" and how quickly I responded "No, my husband and I opted out of the early testing." Adam and I always opted out of any of the extra testing because we knew we would love this baby no matter what came our way. My thoughts than shifted gears into "Ok Kate, he's going to tell you Harper has Down Syndrome, definitely a game changer but no biggie, we got his." It was then that the most intense moment of the day happened. It was the moment when the specialist finally looked up from the screen he had been so intently staring at. It was the moment when he would look me straight in the eyes and I would see on his face an expression I will never forget, an expression I could tell he was trying to put forth with everything he had and one that I can only describe as his "doctor face". Later I would come to find out that he was most certainly holding back tears.
"Your daughter has what we call non-immune hydrops which for her entails fluid around the lungs, heart and under her skin. I have to be straightforward and tell you this is a very bad prognosis and this is not a place I would want any parent to be in. You and your husband are going to have a lot of hard choices you are going to have to make in the near future. If she does survive this, even the road to recovery will be very long and hard. I'm so sorry".
I'm sure there must have been more to what was said just then, but the rest was really just a haze. For the first time in my life I literally felt my world collapse as I then too had to put on my "doctor face" and try to make sense of everything he had just told me. It took every muscle in my body to hold me up on that table, to not fall to the ground and weep uncontrollably. I knew I had to be strong in that moment, for myself and for my daughter, Harper, I knew as a Mom the best thing I could do for my daughter now was to remain as calm and optimistic as my spirit would allow. All I can remember thinking is "how could this be happening?. The only text I could muster up enough courage to send to Adam looked like this....
"Bad. You almost here yet? I don't think I can tell you over the phone."
A few minutes later Adam came through my room door and the flood of tears I had been holding back were released. I barely got the sentence out that our daughter may not survive when the specialist walked back into the room. Earlier I probably would have cringed at the thought of him coming back, associating him with nothing but sadness yet at this moment I was relieved because the thought of having to tell Adam the whole story out loud was unfathomable. I felt that the more I said these words out loud than the more they would become real and for now I wanted to believe that the world around me was just a horrendous dream that in the morning I would wake up from and all would be forgotten; that everything would just be ok.
With the passing of our daughter 4.5 weeks later and with about a month of mourning underway I've begun to the see the world from a much different perspective. I find myself seeking out the light because it is there that I feel pieces of her. I look for the joy each day, the laughter, and the good moments because it is there that I feel a slight tug at my heart; where I find myself saying "This is Harper". It would be so easy to dwell in the overwhelming darkness and sadness that surrounds me but it's only there that I remember her, I can't feel her. I want so much more in this life than just "thoughts" of my daughter. I have added a new saying in our house, "Begin each day with a grateful heart" because it is through that heart that we can begin to accept God's grace and mercy. He never said this unimaginable journey would be easy but He did promise to walk alongside us during each step we take. When seeking the light I am able to live this embodied life more fully and I am one step and one breath closer to being able to hold my baby girl once again. I see now that Levi, my son, is my reason for living this earthly life to the fullest and Harper, my beautiful daughter, is my reason to look forward for what's to come.
So with that I will pick up another broken piece on this unimaginable journey of life and place it carefully and thoughtfully where it belongs.
That day started just like any other day, except for one thing... I just didn't feel well. I remember telling my husband that morning "Something just doesn't feel right, I think I'm going to stay home and just rest today." I was worried that maybe I had contracted the awful, horrible, terrible flu bug that the rest of my family had so kindly shared the previous weekend when we were with them.
I had a previously scheduled appointment with the nurse at my OB office that afternoon to check my blood pressure and protein. I figured I would sleep it off that morning and if I still didn't feel well I could just fill them in that afternoon. The appointment started off just like any other appointment except for one thing... I still just didn't feel well. My nurse appointment turned into seeing my OB which turned into, "I'm going to send you to the hospital to run a few labs and tests. You can go home first and get some things or you can go straight there. I'm thinking everything will be fine and you'll be home in a couple of hours but let's just double check some things. I'll meet you there shortly.
