Originally posted 2014-05-01 16:47:33.
Have you ever wondered why you go through certain things in your life? Why you may suffer from events, diseases, or whatever you have gone through? Yeah, me too. As I have reached my fourth decade of life I look back and take accountability of the things that have gotten me here. I look at the things both of my children have had to go through being biracial, to the illnesses, hospitalizations, etc. When my daughter was born I remember her staying in the hospital for a while. They could not figure out what the heck was wrong with her. From my son’s stays at Duke to test him out the wazoo to try to figure out why he kept getting sick.
My daughter has a form of anemia that is bipolar. There are some days she is ok then the next month they want to refer to a specialist. By the time we get ready to see the specialist …her levels are normal again. I don’t understand it. I mean at 18 years old she has already had a mini-stroke/TIA. I just don’t get it. Yes these things make us more aware of our own lives and what our lives mean to each other. My daughter said recently that we are women of heart and no matter what we have gone through somehow we still remain giving. We will help someone who has done us wrong. Why is that? Maybe you have the answer. I am not the religious type. I don’t go to church anymore. But I do believe in God. I believe in the power of prayer. So we have faith. It is just others in the church that have turned us away.
We were kicked out of a church years ago. The pastor and deacon came to my home and asked to speak to me. No problem. He asked me if my son had AIDS/HIV. I said no. He has a challenged immune system. Big difference. He was born without the ability to produce protein antibodies. In 60 years of research Duke had not seen anyone that could produce Polysaccharide antibodies but not protein antibodies. So they did not know what to tell me to do. What medical advice can be given on something they knew nothing of? So for a time he wasn’t allowed to go into the grocery store, waiting rooms, etc. We would go to the doctor’s office and when they found out who it was they would put us in a room by ourselves without waiting in the waiting rooms like everyone else. Then some of his other doctors would then worry about socialization. So they would all have discussions on what the best thing was for us to do for him. It sucked always being carted off like a disease that had to be quarantined but I know it was for his best interest.
As they grew up Dusty has had meningitis to salmonella. Meningitis was when he was younger. Around age 5 and 6 years old. It was the viral but there was a catch to it. He didn’t have a normal immune system to fight it off. After so many years of him being sick by that time he had already had 10 spinal taps (the test they do to test for meningitis). They wanted to do another…as usual I told them ok, I am out of the room. I could never watch them stick a needle in his back to draw out spinal fluid. I mean I can watch a lot of stuff and be able to stomach it but that…no. So as usual I walked out of the room and waited for them to finish. I had gotten complacent at that point since he had so many done in the past. This time…the doctor came at mean and told me a different result. It was positive. I literally passed out where I was standing. I came back to and still didn’t believe what I heard. They started to quarantine everything and everybody at that point. I can remember them closing everything off to the room he was put in. Everyone that came in there had to be fully covered.
I don’t know if it was my stubborn butt or not but I didn’t go in there covered…at all. I told them this was my child and I wasn’t going to put something between me and him even if it was for my protection and maybe his own. Thank God I didn’t contract it or give him anything else. He came through it all…little brain damage because of it but he was good to go. In 2009 he somehow got salmonella. We think it was from the pool on base. My kids went to the pool a couple of days before symptoms showed. Symptoms start showing 48-72 hours after. He went to the pool that Saturday and Sunday. We woke up Tuesday to him in the living room floor covered in his own feces and body fluids. He had a high fever and had obviously had a grand-mal seizure. He was out cold. No responses. We called 911 and they arrived soon after the call. He was still alive but didn’t know what was going on. They rushed him to the hospital on base and started working on him. They ran test after test. When they did an EEG they said that it was like he was drugged up …that out of it. But after running blood tests to see what was in his system they find nothing. Not even his seizure meds. The salmonella had caused diarrhea and that in turn depleted the seizure medications in his system. So he had so many seizures that he was just that out of it. Scared the fool out of us for sure. They needed to transfer him out to a hospital more capable of taking care of him. First it was Duke, then ended up at ECU (now Vidant Health) because of no beds available. Guess it was for the best since my husband was somehow stationed an hour away from where we lived. Then we lived an hour and a half from the hospital.
He stayed in the pediatric ICU unit for two weeks trying to level his meds out to keep him from seizing repeatedly. I don’t know how he came through all of that but he did. Fighting it all the way.
After all the three of us have been through I still wonder why ….why we are still here. What is our sole purpose here on earth? Well that question hasn’t yet been answered. At least from my perspective. I am just so blessed to still be apart of this world and to share it with the friends and family we have gained along the way.