My son was born and seemed to be very healthy but that wasn't true. He was actually bleeding to death inside. We had the usual visitors after his birth because everyone thought he was healthy. The next morning I was told he might be dying. The most awkward call I had to make was to my husband and family to tell them that. They had left the night before what seemed to be a perfectly healthy baby. My Mother had noticed his feet were purple and was worried but the nurse said he was just cold. I had made calls and we were put on many prayer chains.
I was glad when my husband and mother-in-law arrived shortly after. My cousin, Laura also came. We were told that if he survived they would transfer him out to a NICU or Neonatal Intensive Care Unit. His chances of survival were estimated at less than 20%. The unit could be there in 45 minutes and if he was stable enough he could go. When they got there I could see the nursery window and all the activity. Someone noticed that and shut the curtain.
After what seemed like an eternity we were off. Arriving at the hospital was kind of wild at first. We were soon in a room and a little more settled. I had pre-toxemia but my husband had told the doctors that I would be going with the baby. So I got some medicine and stayed in a room close to my baby and later in his room.
I didn't want to leave the hospital and I didn't unless someone came and took me away to dinner or somewhere. The nurses would come and wake me late at night to calm him because he responded so well to my voice. He was on a ventilator and couldn't be picked up. I was amazed that my voice calmed him but it is amazing the bond between Mother and child.
We were told so many different things that it was total confusion. Many tests were done and nobody really knew what was wrong although there were plenty of guesses. So much extra stress was brought on by being told things that were very wrong. We were told things like developmentally he might not be okay, he could be blind and the list goes on and on. I am very blessed and happy to tell you that he is above average IQ and developmentally he is fine.
On the sixth day of our hospital stay we were told that he had Severe Hemophilia A. He actually had a ruptured liver due to the trauma of birth. I was almost relieved to hear this diagnosis. Although my Daddy never talked about it, he had hemophilia too. I also had a cousin with it. My Dad had passed 3 years earlier and I realized I knew so very little about hemophilia. The hospital didn't know much either. Internet wasn't available then as easily as now. I did have a cousin who's son had hemophilia. I talked with them and got a little relief from some worries. Not for long though because soon the realization hit me that I had passed this genetic disorder to my child. Soon the guilt hit and I was a mess.
For those of you who haven't heard of hemophilia this is a summary. It is a genetic condition that leads to abnormal blood clotting. Many people with hemophilia develop spontaneous bleeds into there joints,muscles and soft tissues. A person with hemophilia will either have mild moderate or severe. I will give you an idea of what my son's life is like as a person with severe hemophilia a. He has an infusion of factor every other day or any time he has trauma. This means that he has a shot in a vein every time!!! If he is having an active bleed he would have an infusion every 12 hours but would probably have an IV started. Either myself or his nurse do this and at some point he will. He does occasionally stick himself. He has had bleeds that put him in a wheelchair or crutches or immobile for long periods of time. He has suffered a lot in his short life, but he is quite brave. I admire his compassion for others who are sick. He will be the first one to open a door for someone struggling in a wheelchair or on crutches. Thankfully, he has had wonderful care. Something my Daddy never had the privilege of.
My Daddy was a good honest man. He loved to tinker with old cars and trucks and was always in the yard under the hood or underneath one. Many times my Stepmother would tell him he was going to have to clean up the yard of cars and trucks. That was never going to happen. When I think of my Daddy I think of the song by Randy Travis, " I Thought He Walked on Water" or the Reba McIntire song "The Greatest Man I Never Knew." My brother who is six years older and I had a very good childhood with my Dad. He took us every weekend to car races, horse sales or horse shows.We also played Rook on weekends for hours with him and my Stepmother. He loved playing tricks on people and kidding around. My Aunt once wanted to go to the store and all that was available was his big ole' gravel truck. He told her to take it, that my Mom drove it all the time.When she got back he was just doubled over in laughter and to her surprise my Mom had never driven that truck. He got such a big kick out of things like that. He once had a "Zero" candy bar and said that was what he made in school. Could have very well been a joke or a sad truth. In his childhood having hemophilia meant that he had to miss way too many days of school. He was just a fun person. My Daddy wasn't a big church going man. As he got older he went to church some.
My Daddy like my son had Hemophilia but he very rarely talked about it. I think that he had not been taught alot about it and that he felt that he was different because not many people had this problem. My Mom said he would try any home remedy that someone told him about. Such as having a knee bleed and wrapping your leg in vinegar soaked brown paper bags. This breaks my heart to think my Daddy went through so much pain because he lived in a time when medicine to stop bleeding wasn't available to him. It also could have been that he didn't know about it. He did get very worried when I was pregnant with my children because he knew I was a carrier and had always had bleeding problems.
When I was about 32 my Daddy became sick and was in the hospital. It was like he was perfectly fine one day and completely bedridden the next. Apparently he had dropped a transmission on himself while working on an old truck. He denied this to me but at times he was incoherent. Whatever had happened he didn't tell anyone he was sick until he was almost comatose. He also had received tainted blood products that caused him to be infected with deadly viruses. This was common to hemophiliacs in the 1980's. He was sick for quite a while and once while he was in the hospital he was trying to say something. My Stepmother could understand him better than others because his voice had become very weak. He was saying he wanted to be saved. I was a Christian but I was not where I needed to be in my walk with God at the time. Panic hit me and I couldn't move. I knew that I should ask everyone to leave the room and pray with him....but I didn't. I had failed my Daddy. I am ashamed of this more than anything but I didn't step up and do anything. After that I was in a turmoil and full of shame. Thankfully two wonderful men from the church I grew up in took care of that for me and prayed with my Daddy and he was saved.
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So I guess God gives us all a second chance.......even me. A while back me and my son were home alone and he started questioning me about Armageddon and being saved. I got that horrible panic again but I knew
that I couldn't fail my own son. My son to me has always been a reminder to me of my Daddy because of them both having hemophilia. He also has my Daddy's beautiful blue eyes. I could have called my church and had someone to come pray with him but what a blessing I would miss. I gave him something called the ABC's of Salvation to read and made sure he understood it. It is in a magazine my church gives every Sunday called "Pentecostal Evangel" and the ABC's are always included. We talked about this scripture and prayed about it and he accepted Christ. I had the pleasure of sharing this experience with my son. Later my son was baptized in our church. I hope my Daddy was smiling down on us.
I now carry a copy of the ABC's of Salvation in my wallet ........just in case!!!
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