I will never forget that moment when this "average day" took a quick spin, when my OB walked into the room at the hospital and told me she had called a Fetal Monitoring Specialist to come perform a follow up ultrasound because something didn't seem right with the one that was just performed. She explained to me that the general sonographer found extra fluid in places he shouldn't have but that she didn't really "trust" these readings because nothing was really adding up so to just sit tight and she would be back to follow up. At that moment I felt my heart racing a little faster so I began to talk myself down "Kate, don't worry, your doctor thinks it's a false reading, everything will be fine." Nevertheless, I remembered thinking it was time to text Adam and tell him he might want to start making his way towards the hospital as soon as someone arrived to watch Levi just to be safe.
The specialist arrived about 30 minutes later and began performing the ultrasound. I remember not watching the screen where he was examining every aspect of my daughter (which normally I would LOVE to watch) but instead I found myself studying his face and attempting to read every emotion or expression that crossed it. Nothing. Not once did he look away from that screen. I remember him asking me halfway through the exam, without looking up "Have you ever been tested for Down syndrome?" and how quickly I responded "No, my husband and I opted out of the early testing." Adam and I always opted out of any of the extra testing because we knew we would love this baby no matter what came our way. My thoughts than shifted gears into "Ok Kate, he's going to tell you Harper has Down Syndrome, definitely a game changer but no biggie, we got his." It was then that the most intense moment of the day happened. It was the moment when the specialist finally looked up from the screen he had been so intently staring at. It was the moment when he would look me straight in the eyes and I would see on his face an expression I will never forget, an expression I could tell he was trying to put forth with everything he had and one that I can only describe as his "doctor face". Later I would come to find out that he was most certainly holding back tears.
"Your daughter has what we call non-immune hydrops which for her entails fluid around the lungs, heart and under her skin. I have to be straightforward and tell you this is a very bad prognosis and this is not a place I would want any parent to be in. You and your husband are going to have a lot of hard choices you are going to have to make in the near future. If she does survive this, even the road to recovery will be very long and hard. I'm so sorry".
I'm sure there must have been more to what was said just then, but the rest was really just a haze. For the first time in my life I literally felt my world collapse as I then too had to put on my "doctor face" and try to make sense of everything he had just told me. It took every muscle in my body to hold me up on that table, to not fall to the ground and weep uncontrollably. I knew I had to be strong in that moment, for myself and for my daughter, Harper, I knew as a Mom the best thing I could do for my daughter now was to remain as calm and optimistic as my spirit would allow. All I can remember thinking is "how could this be happening?. The only text I could muster up enough courage to send to Adam looked like this....
"Bad. You almost here yet? I don't think I can tell you over the phone."
A few minutes later Adam came through my room door and the flood of tears I had been holding back were released. I barely got the sentence out that our daughter may not survive when the specialist walked back into the room. Earlier I probably would have cringed at the thought of him coming back, associating him with nothing but sadness yet at this moment I was relieved because the thought of having to tell Adam the whole story out loud was unfathomable. I felt that the more I said these words out loud than the more they would become real and for now I wanted to believe that the world around me was just a horrendous dream that in the morning I would wake up from and all would be forgotten; that everything would just be ok.
With the passing of our daughter 4.5 weeks later and with about a month of mourning underway I've begun to the see the world from a much different perspective. I find myself seeking out the light because it is there that I feel pieces of her. I look for the joy each day, the laughter, and the good moments because it is there that I feel a slight tug at my heart; where I find myself saying "This is Harper". It would be so easy to dwell in the overwhelming darkness and sadness that surrounds me but it's only there that I remember her, I can't feel her. I want so much more in this life than just "thoughts" of my daughter. I have added a new saying in our house, "Begin each day with a grateful heart" because it is through that heart that we can begin to accept God's grace and mercy. He never said this unimaginable journey would be easy but He did promise to walk alongside us during each step we take. When seeking the light I am able to live this embodied life more fully and I am one step and one breath closer to being able to hold my baby girl once again. I see now that Levi, my son, is my reason for living this earthly life to the fullest and Harper, my beautiful daughter, is my reason to look forward for what's to come.
