Dear Gabby,
Today it has been six months since you left. Sometimes I think I am doing ok, but then I get overwhelmed with grief and its almost impossible to function. I'm not really sure if that is ever going to change or not. There isn't a minute that goes by where I don't think of you. I find myself seeing so many little ones in public and all I do is think of what you would be doing now.
Anymore, I just find life so difficult. It is so hard to continue without you by my side. Sometimes I wonder how long it will be until I am with you again. The other day someone was predicting the end of the world and I didn't even care. I'm not sure if that is normal or not. All I do is think of being with you. Sometimes I can feel your presence, but I haven't lately. I guess you must be busy playing with all the little children in heaven.
Gabby, I think of you all the time in heaven and wonder what it must be like up there. I wonder what you are doing all the time and wonder if you ever leave me signs. I love you so much Gabby.
I have to go now, I just cant continue your letter baby.
Thursday, May 26, 2011
Tuesday, May 17, 2011
Journey of the Bees: The Brayden Alexander Global Foundation For Hydranencephaly
http://networkedblogs.com/hVyOK
Saturday, April 23, 2011
A New Life: It's Been Nearly Five Months
In just a few short days it will be five months since I entered into a new life. A life far from my old one, a life filled with so much emotion and confusion. A life that leaves you asking the question "why"...a question that remains unanswered.
April 26, 2011 will mark the five month anniversary of our daughter Gabby's death. It was and will, remain my most life altering experience. This post is clearly about my feelings as a bereaved parent. These are my feelings. My feelings may be quite different then other parents suffering such a loss. One person's grief may not be the same as others.
In the first few weeks after Gabby's passing, life was quite a blur. It took every ounce of energy I had to get out of bed. I remember waking up every morning thinking, I need to feed Gabby, get her dressed, and wondered what appointments we had for that day. It hit me like a ton of bricks when I remembered that I no longer needed to do these things. Once, I was able to get the strength to get out of bed, I would have to find the strength to get showered and dressed. These easy day to day routines I once took advantage of, became a chore and became very difficult. During this time, I was surrounded by family. Family would do everything they could to keep me active by taking me places and just being there. At times, I wanted to be surrounded by family, then the next minute I just wanted everyone to leave me alone.
A month after Gabby passed, was my first holiday....Christmas. As the holiday drew closer, I wanted so much to just crawl in a hole and not come out until it was over. The thought of a holiday where family was all together celebrating a joyous time was out of the question. How could I be a part of a holiday function where family would be together? There was no way, I would be able to tolerate seeing so many of the young kids opening gifts and getting so excited when my daughter was not in attendance and never would be again. I refused to celebrate Christmas as it was just too painful. Instead, I spent my Christmas at the cemetery talking with Gabby.
One week after Christmas came yet another holiday....New Year's. Once again, I became withdrawn and depressed. A New Year was going to soon begin and it would be a New Year without my daughter to have by my side. Once again, as people went out to celebrate the New Year and the joy and new changes that it may bring, I refused. Instead I found comfort in just sleeping and once again ignoring the fact that another holiday had come and passed.
Faith, a topic I once found comfort in became something I questioned. Why, God??? Why did you take my daughter from me? Why did you let her die?? I began to question God's motives and wondered why we lived in a world filled with so much pain and sorrow. I began to ask the question: "If you love us so much God, then why is there so much pain in the world"? I became so angry at people who stated that it was "God's will". How dare they say it was "God's Will" to take my daughter. I use to think to myself, "if it was God's Will, then I don't want any part of a God that would take a child away from their parent". I became so overwhelmed with guilt over this topic that I found myself visiting a Priest. I will never forget the Priest's words as he told me "It is was not God's Will to take your child. He did not cause your child's condition, biology caused her condition. He doesn't purposefully, nor willingly take a child from their parents. He doesn't cause the tragedies in this world, yet he is there in the end". At five months, I am still struggling with questions, but I have begin to find my strength once again in God.
Lonlieness: As my journey began, I was surrounded by so many people. I didn't quite feel the affects of lonlieness. As my grief progress so does the lonliness. It is amazing how you can be surrounded by so many people, yet feel so alone in the world. I am not sure why this feeling did not have an impact on me early on. Perhaps, it is because in the beginning we are overwhelmed with the comfort of cards, visitors, and phone calls. Then as time goes on, people move on and you no longer recieve the cards, visitors, or phone calls. You begin to wonder, did everyone forget? No one now mentions my child although the pain of losing her is still so hard. I can't even begin to tell you how much it means to me when someone will just send me an email or a text message that simply says "thinking of you today". Those four simple words are sometimes the words that make a horrible day into a good day. It lets me know that I am still being thought of and so is my child. Those little words help ease the lonliness I often feel.
