Milestones

Someone asked me today if these milestones (Matthew’s birthday) are hard because it reminds me of James. I would have to say that every day there are reminders of James. Some days more then others, but he’s never far from my mind. Birthdays and such don’t really have any more difficulties then an average day can. The mind has it’s own way of working and you just never know what’s going to set it off or trigger it. Although James isn’t here, he’s still part of my daily life. I don’t think so much on what he would be doing or what he is missing because he’s not missing anything, we are. It’s more just little memories triggered by sayings or things I see or the kids do. Matthew brings back a lot of these memories as more character starts to shine through and we are reminded of a little boy who did the similar things not long ago.

Rebecca has been struggling through her grief this past week. I have a photo album of James’ 2007 pictures downstairs in the living room. Every other day it is her turn to spend Quiet Time downstairs and twice this week I heard a crying girl down there. She misses her brother and it’s so hard to know what to say to her. I asked her if she rather I take the photo album away so that she wouldn’t be tempted to look at it and start crying, but she wanted it left there. She also knows that it’s okay to look at them, to remember and to cry. She has developed a bond with her little brother Matthew over the past half year, but yet her bond for James has not been broken by this, she still misses him.

Matthew has a great love for the pig in this picture. The pigs name is “Babe”. We receive “Babe” as a gift while James was in ICU and thought it so appropriate (not that it was given for this reason, it just came at the right time) to receive a singing pig at a time when James had fallen in love with the movie “Babe” and would watch it for endless hours. James actually did not like the pig, it scared him, but for the rest of us it reminds us of that precious movie. Babe the pig sat in our room on our dresser for some time. Mostly he sat quietly but occasionally somewhat tapped the button to let him sing. We slowly began to realize that no matter what Rebecca was doing at that time (even if she was in a deep sleep), if the pig sang, Rebecca cried. This was reinforced when Matthew fell in love with the singing pig and liked to play with it. Upon too many tearful mornings for Rebecca we hid Babe so Matthew would no longer play with it. He looked for Babe whenever he came into our room, but Babe was hiding in our armoire …. until one day Rob left the armoire open just a little too long and Matthew discovered where his dear piggy friend was hiding. And now he will stand by the cupboard and point and ask for the pig. We turn it off and he plays with it and quickly loses interest because it doesn’t sing. Rebecca is fine to see Babe, as long as he is not singing.

We will have many milestones to work our way through yet. Often I find that when I think something is going to be difficult or bother me it ends up going okay and it's the sudden reminders and strong memories that are more difficult to deal with. Sometimes this can bring me down, but most of the time it is short term and then I don't mind so much, for I enjoy remembering my boy, even if the memories make me sad ... I don't want to forget him and sometimes I feel like he's fading away already. I am so thankful for the hours of homevideos and 100's of pictures we have to keep the memory strong. We miss him, but we have such joy in knowing he is at rest and comfortable now.

Remembering James

Today would have been James 3rd birthday. Since I've already written plenty about James today on James' Story I won't write anymore here.

It's hard to believe it's already been three weeks since James passed away. These past weeks have definitely been different in our house. There are so many simple things we've been enjoying, just because they're simple.

We've been able to get out and do some visiting and each time before we leave I stand at the door thinking "are you sure we got everything, do I really only need one diaper bag?" And I used to think that going out with a baby was a pain ... you know, you have to pack the diaper bag - throw in a few diapers, a change of clothes, a few toys, a couple bottles and don't forget the soother. That's it!! One bag, a few things, done in a minute ... wow!!

Just socializing is something new to us again, we are no longer housebound. The kids are enjoying going out a bit more, we're enjoying renewing old friendships and building new ones. I have the extra luxury that Rob is around and a bit more available then normal and so I can just run out ... yup, all that requires is a purse, funny feeling indeed ... and do some errands, even some visiting without taking the kids. It's a weird feeling not to have to worry constantly while I'm out that I should get back because Rob needs to get back to his studies and can't tend to James that long.

We're noticing the difference at home as well. I find we're more relaxed and have more time for the kids. After school tea-time doesn't feel so rushed and like I'm wasting my precious little time. I can relax and enjoy this time with the kids. