Two small beads as eyes and a warm loving smile, so we will always remember Bryce. He was born on 29 september 1994, 14 days after the date counted cross stitch. However, this was not the first signal that his small life there else went looking. On 5 months pregnancy I had to genecoloog, this second change established that the date would be 14 days later counted cross stitch for the sake of the measurements of his head. This was no longer grown since the previous measurement. First there was panic, finally he said that the first genecologe had to have made an erroneous calculation. I had to rest, first in the hospital, then at home. Two months later, there was still concern for the sake of growth. I myself was less than 3 kg. It would be a small child. I got problem with my kidneys, another recording. Drink plenty of water and back home in bed. I have this time well spent to the birth announcements and christening hive with favors. Around the 15th september I got my first labor. But no opening. The contractions came and went. To the 25th, for 4 days I had contractions every 5 minutes, but still no opening. The delivery went very smoothly, and of course we looked eagerly forward to our child. For the sake of growth delays, we had agreed that they would take blood from the umbilical cord. I had my child not yet can admire when she ran with him to the control room. Exhausted, I asked: "what is it?" "Nothing, we're going to take blood." replied the nurse. Once again asked, "Yes, but, what is it? A boy or a girl? " She smiled and said: "a son" when I fell unconscious. I had koukoorts of exhaustion and was awake in the room an hour later. My mother was in the meantime arrived and told that Bryce was okay, but under the lamp had to lie. Apparently it was the placenta fully on and he also had extra energy.

They would go get him and brought my little miracle to in my arms. He weighed 2, 750 kg and was only 32 cm. A peaceful small miracle. The first days slept uninterrupted, he never did his eyes open Bryce. His legs were stiff, causing a pamper exchange a whole job was. I wanted to breastfeed, but he was not strong enough to suck, so I gave the flask I breast milk in a bottle with a large pacifier. My concerns were swept by the Court; ' he has long in foutushouding located, he still needs recharge, some have a slow start, etc. ' There were 7 babies born in our area, I saw them grow and flourish. Bryce was a blissful baby, he never cried, smiled at any time that he was awake and cuddled against me firmly. Power supply remained a problem, so I stayed on the cob. I was more convinced than ever that he could extract more power from breast milk than from synthetic. I have this sustained until he just past the 6 months. Then I had, probably from the stress, no more production. We had a lot of the last 3 months. First the development lag, then I saw a grey Flake in the pupil of his eye. He was urgently operated on because of congenital cataract. The doctors could not say how much he was going to see. But I was relieved that they could help Bryce. My husband and I processed the early diagnosis completely different. He had the spots hit and had to process, yet denies while I put 1 and 1 together and tegen it hit me. Bryce was succeeded because cataract could be a symptom, but they assumed that it stood alone.

Bryce had surgery on both eyes. He reacted violently to the anesthesia and slept for 3 days. Even to eat we don't get woke up. There was a infusion is constructed. After a week he was allowed to return home.

Two weeks observation and several studies did not yield any results.

Finally, we were told that Bryce had a syndrome. The only syndrome that I knew was Down syndrome. That it was not, they could not say that now, there were many and even more that they didn't know. In 1994 were computer is still somewhat new, not everyone had access to the internet, medical information often went through books, documents and meetings. The only thing that the doctors could say was that a syndrome does not heal was, we had to take it as it came. The weeks went by and were months. Bryce was almost a year, he was a cheerful baby, similar to a baby of 3 months. He had chubby cheeks and his small beads eyelets with that eternal warm smile put on everyone's face a laugh. He was never sick, he never cried and kirde cheerful sounds. For the sake of the cataract, he wore lenses, it was a torture to those things in his deep small eyes. A frustration that I couldn't explain why it was necessary.

A nurse at child protective services told me that there is a special doctor came once a month to Saint Oda, a specialized institution for persons with disabilities, to diagnose on rare diseases. We made an appointment. And came in a small room with 10 doctors from different countries. They asked all kinds of questions. ' How he reacts on the Sun? Is he ever burned? ' That was the decisive question. Bryce burnt even in the car, we hung towels on the window to protect him. "Then I think I know what he has, but I doubt between 2 and would like to do a biopsy to be sure." Said the specialist. The biopsy was done on his arm under local anesthesia in the hospital, two months later we were allowed to come back for the result.