One of the hardest feelings I go through is just sadness. Sadness, from missing her so much. It is amazing how much I find myself thinking of Gabby. I honestly think of her every minute of everyday. I think about her in heaven and what she is doing. I think about her life on earth and the good and bad times we had. Til this day it is almost impossible to look at baby clothes or other items because of the pain it brings me of missing her. Songs will come on the radio that will just make you burst into tears because it reminds me of her. One of the songs I hear frequently is "The Climb" by Miley Cyrus. I always said that was Gabby's theme song because she had so many obstacles to overcome. Gabby and I use to listen to it often and it was even the first song that was played when you opened her blog. It is amazing how you can be so full of smiles and having a decent day, then in a split second you are hysterically crying and screaming "Why"? The sadness is by far the most difficult part of my grieving. It hits often and in a split second.
Many people tell you that you will get over it, but I know I will never get over it. I will get through it, but never over it. I will always be forever changed and I will always go through my time of grieving. Nearly five months into my grief and I am beginning to find that the pain does ease. I am aware that the pain of losing my child will always be present, and that the pain will forever be a part of me.
April 26, 2011 will mark the five month anniversary of our daughter Gabby's death. It was and will, remain my most life altering experience. This post is clearly about my feelings as a bereaved parent. These are my feelings. My feelings may be quite different then other parents suffering such a loss. One person's grief may not be the same as others.
In the first few weeks after Gabby's passing, life was quite a blur. It took every ounce of energy I had to get out of bed. I remember waking up every morning thinking, I need to feed Gabby, get her dressed, and wondered what appointments we had for that day. It hit me like a ton of bricks when I remembered that I no longer needed to do these things. Once, I was able to get the strength to get out of bed, I would have to find the strength to get showered and dressed. These easy day to day routines I once took advantage of, became a chore and became very difficult. During this time, I was surrounded by family. Family would do everything they could to keep me active by taking me places and just being there. At times, I wanted to be surrounded by family, then the next minute I just wanted everyone to leave me alone.
A month after Gabby passed, was my first holiday....Christmas. As the holiday drew closer, I wanted so much to just crawl in a hole and not come out until it was over. The thought of a holiday where family was all together celebrating a joyous time was out of the question. How could I be a part of a holiday function where family would be together? There was no way, I would be able to tolerate seeing so many of the young kids opening gifts and getting so excited when my daughter was not in attendance and never would be again. I refused to celebrate Christmas as it was just too painful. Instead, I spent my Christmas at the cemetery talking with Gabby.
One week after Christmas came yet another holiday....New Year's. Once again, I became withdrawn and depressed. A New Year was going to soon begin and it would be a New Year without my daughter to have by my side. Once again, as people went out to celebrate the New Year and the joy and new changes that it may bring, I refused. Instead I found comfort in just sleeping and once again ignoring the fact that another holiday had come and passed.
Faith, a topic I once found comfort in became something I questioned. Why, God??? Why did you take my daughter from me? Why did you let her die?? I began to question God's motives and wondered why we lived in a world filled with so much pain and sorrow. I began to ask the question: "If you love us so much God, then why is there so much pain in the world"? I became so angry at people who stated that it was "God's will". How dare they say it was "God's Will" to take my daughter. I use to think to myself, "if it was God's Will, then I don't want any part of a God that would take a child away from their parent". I became so overwhelmed with guilt over this topic that I found myself visiting a Priest. I will never forget the Priest's words as he told me "It is was not God's Will to take your child. He did not cause your child's condition, biology caused her condition. He doesn't purposefully, nor willingly take a child from their parents. He doesn't cause the tragedies in this world, yet he is there in the end". At five months, I am still struggling with questions, but I have begin to find my strength once again in God.
Lonlieness: As my journey began, I was surrounded by so many people. I didn't quite feel the affects of lonlieness. As my grief progress so does the lonliness. It is amazing how you can be surrounded by so many people, yet feel so alone in the world. I am not sure why this feeling did not have an impact on me early on. Perhaps, it is because in the beginning we are overwhelmed with the comfort of cards, visitors, and phone calls. Then as time goes on, people move on and you no longer recieve the cards, visitors, or phone calls. You begin to wonder, did everyone forget? No one now mentions my child although the pain of losing her is still so hard. I can't even begin to tell you how much it means to me when someone will just send me an email or a text message that simply says "thinking of you today". Those four simple words are sometimes the words that make a horrible day into a good day. It lets me know that I am still being thought of and so is my child. Those little words help ease the lonliness I often feel.