So with that I will pick up another broken piece on this unimaginable journey of life and place it carefully and thoughtfully where it belongs.
Monday, April 18, 2016
GRIEF will force you to look deep within yourself
GRIEF is a very heavy and cynical word for most, but I've chosen not to mistake this word for weakness or darkness but rather look upon it as strength and hope for the unexpected journey that has been set forth in front of me. Grief has forced me to look deep within myself, it has enabled me to find a courage and passion I never knew existed.
Today is the day I should be getting Harper all dolled up, pretty in pink and flowing in bows with a sign that reads "One Month" placed carefully and thoughtfully next to her while praying that for these next few minutes she stays as happy and content as possible. Unfortunately I'm not living in that perfectly planned out world, instead I'm living in what feels like the longest roller coaster ride that I can't seem to get off of and I'm praying for sweet Harper in a much different way. Today I am overwhelmed by grief.
Within the chaos, the unpredicted emotions and the sadness though I find peace in knowing that I can't think of a single moment out of the day that I don't feel her within my heart; I can't think of a single memory that she isn't a part of. She will always undoubtedly be a part of me and with that I take every movement I make or decision to be had with her guidance and with her strength. I use these moments because I've come to realize these uncertain emotions and intuitions are there to help guide me forward with what I now call my "new norm".
I would be lying though if I didn't say that there are very painful moments where I wish with every bone in my body that selfishly she was here; that I could hold her and sing to her and make her laugh. I long for the opportunity to have watched the bond between her older brother and her unravel and to see the amazing person I know she was destined to be. But then I am reminded in so many ways that I will get to experience moments like these with my daughter just in a new perspective. My daughter, Harper, was put here for a reason and I know God chose her as one of His angels in heaven for a much bigger purpose. I am overwhelmed with joy knowing that Levi will have one of the strongest Guardian Angels watching over him always. I am certain this is who my daughter was destined to be and this is the flowering relationship her and I will build throughout the years.
Today reaffirms me that we are not a family of three, but a strong force of four fighting on in the sorrow of death. Today I will dig a little deeper within myself and today I will find a broken piece and place it skillfully where it belongs in this unimaginable journey I call life.
Today is the day I should be getting Harper all dolled up, pretty in pink and flowing in bows with a sign that reads "One Month" placed carefully and thoughtfully next to her while praying that for these next few minutes she stays as happy and content as possible. Unfortunately I'm not living in that perfectly planned out world, instead I'm living in what feels like the longest roller coaster ride that I can't seem to get off of and I'm praying for sweet Harper in a much different way. Today I am overwhelmed by grief.
Within the chaos, the unpredicted emotions and the sadness though I find peace in knowing that I can't think of a single moment out of the day that I don't feel her within my heart; I can't think of a single memory that she isn't a part of. She will always undoubtedly be a part of me and with that I take every movement I make or decision to be had with her guidance and with her strength. I use these moments because I've come to realize these uncertain emotions and intuitions are there to help guide me forward with what I now call my "new norm".
I would be lying though if I didn't say that there are very painful moments where I wish with every bone in my body that selfishly she was here; that I could hold her and sing to her and make her laugh. I long for the opportunity to have watched the bond between her older brother and her unravel and to see the amazing person I know she was destined to be. But then I am reminded in so many ways that I will get to experience moments like these with my daughter just in a new perspective. My daughter, Harper, was put here for a reason and I know God chose her as one of His angels in heaven for a much bigger purpose. I am overwhelmed with joy knowing that Levi will have one of the strongest Guardian Angels watching over him always. I am certain this is who my daughter was destined to be and this is the flowering relationship her and I will build throughout the years.
Today reaffirms me that we are not a family of three, but a strong force of four fighting on in the sorrow of death. Today I will dig a little deeper within myself and today I will find a broken piece and place it skillfully where it belongs in this unimaginable journey I call life.
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