You were the last born of 5; little did I know that you would be the first go. You were a beautiful baby. (But then all Moms’ say that) You had a full head of beautiful black hair. My other children were born with no hair. YOU WERE THE BABY!!!
You will always be "THE BABY." Right after you were born, there were things that weren't quite right; but the Doctors explained them away. I am referring to signs of a bleeding disorder. Your first year of life was uneventful. You were a good baby, never cried, always happy & were a joy to the family.
One morning, I went into your room to get you up & was shocked. You were standing in your crib (approx. 1 yr. old) & were finger painting. But it was not paint. It was blood. I totally freaked out, as there was so much blood & I didn't know where it was coming from. I cleaned you up & then realized that you had a nosebleed. NO BIG DEAL!!! As I am a nurse & knew I could stop the bleeding. Well, I could not. So off to the MD we went. He packed your nose & gave you Benadryl, which made you sleepy. The Doc. said that it is rare for a child to bleed from the back of the nose, so he felt that what He did would stop the bleeding.
I brought you home, & you fell asleep of the living room floor. 5 hours passed, you woke up & tried to crawl & then collapsed on the floor. I picked you up, at which point you began to vomit "BUCKETS" of "coffee ground material. (That is old blood) Contrary to what the MD said; you were bleeding from the back of your nose & it was going into your stomach. I immediately called the MD, who said, "Bring him in” When we got to the MD office, He immed. called an ambulance & you were sent to the Hosp.
Upon arrival at the hosp. you were in circ. collapse. You were unresponsive & they could not get a vein for IV fluids. Had to do a cut down. For non-medical folks, that is making an incision into the skin & finding a vein to start an IV. Once that was done, they transferred you to Children's Hosp. Washington, DC. You were in a coma in ICU (drug induced) numerous tests were run. They could not determine why you had bled & began to point a finger at me. They told me that child of that age do not bleed for no reason & suspected that I had abused you. At one point, I told them to lock me up; BUT if children do not bleed like that for no reason; that they had better find out the reason as I HAD DONE NOTHING TO MY CHILD!!!
Finally, one Hematologist at the Hosp. believed me. He ran numerous tests & discovered that you had Von-Willabrands Dis. Type 2, which is VERY rare. Any bleed (was usually the nose) needed to be treated with Cryoprecipitate IV (A blood factor-that you were missing. You recovered & I brought you home, THANKING GOD for sparing you. The next 14 yrs. of your life, we dealt with this Disease. You awoke me many times in the night (too many to count) & I would here "Mom, My nose is bleeding." Oh, how I would love to hear those words again!!! Anyway, off to the Hosp. we would go. After receiving the blood factor that you were missing, the bleeding would stop. But any ER visit would be at least 4 hours, as the factor was frozen & had to be thawed out before you could get it. Hospitals for you & I became a part of life.
Then came your 2nd. knock on deaths door. Normally 12 units of blood factor would stop the bleeding. NOT THIS TIME!!! You had such a severe bleed that would not stop. You had already gotten 120 Units of factor & were still bleeding. So, this time a trip to Surgery, to stop the bleeding. You pulled though & again we came home.
There is a camp in Fla. for kids with Chronic, life-threatening Diseases. Each week they have for kids with cancer, Aids, diabetes, bleeding disorders etc. It is THE BOGGY CREEK GANG CAMP. Funded & started by Paul N------- & Arnold S--------------- You went for a week 3 summers. & had a ball!!! There is NO charge for this camp. GOD BLESS THE ONES THAT FUNDED IT!!!! I also got a letter from MAKE A WISH FOUNDATION. For kids with chronic, life threatening Diseases. I never got any thing for you, as I did not feel what you had was life threatening. After all, any bleeding could be stopped with a trip to the Hosp. Not like you had cancer etc that could not be treated. Little did I know????
May 4, 1999
A friend of yours knocked on the door & before I knew it, you were out the door. In the past, there was never a day when you children left the house that I did not say "Have a good day- I LOVE YOU!!!" This day, you left so fast that I did not have a chance to say those words. You left at 1:50 pm & at 2:20 pm, I got a call from the PD Dept, that you had been in an accident & to get to the hosp. I did not even know what accident??? What had happened to you???? I sped (Past the speed limit) to get to the Hosp. They had not even brought you in yet. I paced the floor, praying for you, not knowing what had happened or what condition you were in.
Finally, the ambulance pulled in. I DEMANDED TO SEE YOU. They would not let me back into the ER room. I was frantic. I was hysterical!!!! I WANTED TO SEE & BE NEAR YOU. For 14yrs, I was always there for you; now they are telling me that I cannot go back to be by your side. Finally I was told that you were in an ATV accident. When you went out the door this day; you went for a ride. The kid driving the bike tried to jump a driveway & the bike nosed forward & you were thrown 20 Ft. into the air, landing on your head.
At the accident scene you were in shock; as you knew the name of your bleeding disorder & the treatment for it, BUT never told the paramedics. The first person at the scene said that you told her "Tell my Mom that I will be OK & tell my family that I love them." I think then you knew how serious it was & that you were not going to make it. But, due to the shock, you were unable to tell the paramedics that you had a bleeding disorder. You knew what disease you had & what the treatment was better than you knew your name (As I drilled it into you- from an early age) But, being in shock, as you were bleeding into the brain. You were unable to tell the paramedics what you had.
As I walked out the door (after the call from the PD) there was the Med. Helicopter going over my head. They put Shane in the helicopter, as he was unconscious & put you in the ambulance, as you were "awake." On route to the Hosp. you started having seizures & then lapsed into a coma. As you were bleeding into the brain.
At the accident scene, your nose was pouring blood. Anyway, once in the hosp. they immediately took you into surgery to control the bleeding in the brain. I prayed, had hope that you would pull though, after all you had done it many times before. But, this was your 3rd. strike (3 strikes-your out & so you were.) I prayed & had hope for 2 days after your surgery. I knew they had you sedated, I knew that you would pull though; as I could not bury 1 of my children, a gift from GOD, Yes. BUT PLEASE don't take him back so soon, I prayed. After the 3rd day I was told that your eyes were 4 cm. & fixed. (In other words- no brain activity) The nurse in me knew that you were not going to make it.
The Mom in me prayed for a miracle. Knowing that you were not going to survive on the 3rd day; I had to be upbeat for your siblings: Danny, Donna & Dennis. I endured 2 weeks of HELL. Finally the decision was made to take you off life support, as you had no brain activity. Two weeks to the day of the accident, I gave permission to remove your life support. You were taken off at 7pm & passed into Heaven at 1:50 am. I was not there when you took your final breath. The Hosp. called me at 1am & told me that your temp. was up to 105 & I knew that we were loosing you. I feel guilty, my son, for not being there. I had always been there for you for 14 yrs. BUT, I could not bear seeing you pass on.
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