One of the hardest feelings I go through is just sadness. Sadness, from missing her so much. It is amazing how much I find myself thinking of Gabby. I honestly think of her every minute of everyday. I think about her in heaven and what she is doing. I think about her life on earth and the good and bad times we had. Til this day it is almost impossible to look at baby clothes or other items because of the pain it brings me of missing her. Songs will come on the radio that will just make you burst into tears because it reminds me of her. One of the songs I hear frequently is "The Climb" by Miley Cyrus. I always said that was Gabby's theme song because she had so many obstacles to overcome. Gabby and I use to listen to it often and it was even the first song that was played when you opened her blog. It is amazing how you can be so full of smiles and having a decent day, then in a split second you are hysterically crying and screaming "Why"? The sadness is by far the most difficult part of my grieving. It hits often and in a split second.
Many people tell you that you will get over it, but I know I will never get over it. I will get through it, but never over it. I will always be forever changed and I will always go through my time of grieving. Nearly five months into my grief and I am beginning to find that the pain does ease. I am aware that the pain of losing my child will always be present, and that the pain will forever be a part of me.
Tuesday, March 29, 2011
Thank You God
When Gabby was first born and we found out her diagnosis of Hydranencephaly, there were many questions that were asked by family, friends, and people we met throughout her life. The question most frequently asked was "do you wish you would've known about her condition sooner"? Til this day, my answer remains the same...."No". Some of my most joyful times with Gabby was when I was pregnant.
Being pregnant with Gabby was the most wonderful experience in my life. We found out at 20 weeks that we were going to be the proud parents of a beautiful baby girl. I was on top of the world, not only was I going to be a mom, but I was having a daughter. My dream had finally come true. The gentle feel of her moving inside me was the most amazing feeling ever. Mommy and Daddy would spend everynight talking to her and letting Gabby know how much we loved her and couldn't wait for her arrival. I enjoyed all the joyous moments that expecting mothers have such as decorating her room, the baby showers, shopping for Gabby, and mostly her arrival.
Three days after Gabby was born, we found that the dreams we once had for Gabby, were now shattered by a horrifying diagnosis. We were given no hope for our baby girl as the doctors told us not to get attached, and that she would be gone within months. From that moment on, the joy I felt during my pregnancy was gone and was replaced with sadness and grief. Instead of thinking of our daughter's future, all I could think about was planning a funeral. I kept asking "why me", "why Gabby", "what did she do to deserve this". I spent days holding her and crying and always thinking the worst. I became so depressed and filled with anxiety that I needed medication to help me get through each day. Everyday we feared the inevitable. I became so obsessed with keeping her healthy that I sheltered her from life. Rarely did she leave our home because of the fear of her getting ill. I didn't allow her to play with other children in fear of germs, and going into public places was prohibited because I feared illness so much.
I spent all of Gabby's living years grieving for her and because of this I prohibited her from living life to the fullest. I was selfish and didn't allow her to do many things because of my fear. The only time I allowed her to experience life was when I was pregnant with her. I never sheltered her while I was pregnant. She experienced the world as I did. I can't help but thank God for not allowing us to know sooner. If I did, I know I would've began my grieving sooner and never enjoyed the many things I did while I was pregnant.
Special Note: Try not to grieve the living years, be joyous for every minute your child is alive and well. ~Jennifer Bauer
Being pregnant with Gabby was the most wonderful experience in my life. We found out at 20 weeks that we were going to be the proud parents of a beautiful baby girl. I was on top of the world, not only was I going to be a mom, but I was having a daughter. My dream had finally come true. The gentle feel of her moving inside me was the most amazing feeling ever. Mommy and Daddy would spend everynight talking to her and letting Gabby know how much we loved her and couldn't wait for her arrival. I enjoyed all the joyous moments that expecting mothers have such as decorating her room, the baby showers, shopping for Gabby, and mostly her arrival.
Three days after Gabby was born, we found that the dreams we once had for Gabby, were now shattered by a horrifying diagnosis. We were given no hope for our baby girl as the doctors told us not to get attached, and that she would be gone within months. From that moment on, the joy I felt during my pregnancy was gone and was replaced with sadness and grief. Instead of thinking of our daughter's future, all I could think about was planning a funeral. I kept asking "why me", "why Gabby", "what did she do to deserve this". I spent days holding her and crying and always thinking the worst. I became so depressed and filled with anxiety that I needed medication to help me get through each day. Everyday we feared the inevitable. I became so obsessed with keeping her healthy that I sheltered her from life. Rarely did she leave our home because of the fear of her getting ill. I didn't allow her to play with other children in fear of germs, and going into public places was prohibited because I feared illness so much.