Cockayne Syndrome was the verdict. "But I have never taken drugs, I quit smoking, eat healthy, etc. When I want to be pregnant. " I said stunned. "That has nothing to do with it, we know there is still little of it. Doctor Albert Cockayne has the symptoms of this hereditary disease. These children may be 40 years, but we can only treat the symptoms locally and give any guarantees. " The specialist responded. Each month if we went on control, he expected symptoms listed on. There seemed to be no end to the list. It was a hammer blow right into my face. The beat came hard. I tried to see Bryce as the cheerful child that he was, not as the disease he had. I was convinced that the doctors could be surprised. Bryce his sophomore year went without complications. He could spend hours with his solar mirror turn and so everyone in the eye. He kirde with recognizable sounds in certain individuals through which I could hear or grandfather, grandmother or dad came in. And Grandpa was his fat friend, he lived past us and came to visit several times a day. Especially for our little man. They had the greatest fun. Bryce sat mostly on my hip while washing the dishes or vacuuming, or he sat on the vacuum cleaner. Bryce enjoyed sounds and light. And he enjoyed attention of course. In order to bypass the Sun we went hiking and in the evening he went on warm summer nights at café.

He enjoyed the people around him, and moved their lives by his cheerfulness, love and positivity. While we enjoyed outside on the terrace by the outdoor air and Bryce was asleep in the stroller, we could equally man are without worry. I wanted a second child, I wish there are actually 6, but that we were discouraged. We have come to inquire around sperm donation, but that my early man not wanted. We are going to look for egg donation, but that was too complex. Finally, adoption and foster family by the dad also disapproved. During a control moment brought the specialist to top that one in Netherlands at the laboratory of professor Huy makers developed a technology was to CS in pregnancy. But there was no guarantee, since it was a theoretical framework. On the way home I said to the Dad: "Stop but for a pregnancy test, I think I already am pregnant." And, Yes. The test was positive. I called on professor Freyns. Who laughed and said: "I had a suspicion that you try himself went." We agreed that they were allowed to do the test, but I not interrupted pregnancy, what the result was. Rowan was born in March 1997. Professor Freyns and Saha came to see if the results of the research. They too could see that unlike Bryce, Rowan had an average height and weight, he drank of the breast, he was very agile and he cried like he was hungry.

He enjoyed the people around him, and moved their lives by his cheerfulness, love and positivity. While we enjoyed outside on the terrace by the outdoor air and Bryce was asleep in the stroller, we could equally man are without worry. I wanted a second child, I wish there are actually 6, but that we were discouraged. We have come to inquire around sperm donation, but that my early man not wanted. We are going to look for egg donation, but that was too complex. Finally, adoption and foster family by the dad also disapproved. During a control moment brought the specialist to top that one in Netherlands at the laboratory of professor Huy makers developed a technology was to CS in pregnancy. But there was no guarantee, since it was a theoretical framework. On the way home I said to the Dad: "Stop but for a pregnancy test, I think I already am pregnant." And, Yes. The test was positive. I called on professor Freyns. Who laughed and said: "I had a suspicion that you try himself went." We agreed that they were allowed to do the test, but I not interrupted pregnancy, what the result was. Rowan was born in March 1997. Professor Freyns and Saha came to see if the results of the research. They too could see that unlike Bryce, Rowan had an average height and weight, he drank of the breast, he was very agile and he cried like he was hungry.

As a mother, it feels that I've done in the Rowan deficit periods that Bryce was very sick. I still do not know how I could have done otherwise. I also regret certain decisions I have taken. As no falling out with Grandma and Grandpa because they still between 11 am and 15 hours with Bryce sat down outside, because they do not understand it in the shade he could burn it. And I also didn't know that UV are cells left off, leaving him weaker. I have to learn to live with it by myself no reproach to talking. I know I've taken any decision to do good, with all the information I had at that time. And if it turned out that this were not so, then the only thing I can do, my actions to adapt to the information that I've won and do what I the best solution or method. So why make yourself crazy with ' what if ' and ' if only I had '?
At this time I realized that Bryce had started at the end. We had more than 3 very good, warm, loving years. Danny could not face the facts. He took away, both physically and by drowning them in alcohol. Bryce was an average of 8 kg to 6, 5 kg in 1 week time. The canker sores are resistance had heavily damaged. As a result, the physical decline. Bryce attactie are getting worse, his skin was parchment, hairs fell bit per bit. He had no energy to push forward more to himself in his car.

Nor to sit, chirping, etc. Beginning 1998 we decided tube feeding to boot. Only in hospitals and institutions one could rely on a pump for feeding tube, so we brought the power supply with an intravenous injection. This revealed that Bryce had a very small stomach, making the power supply top came. Also he got inflammation because the intravenous putting the probe caused his esophagus openkraste and inflammation. We were forced to withdraw to tube feeding Bryce resident with the pump to boot. I was there from morning till night. I wish my child is not for you. I wasn't ready to let go of him. I felt I failed as a mother. After 1 month was Bryce 4 kg have been added, but turned out to be a stomach button necessary to the inflammation. Bryce was recorded and treated with materials for prematuurtjes under the 3 kg. After 15 minutes the specialist came to us with the reporting they could not continue the procedure under local anesthesia. His guts were too small and if they had to pull through, he would get a cardiac arrest. They feared she could not get him there. We had to decide at that time from 3 choices: 1) continue with the chance of dying from heart failure. 2) Stop and coming back under general anaesthesia with the possibility of falling asleep after the experiences in the past. 3) stop and do anything with the result of dehydration because he no longer ate.

