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.         

The Mask

She hides her face when she's not alone...She wears a mask, but it's not her own


I'ts everyone else she wants to be

Be just like them Supposedly free


Free from the troubles, the troubles of life

Free from sin and worries and strife


But when night time falls and she climbs into bed

Her mask falls apart and her head fills with dread


She screams and she cries but no one can hear

She wants them to know, know all her fear


Her fear of facing a world with no mask

Afraid they won't like; afraid they won't ask


So she waits for the day with hope in her heart

When she'll wear her own face and make her new start

~Melantha Abraham

A Quick Poem For My Little One

You are so strong in so many ways, you prove it to the world every single day. I'm so proud of the courage you show and I love you more than you'll ever know. A hero to me every single day, im so grateful to you in so many ways.

Love Mommy

A Life of Unknowns

I am mom to a special need child, diagnosed with a neurological condition, with a prognosis that is quite obscure.  As a parent in general, we find ourselves asking if the decisions we're making are the right ones for our children.  We all fight with the constant struggles that are involved in the daily care we give our children.  My biggest challenge is dealing with the unknowns that are associated with such a grim prognosis.

As a child, I never imagined as an adult that I would have a child with a special need, or yet a child with a terminal diagnosis.  I imagined myself having healthy children and figured my biggest challenges would be if I was raising them to be good human beings with high moral standards.  In reality, I find myself struggling with the constant fears of nothing more than the unknowns. 

In general we all deal with unknowns.  None of us know what our future entails, I can't help but associate the unknowns with my daughters condition.  Wondering if a cough she developed is going to put her life in jeopardy,  or what new symptoms she might develop due to her condition.  Is her brain stem....her only means of survival tiring and at risk for failing.  Then, there is the biggest fear that never leaves my mind.  The fear lurks as an evil shadow watching my every move, that is the fear of my daughter not being here tomorrow. 

I find myself battling with these thoughts daily.  They are fastballs pitched to me way to often and I just want to find a way to hit them out of the ballpark so they will never come back.  Of course I find myself striking out too often.  My goal is to become the winner, I'm going to learn how to hit a so-called homer better than any ball player I know.  I know my goal is going to take a quite a bit of practice and I'm expecting to be hit by a lot of balls.  Not sure who came up with the quote "No pain, No gain" but boy do I believe it to be true.    

Another favorite quote of mine:
          "Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault

The Laughter, Tears, and Joy of a Mom of a Special Need Child

As an 18 year old, I began working with adults who had special needs.  It was a field I never imagined myself working in, but just happened to fall into to.  For those of you who care for someone with special needs, you are aware of the extreme demands that are involved with taking care of them.  I never imagined the hard work it was.  Assisting them with everything we take advantage of such as bathing, clothing, toilieting, eating, walking, talking, doctors appointments, ensuring they are healthy and take their meds.  The list goes on and on.  Shortly after I began working with Special Needs people, I knew I had found my calling and wanted to do as much as I could for them. 

In 1996, I began my college career as a Social Work student at the University of Cincinnati.  My goal was to of course work with individuals with special needs.  In 1998, I graduated with an Associates Degree in Social Science at the University of Cincinnati.  That same year, I transferred to Northern Kentucky University where I would persue my education in Social Work.  This was a very busy and stressful time for me as I worked full time taking care of individuals with special needs, interning part time at a nursing home, and keeping up with the duties of a full-time student.  I did this for three years until I finally got my bachelor's degree in Social Work. 

After graduating, I did just what my goal was and that was to further my career in the special needs field.  I became a supervisor of a small company that provided supports to individuals with Developmental Disabilities.  My duties were to ensure staffing and appropriate training for all staff to adequately and safely work with the individuals in their own home.  Not only did I know I found my calling but I adored everyone I worked with.  I especially fell in love with my clients.

People I spoke to always told me I had a special heart and that they could never take care of someone with extensive needs.  One comment I hear a lot, "I never know how to act around someone like that".  Well first of all, I don't really see people with Special Needs much different than you or I.  They may need more help than others, but hey, don't we all at times.  We all have our handicaps whether it be mentally, physically, or emotionally.  As for how to act around someone with Special Needs, I always tell people "It's easy, just be yourself because unlike a lot of people in this world, one thing they don't do is judge you"  I don't have to worry about what they are going to think if I don't have my makeup on or my hair done one day.  Your loved because of the care and the love that you show towards them. 

At the age of 32, I gave birth to my first child, a daughter named Gabrielle Jane.  The ironic thing is that three days after she was born we found out she had a rare medical condition called Hydranecephaly.  That's right, I gave birth to a daughter with special needs.  I must admit it was a very emotional time for me and my family.  I was very experienced when it came to caring for someone with extensive needs, but I never dreamed that I would one day have to care for my own child who has special needs. 

After we found out our daughter's diagnosis, our life changed so drastically.  We were told to never expect much out of our daughter, first of all because she would never make it to one and second of all....she would live the life of a vegetable.  She would have no awareness, never know who we are, never hear nor see, and no consciousness.  Although, we were told all this by the people we trusted the most (medical doctors), we wanted to take her home with us and to care for her as if she were a typical child.  We did just that.

Gabby has been given so much love by so many, many who have never even had the oppurtunity of meeting her yet.  She is stimulated daily and loves to play, laugh, and listen to mommy and daddy do silly talk.  She loves her family and is very aware of who we are and her surroundings.  We will continue to give Gabby all the love in the world and will continue to stimulate the 25% of brain matter she does have.

I must admit that being the parent of a Special Need child is not easy.  It is amazing how you can laugh from joy and cry from sadness so many times in one day.  I find myself laughing at the funny things my daughter does such as her laughing, making noises, playing with her toys, learning something new, and the numerous funny faces she makes.  Then I find myself overwhelmed with sadness that kids younger than my daughter are doing things she should be doing such as walking, talking, running, crawling, eating solid foods, potty training, sucking their thumbs, and the fact that I can't chase my daughter around because she is getting into everything.  Then I begin to be thankful for the fact that my daughter is still alive, and in the long run that is all that matters to me.  I never realized the emotional roller coaster that never seems to end.  The constant struggle with not only keeping your child healthy, but keeping yourself healthy as well.  I am so grateful to have met a wonderful group of friends who know all too well what this roller coaster ride is all about.  Although, I have wonderful family and friend support, there are just some people who seem to know exactly how you feel and the struggle everyday brings just to keep you sane.  I'm going to end with one of my favorite quotes:
      You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman