A few weeks before the 23rd Marietta class was discussing the handicapped and learning about places like Anchor and The Beacon (hence the school trip there). It was during this time that Marietta told her class a little about James and the teacher felt that maybe she would like to tell her new classmates a little more about her little brother. She asked if I would like to help Marietta with this.
Together Marietta and I discussed James and what information we would like to present at a level her classmates would understand. First I spent some time discussing with Marietta whether one could consider James handicapped. After going over with her the definition of handicap and a few other words it was concluded that although James would fall under the definition of handicapped (something that hampers or hinders; the condition of being unable to perform as a consequence of physical or mental unfitness; put at a disadvantage) to the average human concept of handicapped it would be better to describe James as medically challenged.
We spent some time going over how to explain James in simple language and then reviewed pictures to include. I must admit that I probably enjoyed the project just as much, if not more then Marietta. With the information that Marietta and I worked and the pictures we talked about including I put together a poster/display. Marietta helped me glue everything down and get it ready and then I had it laminated so it will stay good and not get damaged easily.
On Monday, November 23, two years after James passed away, Marietta and I presented James to her classmates. To be honest I figured the students wouldn't really care much about someone elses sick brother, but I was surprised and impressed with the amount and kind of questions the kids came up with. They were especially thrilled after the presentation when they had a chance each have their SATs checked on the finger oximeter
After school that day we all went to the cemetery (only two doors down now, providence?) and the girls lay their annual blue and red roses there. We had thought to make it a tradition to watch the movie Babe (James watched this movie endlessly for his last couple weeks of life) each year but the girls did not want to. Obviously this stirs up too much emotions for them as they never turn down a chance to watch TV (especially since we packed it away after our move), even if it's the hundredth time watching Barney. Instead we had some family time and it being a school night they went to bed at a reasonable time.
The following is the speech/presentation Marietta did(there was some interaction with the kids with her asking questions to keep them involved and interested) . I helped in a few of the harder spots with describing his illness, but Marietta did the rest.
My brother, James Robert Van Middelkoop, struggled with LPI and PAP.
L.P.I means Lysinuric Protein Intolerance - this means that James’ body could not break down protein
P.A.P. means Pulmonary Alveolar Proteinosis - this means that James’ lungs filled up with surfactant which is an oily fluid in the lungs and then he could not breath good.
When someone has LPI it means that their body is not able to digest protein.
Does anyone know what protein is?
Protein is in the food we eat
Protein Helps our body to do many things so that we can grow
-it helps you grow strong muscles
-it helps many of our body parts to grow and be healthy- like our hair, skin, eyes, etc
-it helps your blood and helps you to heal from sickness or infections
-it helps your body get its vitamins and fat
Our body must have protein in order to grow and stay healthy, but James’ body could not break down the protein that he needed to stay healthy. If James had too much protein he became very sick and would need to be in the hospital to get better. But if James did not have enough protein he could also get sick. So we still had to feed him a little bit of protein so his body could grow and his muscles stay strong. Every time James would eat he had to take a special medicine to help digest the protein in his food. We had to make sure he got just the right amount of protein - not too much, not too little.
It is hard to make sure someone eats just the right amount of protein ... BUT .... it was even harder because James refused to eat or drink.. He would not eat and he would not drink, not even from a bottle.
Now what? How does someone grow if they won’t eat or drink? How do you think we made sure he still got the food he needed?
James was fed using a feeding tube. The doctors made a small hole in James’ stomach and put a tube in it so that food could go straight to his stomach. James’ food was a special milk that had just the right amount of protein. James’ stomach did not work like ours and so his stomach could not "eat" the food as fast as we do. It would take 2 to 6 hours to feed him one meal. He had to be hooked up to his feeding machine for many hours of the day and night.
James was one and a half years old before the doctors figured out that he had LPI. He was often sick and in the hospital.
Why was it so hard to figure out?
How many people do you think have LPI?
In the whole world there are only about 100 people who have LPI
After the doctors figured out James had LPI we thought he would be healthier and no longer be in the hospital all the time. Only three days later he was back in the hospital and instead he got sicker and spent more time in the hospital.
James spent most of the summers when I was six and seven in the hospital. When James was in the hospital my sister and I had to stay at other peoples house because my mom lived at the hospital with James. We would stay at different house, moving from one place to the next and sometimes stayed at home with my dad. It was kinda fun at first to stay at other peoples houses, but I missed my family. We would visit James and mom at the hospital, I even had my 6th birthday cake and presents at the hospital.
Every time James was sick it was like he had a very bad cold. He had trouble breathing. Finally his lungs became so sick he needed a machine to help him breath. The hospital in Hamilton where we lived could not figure out what was wrong so my mom and dad took him to SickKids Hospital in Toronto. The doctors there told us James had PAP.
What is PAP?
When a person has PAP their lungs fill up with surfactant. This is a oily substance that everyone has in their lungs to help them breath. Our lungs are always making surfactant and getting rid of the extra surfactant in our lungs. James lungs would make the surfactant but his body was not able to break it down and get rid of it. Slowly his lungs began to fill up with surfactant and he had a very hard time breathing then.
Can you guess how many people in the world have both LPI and PAP?
(hint ... there are only 100 people who have LPI so it has to be less then that)
About 25 people in the whole world have PAP
After six weeks in the hospital James could go home but he could still not breath good and so he had to wear an oxygen tube. This is a tube that blows air into your nose to help you breath. This also meant that now he had two tubes he was hooked up to almost all day and night - one for his oxygen, one for his food. It is very hard for a little boy to run, jump and play if he has all these tubes and machines to take with him.
When James got even sicker he went back to the hospital in Toronto. My mom and dad, my sister Rebecca and I also moved to Toronto. We live in the Ronald MacDonald House.
Has anyone heard of these homes? What is so special about these homes?
The Ronald MacDonald homes are for families with sick children who are at a hospital far away from home. You can live at the house, which is close by the hospital, and they have a school for the kids as well as craft times, game times, and other fun stuff. They would also make big fancy suppers for us a few times a week. You could stay there for as long as you needed to. We stayed until James died.
James was in the SickKids in Toronto for two months before he died. The doctors tried to clean his lungs three times but it did not work. It was a very serious and dangerous operation that had never been done on such a small child. During the last operation James’ lungs were too tired and sick to keep working. They stopped the operation but James’ lungs never got better and three weeks later James’ battle was over. He died and went to heaven to be with his Heavenly Father and Wonderful Saviour. I miss James, but I know that he is in a much better place now where he is all better. Today it is two years since he passed away on November 23, 2007.