It was heartbreaking to 5 minutes to determine the fate of your child with eventually 3 times the death as possible consequence. We decided to come back. I wish he would die, not that he had to forgo, but then quietly in his sleep. I knew with my grief no stay, the Dad drove further away in the alcohol in a bar while waiting for the next operation. That in itself was good, they had professors Freyns and Sahar consulted and the dose adjusted. That same day, Bryce was back awake. He was lost 1 tooth because they had to make to place all the material in his mouth. That was the least of our concerns. I was relieved and thought we could back against there. The feeding tube had him well done. Now the inflammation without prejudice can do more to its meager corpuscle. Now he would be able to recuperate. That's what I thought, that's what was hoping for. Bryce went after 1 week at home, back to the day centre when the guidance on Thursday 28 may afternoon called that the power supply in powerful rays came out of his mouth. I took out Bryce on and brought him to the hospital. Kidney failure was the verdict. His kidneys were on the level of an 80 year old. It was assumed that the anesthetic was one of the causes. Transplantation and kidney dialysis were not an option. We had to prepare us for the worst.
Bryce slipped away. We discussed with the family the funeral, I bought new clothes along with his metres in blue and white, as a sign of heaven, pure and hope.

He was operated on Sunday night, we thought he wouldn't come through. Monday morning to chirping and he lay with his hand. Because we got a lot of visitors, we were moved to the Hall, is acceptable to us. Also my mother stayed overnight. Bryce was a fighter, on a week's time, he was again his merry itself. Disbelief came doctors regularly. On June 11, decided one of the pediatricians to the tube feeding back to boot. He wanted absolutely start with the minimum for a child of 4 years. How many times I also pointed out that Bryce never got so much, not even when he was good. The doctor stayed with its position that this was a necessary quantity. After violent insistence, he asked a second reset and reduced the amount of with 1/4th. Still much more than Bryce ever had had. Less than 10 minutes after startup, squirted the food out of his mouth and came a part in his lungs. I have 20 minutes with Bryce sat in my arms while he had shortness of breath. The doctor literally stood with his hands in his hair: "what have I done!" It made me broken, to see my boy as suffering. I could that man do something. Bryce came through, but he was not the same anymore. You could tell he was up. One told us that he probably would not make the Thursday. But our hero was Thursday again with his hands turn and crows. His lungs were now also affected, we heard the moisture râles.

Within the week burned his skin on his buttocks way through the pure gal. But Bryce wouldn't budge, he was quieter and quieter. He hit in a kind of trance or coma. We had put a Chair in the bed so that he could breathe better and not lay flat. He whined if he took up, but coaxed themselves against me. But I felt that he took more and more distance. We were 3 continuous weeks in the hospital, the dad and Grandpa had to go back to work. Grandma and I stayed by his side. That week was Bryce fairly stable, Dad had back hope that Bryce still came home, I knew it was time to let him go, he was tired, fought on, it was time that Bryce was freed of his pain. The last thing I want is for my children that they must suffer. We knew that Bryce had not only fluid on his lungs, but also on his heart and brain. On Friday 19 June 1998 changed anything, I can't say exactly what, but I left professor Sahar. "I think this is his day." I said to the professor. "Call the dad etc. but. " He confirmed. I called the nearest and dearest. Dad should stop directly on his work. His grandfather and peter. The visit came and went. Bryce lay quietly in his chair. It was a beautiful day, the sun shone. Dad decided to get the car to go shine.

My mom had me pancakes with ice cream, I had been there for the week. I left a little ice on Bryce his lips melt. It was evening.
I had in the meantime received a phone call that the Memorial was rejected during the City Council. This forest would be a tribute to all deceased children with a rare disease. To do this, I had talks with all parties and all were they for the idea. I was disappointed that they were back on their word. And told the annoyed at my aunt who was visiting. My mom was on the phone with Grandpa, who announced that he had done with work and came to the hospital. Then I felt Bryce. And he blaaste his last breath very slowly while he went back. For me it was as if Bryce was gonna say: "don't worry mom, quiet, all will be well. Maybe not as we want it, but good. " And I still wear that wisdom. We have with well defined things for eyes, but maybe we should learn that good can be different than we want? Bryce has never been able to talk, but he has brought people together and eyes open, love sown in rusted hearts.

It was hard to get my son to see slip out of my hands. To feel his joy of life ebbing away. To powerless on the sidelines. As a parent, if you only want the best for your children. And it's heartbreaking to see our children refrain. Therefore, I look back on the great moments and I am extremely grateful to Bryce his mother. Because he has taught me what real values are, he has my heart heated with pure love. Despite my pain, I am grateful that Bryce was happy in his short life. He has other more than some can do in 80 years.
 

           

 
 
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