Daddy, "don't worry it will be ok."

I have come to realize that my blogs are so deeply emotional to me and more physically and emotionally draining that I thought they would be.  But I believe in what I am doing and hope it will help so many others.

This blog is dedicated to my daughter who I love more than anything in the world. 

The life changing moment in my life was when my daughter was born in 1992.  It was no accident that she has the same name as my best friend Natalie.  If I had my way my friend, Natalie, would have been the god mother but due to the hard rules of the Catholic Church it was not permitted.  I was kicking and screaming because Natalie was my first, second and third choice of god mothers but I had to concede on this issue because of church rules.

With the birth of my daughter my life took a turn for the positive and gave me a sense of direction and purpose that I had never had in my life.  I love my daughter more than anything in the world like any parent.  But to hold a child that you know is part of you is beyond words until you are actually in that moment.  I felt so lucky and fortunate to have shared in the birth of my one and only daughter. 

Doing this time SIDS (sudden Infant Death Syndrome) was in the news often enough that I will go in to my daughter’s room in the middle of the night to make sure she was ok.  I also gave her bottle in the middle of the night and make sure she was good through out the night.  When I would go to town she would come with me.  I loved my BaBa and she loved going by bys with her daddy.

But, as my mother would say, god forbid I try to sneak in the bathroom in the morning so I could go to bathroom and go back to bed.  I never would get back to bed because my daughter would hear me going to bathroom and say, “dada , dada…” I would try to ignore hoping she would go back to sleep but the Dada would get louder and louder.  So each morning I would go into her room and get her bed.  I might have been just a bit over protective but she was my pride and the joy of my life. 

But, by 1997 the relationship with my former wife had reached a point of no return.  I had developed severe rheumatoid Arthritis where I was unable to get around without the use of  crutches.  I was, in my mind, fighting for my very life and by December 1997 the relationship with my former wife had ended.   So, our family now consisted of me and little Natalie who was 5 years old.   Now I was going to have to fight for myself and Natalie whose love would help me fight the fight of my life against this horrible disease.

Doing this period of time I was on drug that was in its’ experimental trials called Enbrel.  I literally was a test subject for this new class of drugs that were supposedly able to reverse the effects of rheumatoid Arthritis.  I was fighting the depression that comes with this disease, a divorce and raising my daughter with the shear will to never quit but it was getting the best of me.  You have to understand that RA (rheumatoid arthritis ) has a cycle that I would break down like this 1. Inflammation of the joints 2. followed by fatigue 3. this is followed by sleep deprivation . 

The RA has reached the sleep deprivation stage with me and beyond and I did not know if I was coming or going.  Yes, there were days I would cry because the pain and depression was that bad.  Plus, my body would not respond to the enbrel for nine more months. So, how did I hang on for nearly a year and fight the depression and extreme pain of RA?( how bad was my RA ? according to my doctor out of 10 , 9 were better than me.)

I hung on and fought the RA and depression that comes with it because of my five year old daughter needed a daddy.  I could not look in her face and say “I quit.”  Also on a few occasions I could not hold back the tears because of the extreme pain of my RA and my daughter would see me crying.  She said, “daddy don’t worry it will be ok.”  She then would give me her favorite stuffed animal and say he will make you better daddy.   I am sure I cried more after she handed me her stuffed animal.  I knew by now I was fighting RA not just for me but my daughter Natalie.  (talking about a sense of purpose does it get any more important?)

I am sure at some subconscious level this gave me the drive to keep going and never quit because RA is one of the most crippling diseases known to mankind.  I also, looking back, feel guilty that in my eyes that her childhood ended to some extent because she had to take care of me to a point.  So, my daughter was experiencing the trauma of a divorce and her daddy was fighting RA.  I knew I had to fight RA and find a way to be there for my daughter.   There was no way I was going to orphan my daughter due to this disease; this simply was not going to happen.

Over the next two years with the help of Enbrel injections, my daughter, doctor and physical therapy some times 3 days a week I was able to reduce the RA inflammation.  It was caught early enough and with the right drug that my bones show no signs of Ra to this day.  But, the will to fight this disease I tribute to the love of  my five year old daughter who gave me so much strength at such a critical time in both of our lives. 

Doing this time in my life, my gender was for another day, I wanted to have the strength to take my daughter to school, preparing meals, getting to the bathroom, the very basics we all take for granted in our lives and I just wanted to survive this fight with RA.  My primary and secondary concern was my daughter and finding a way to be there for her every day.

 To survive this was a win in anyone’s book because I know what RA can be at its’ worst and I thought I was not going to make it and my daughter would be without her father.  I could not allow this to happen and found a way to fight because of the love of my daughter.  She is/was the most important thing in my life and I was not going to let myself or her down. 

I had plenty of help from my family but my grandmother in particular.  Natalie and I partially lived at my grandmother’s house and my grandmother made sure Natalie knew she was important to her and everyone.  My grandmother knew first hand about RA because she had it most of her life.  She would say, “Donnie, wait till it get’s in your big toe.” She made me us both laugh and helped us both through this hard time in our lives.  I will speak about my grandmother in a blog but let me say for now that she was very important to Natalie and helped her through the divorce and the time I needed to heal with my RA.  I think the family, as whole, gets their toughness and stubbornness from my grandmother but that is for another day.   My grandmother was a rock for both Natalie and myself until she passed.

I am sure reading through this blog that you probably did not think once of transsexual or transgendered woman because I can tell you without a doubt that I did not even think of it until my RA healed.  I was lucky enough to have the medicine, the will via the love of my daughter, and my will to be there for my daughter to survive this stage of my life.  I was one of lucky ones in the fight with RA.

My daughter means the world to me and, like other parents, I hated to see her see me like this and have to take care of me for the first year of this disease.  

As I told Natalie in the past, “ if I had another daughter I would want it to be you.”  I meant that from the bottom of my heart and still do.  Thank you for being my daughter and loving me.

Love

Daddy