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. 

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.....   

"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.        

Dear Gabby

Dear Gabby,

Today I sit and look at your pictures, but that is nothing new, I look at your pictures daily.  As I look at your pictures, I try to think of your beautiful soft skin and what it felt like to touch you.    You had the smoothest, most flawless skin in the world.  I am so scared that I am going to forget what you felt like.  It's been over a month now since I last held you and my arms are so empty without you. 

I go to the cemetery almost daily and feel such comfort in our visits.  Your headstone should be coming in soon.  At times I can't wait for your headstone to come in, but then I dread it because it makes your death so final.  I don't know if I'm ready for your death to be final.  At times, I dream that you come back to life and the doctors just say "Gabby's back" and go about their business.  Then I wake up and realize it was just a dream and that you are never coming back.

Since you been gone, I have tried getting back into the swing of things.  Going back to work and just learning how to go about living half alive.  That's how I live, half alive, because when you left, a peice of me died along with you.  My heart shattered into a million peices when you died and I am not sure if my heart will ever be in one peice again.  I have faith that time does ease pain, but I know that I will always ache for you. 

I often think of the conversation we had weeks prior to your death.  It was the conversation in which I told you that if you ever got too tired or were in too much pain, that mommy would understand if you needed to move on.  I get so angry at myself for giving you permission to leave me, but your life was full of suffering.  Doctors wanted you on valium six times a day and versed as needed.  We watched as you had more "storms" and just saw the misery in your eyes.  You were so tired and just wore out.  I wanted you to know that you had permission to move on if needed.  I just didn't think you would go so soon.  I thought you would do your magic and that you would pop out of it and be fine like you did so many times before.  We always said "Gabby never does anything she don't want to"  so I know you were ready to move on and I just need to accept that.  Mommy is just being selfish because she don't have you anymore.  I need to learn to be happy for you because you are at peace now and are no longer suffering. 

Mommy will be strong for you and will get through this.  It is going to be difficult, but I know that I can do it.  I never make promises, but I am going to make a promise to you and that promise is that I will get through this.  I have four words for you Gabby and that is "Blink Of An Eye", in other words, someday I believe that I will see you and hold you again and when that time comes, however long it may be, it will be in "Blink Of An Eye".   

Love Always,
Mommy 

   

Happy Thoughts and Wonderful Memories

After you lose a child, your world is filled with grief.  For quite sometime after the loss of your child you have a hard time remembering the joys in their life.  I guess its your minds way of playing tricks on you.  You play over and over in your head the horrible memories of the events that led up to their passing and only the memories in  their life that weren't so pleasant.  I guess that is why they call it "Grief".  I know my daughter's passing is quite recent and up until recently I thought I would never remember the good memories we have of our Gabby.

With each day, I am starting to remember a little bit more of the good days and wonderful memories that she left.  I am going to use this post as a journal of those wonderful memories so when I have my bad days I can come back and read this post.  This post will help me place those wonderful memories that seem to be lost, back in my head.

Of course, one of the best memories I have of Gabby is the day she was born, June 24, 2009.  At that time we were not aware of her diagnosis.  The fondest memory is when the doctor placed her in my arms and I held her for the very first time.  I couldn't believe I was holding this beautiful baby girl and that something that beautiful was a part of me.  I never realized you could love someone so much that you just met.  Of course I loved her the whole time she was growing inside me, but when you hold that baby for the first time, the love you feel is unbelievable.

Another vivid memory that is coming back is the first time she was released from the hospital.  She was transferred to Cincinnati Children's  Hospital two days after she was born and on the third day is when we found out her diagnosis.  She was around nine days old when we were first able to take her home to live with us.  I remember placing her in her car seat and the nurse checking to ensure I had her in their properly.  I remember the ride home as I kept looking back to check on her.  She had her "red puppy wubbanub" in her mouth that she loved so much.  I remember bringing her into the house and showing her the bassinet that we had for her in our room.  She looked so tiny in her bassinet.

At thirteen days old, I remember going to check on Gabby and I was quite shocked when I noticed that she had rolled over onto her side.  I had to call everyone and let them know what my baby had just done.  I was so proud of her.  Gabby loved to roll on her side when she was tiny and loved to sleep in an "s" shape.  I would always reposition her because it always looked so uncomfortable, but Gabby would always go back to that "s" position she loved so much.

There were several funny moments in Gabby's life.  One memory that I still laugh about was when she was just two weeks old.  I was downstairs updating her Caring Bridge website and Gabby was upstairs with her Grandma and Grandpa.  Grandma was feeding Gabby and went to burp her.  Gabby burped so loud that I heard her downstairs and before I knew what it was, my heart stopped.  I thought she had choked but then after hearing Grandma and Grandpa laugh I realized it was a burp.  Gabby could put any man to shame when it came to burping.  That girl could burp and many times her burps were so loud that they startled her and you couldn't help but laugh.

Then of course there was that smile.  She smiled often and even slept with a smile on her face.  She loved her big girl beds (crib) and when you would lay her in them, her smile would just take over her face.  Her smiles would always make me smile.

Around 5 months old, Gabby began to stand with assistance.  She loved to stand and would always stand on your lap.  It wasn't long after Gabby was able to stand that she began walking up my chest.  She would do it so perfectly.  She would take one step in front of the other and would go until she couldn't go any further.  If you held her on the ground she would take one step in front of the other and would walk on the ground.

Also, she made the funniest faces.  She would always make this face where she would put her lip to the side and wrinkle up her face.  We use to call her Elmer Fudd because she looked just like him with that bald head and that wrinkled up face Elmer Fudd always had.  I believe they were twins separated at birth.  

I remember her first cry like it was yesterday.  She was nearly a month old and it was at night.  Daddy and I were laying in bed watching television and she just began to cry.  I panic because I have never heard this girl cry before and had no idea what to to do.  So of course I did what came naturally and picked her up and fed her.  This of course stopped the crying.  After that, Gabby continued to cry, but only if she was in pain or hungry.  Oh, she would cry as well if you got her out of bed and she wanted to sleep.

Not only did Gabby smile, but she laughed as well.  That girl had a giggle that was just too adorable.  She didn't giggle often but what made her giggle the most is hearing other babies cry.  Not sure what she found so fascinating about other babies crying, but she thought it was funny.  Sometimes I wonder what went through that girls head to make her do some of the things she did.

How can I forget the fondest memories of all.  Those are the memories of how much she loved her daddy.  She was definitely a daddy's girl and loved being around him.  One of her favorite things to do with daddy was "patty cake".  Daddy would do patty cake with her, and Gabby's mouth would open so wide and she would squeal with excitement every time he did it.  She loved laying on her daddy's chest and would rub his facial hair continuously.

I can't believe that during this time of grief I was able to remember many of these things.  I know there are plenty of other excellent memories that will come back to me in time.  Right now I continue to grieve from our loss.  You never know one minute from the next on how you are going to be.  It is all so new to me, but I know that in time these excellent memories will come back to me and they will be memories that I will cherish forever.    

Since You Been Gone

Since you been gone, life has not been the same. 

Since you been gone, I cry now for my loss and not from the fear of losing you. 

Since you been gone, I no longer wonder if this is going to be my last time holding you, my only wonder now is when I will hold you again. 

Since you been gone, my heart aches for my pain, and no longer for the days you were in pain. 

Since you been gone, I no longer have anxiety over how I would lose you, but now have anxiety from how I lost you. 

Since you been gone, I know longer worry about everyday of your life, but now I worry about living without you everyday of my life.

There is only one thing that has stayed the same, since you been gone....that is my love for you will always go on <3   

A Life of Unknowns, Becomes My Reality

As a mother, it is typical to worry about your child. When you are a mother to a special need child, especially one that has a grim prognosis, you find yourself always thinking the worst.  I found myself from the day I learned of Gabby's diagnosis that I worried 24/7.  The worrying became quite obsessive and even caused great anxiety and emotional problems for me.  Most of these worries were instilled by my own thoughts, but they were amplified by the medical world. I remember as if it were yesterday, doctors telling me that we would be lucky if Gabby made it a few months and even luckier if she made it a year.  At her first appointment with her specialist, I was told that if Gabby caught even the slightest cold, it would kill her.  How am I supposed to act to a comment like that?  My immediate reaction was breaking down in tears and swearing that I was going to do everything in my power to ensure Gabby's health.

I became quite obsessive when it came to Gabby's health.  Hand sanitizer was kept in every room, only soap purchased was antibacterial, lysol wipes in large quantities, face masks always available, limited access of visitors and when they did visit I supervised them as they washed their hands to ensure they did it properly.  Oh, and I can't forget the trips to the grocery store where I sanitized every portion of the cart and then washed my hands afterwards to the point where they were raw.  At night, I had to coat my hands in vaseline because they were so raw and cracked from the 100 handwashes a day.  When I arrived home from work, I would strip my clothes, shower and put on new clothes prior to handling Gabby.  Lets just say that I was a little beyond obsessive.  I remember being told by family that I was out of control and that I was being too overprotective.  Ok, maybe that was true, but my only child had a severe disability and I wasn't taking a chance on her life. 

During Gabby's life, I dealt with many emotional problems and a lot of anxiety.  Hiding these emotional issues and anxiety was always a tough thing to accomplish.  Every minute of every day I thought the worst.  If I got a phone call from my mom while at work (she watched Gabby) I would immediately think the worst.  If Gabby got a slight cold I would panic and think she was dying.  I can go on and on about these horrible thoughts.  They haunted me every waking minute of everyday and haunted me while I slept as well.  Everyday I worried as if it was going to be my daughter's last. 

On November 26, 2010 my worst fear came true.  That was the night we lost Gabby, our precious daughter.  I will not go into details as they are too horrible to relive.  All I will say is that our daughter gave us great joy for 17 months and 2 days.  I don't regret one minute of her life and I wouldn't change a minute of it.  It is so funny how your mind continues to play tricks on you.  Even though I know she is at peace you still worry about your deceased child.  The grieving is all so new to me at this time and I am still trying to find ways to cope.  I am going to continue Gabby's blog in her honor.  She blessed me with so much and I am so grateful to say that I am Mom to Gabrielle Jane Bauer, a gifted child that accomplished so much in her short life.