I spent all of Gabby's living years grieving for her and because of this I prohibited her from living life to the fullest. I was selfish and didn't allow her to do many things because of my fear. The only time I allowed her to experience life was when I was pregnant with her. I never sheltered her while I was pregnant. She experienced the world as I did. I can't help but thank God for not allowing us to know sooner. If I did, I know I would've began my grieving sooner and never enjoyed the many things I did while I was pregnant.
Special Note: Try not to grieve the living years, be joyous for every minute your child is alive and well. ~Jennifer Bauer
Tuesday, February 8, 2011
Our Precious Gift: Unconditional Love
On June 24, 2009, our family was blessed with the most amazing gift. It was the gift of Gabrielle “Gabby” Jane, our beautiful baby born with a terminal condition of Hydranencephaly. Although, Gabby’s life on this earth was brief she brought us something that we will cherish forever…Unconditional Love.
I go back to the days in June 2009, when Jason and I met with an intimidating amount of doctors. We were taken to a conference room in Children’s Hospital and took our seats at the table surrounded by these numerous Physicians. I sat at that table frozen as the doctors began throwing out their questions. “Are you aware of the severity of your child’s condition”, “Are you prepared to take care of a child with such great needs”, “what is your understanding of her condition”, “Are you aware that your child is going to die”, “What are your plans with DNR”. I was overwhelmed with the horrific questions, but what devastated me the most was when one doctor said the words “your daughter will live life in a vegetative state. She will never have consciousness, be aware of her surroundings, she will not know who you are, and she will never love”. My heart shattered and all I could do was cry as I thought that our child will never know who her mom and dad is, I would never know if she loved us, and that she would never be aware of how much we loved her.
When we brought Gabby home for the first time, we were terrified. Gabby was my first child. I was a brand new mom and brand new mothers are terrified, let alone one who has a medically fragile baby. She wasn’t able to regulate her temperature so she was always hypothermic. The only means of keeping her warm was through heating blankets and body heat. Her means of nutrition was through a NG feed tube and I feared aspiration and had panic attacks every time I fed her. You had the fear every morning when you awoke that she would be lifeless in her bed. I know that sounds morbid, but when you are told that your child will die within months and her death will most likely occur when she is sleeping due to her forgetting to breathe, that is a thought that is instilled in your head and you fear it.
Shortly after arriving home, Gabby had her first pediatrician appointment. Her pediatrician had been in contact with Children’s and was aware of her condition and her prognosis. I remember the first time he came into the office. He picked her up, examined her, asked me a few developmental questions that they always ask then says I can take her. As I took Gabby, he wrote notes in Gabby's file. He then sits down and asks me how I was doing. I broke down and said that I was terrified. I had no idea what I was doing. His words, I will never forget, he said “take her home and treat her like any other child”. I couldn’t believe that for once a doctor said something good. Well, that is exactly what we did. We treated Gabby like any other child, meaning we put no limitations on her.
Gabby started to excel in things. She was rolling on her side by two weeks, eating by mouth, began crying to express her needs and wants, grabbing objects, holding onto your fingers, smiling, and so much more. She was doing amazing things. The thing that amazed us the most was that she was showing love and affection. Her kisses filled us with joy and her smiles when she heard our voices brightened our days.
Gabby expressed love to those she knew the most, and that was family. Gabby, had no cortex, she was born with no brain, other than her brain stem. Gabby’s love came with no conditions. She never expected anything from anyone. She never saw the bad in people. She didn’t get mad about the mistakes I made taking care of her. Gabby’s love came with no limitations or expectations. She accomplished in her seventeen months on earth what some of us spend our lifetime trying to accomplish. She was truly an amazing child that gave us the best present, Unconditional Love.
Sunday, January 30, 2011
Don't Be Afraid
Her pictures are scattered throughout my room and within the house. Her molded hand and feet prints are next to my bed along with a baggie of her hair from the hospital. As I lay down for bed, her blankets and stuffed unicorn that I received from her hospice nurses lay next to me. I wrap my arms tightly around those things as I fall to sleep each night. This helps me to cope and makes me feel comforted.
As a parent who is new to grief, I find myself asking the questions "why wont anyone mention my daughter's name"? I don't take offense to this, because I know the answer to that question.....they are afraid. They have not forgotten my daughter, they are afraid to mention her name because of fear it may hurt me and make me cry. Don't be afraid when you see me to ask "how I am doing", don't be afraid to mention "Gabby's" name, and definitely don't be afraid to talk about her memories and say "Remember when Gabby held her own bottle".
You see, the only thing I am afraid of is people forgetting about Gabby. Gabby was an amazing child who gave so much to so many in such a short time. I want everyone who knew her to remember her and allow her legacy to live on. If her name is mentioned, I will likely cry, but not because you made me think of her. There isn't a minute of the day that goes by where I am not thinking of her. My tears will be from the pain and hurt of losing her, not because her name was mentioned. They will be tears of joy as well, it means someone has kept my daughters memory alive, and for that I will be forever grateful.
Please Don't Be Afraid.....
As a parent who is new to grief, I find myself asking the questions "why wont anyone mention my daughter's name"? I don't take offense to this, because I know the answer to that question.....they are afraid. They have not forgotten my daughter, they are afraid to mention her name because of fear it may hurt me and make me cry. Don't be afraid when you see me to ask "how I am doing", don't be afraid to mention "Gabby's" name, and definitely don't be afraid to talk about her memories and say "Remember when Gabby held her own bottle".
You see, the only thing I am afraid of is people forgetting about Gabby. Gabby was an amazing child who gave so much to so many in such a short time. I want everyone who knew her to remember her and allow her legacy to live on. If her name is mentioned, I will likely cry, but not because you made me think of her. There isn't a minute of the day that goes by where I am not thinking of her. My tears will be from the pain and hurt of losing her, not because her name was mentioned. They will be tears of joy as well, it means someone has kept my daughters memory alive, and for that I will be forever grateful.
Please Don't Be Afraid.....
Monday, January 24, 2011
"Grief" My Never Ending Ride
It has been nearly two months since I heard those words that all parents fear, the words I relive everyday, "I'm sorry, but she didn't make it" haunt my daily life. Unfortionately, these are the words I knew I would someday hear after my daughter's diagnosis of Hydranencephaly ( http://en.wikipedia.org/wiki/Hydranencephaly). Although, I knew the grim reality of this diagnosis and accepted the fact that I would most likely outlive my child, it never prepared me for the never-ending roller coaster ride I am now on.
"Grief" is the name of this roller coaster ride that I find myself on. It is a bumpy ride filled with many ups and downs and no matter how hard I try to stop this ride, it will not. I find myself climbing the hills of happiness as I remember the pleasant thoughts of our daughter and the amazing joy she brought to our life. These are the days I think to myself "Everything will be okay".
Unfortionately, with every hill you go up, you must come back down. Going down happens quickly, without warning. It is unclear when it is coming, and takes your breath away. Your stomach flips as you are overwhelmed with fear, anxiety, and sadness. These are the days I think to myself "I can't do this anymore, when will it stop".
Although, I am on one of the most scariest rides, I have faith that this ride, like all others, will become easier. I believe the fear I am feeling will soon subside and I will learn to deal with the ups and downs as they come. I realize I am on a ride that is never-ending, but with time this ride will become smoother and much easier to deal with.
For everyone, grief is different. There is no set time frame on when the pain will ease or how we will deal with it. Grief has many stages and you never know how long one stage may last. It is common to go through stages more than once. For those who are dealing with grief, be patient with yourself. Allow yourself to go through each stage and never be afraid to ask for support if needed.
"Grief" is the name of this roller coaster ride that I find myself on. It is a bumpy ride filled with many ups and downs and no matter how hard I try to stop this ride, it will not. I find myself climbing the hills of happiness as I remember the pleasant thoughts of our daughter and the amazing joy she brought to our life. These are the days I think to myself "Everything will be okay".
Unfortionately, with every hill you go up, you must come back down. Going down happens quickly, without warning. It is unclear when it is coming, and takes your breath away. Your stomach flips as you are overwhelmed with fear, anxiety, and sadness. These are the days I think to myself "I can't do this anymore, when will it stop".
Although, I am on one of the most scariest rides, I have faith that this ride, like all others, will become easier. I believe the fear I am feeling will soon subside and I will learn to deal with the ups and downs as they come. I realize I am on a ride that is never-ending, but with time this ride will become smoother and much easier to deal with.
For everyone, grief is different. There is no set time frame on when the pain will ease or how we will deal with it. Grief has many stages and you never know how long one stage may last. It is common to go through stages more than once. For those who are dealing with grief, be patient with yourself. Allow yourself to go through each stage and never be afraid to ask for support if needed.
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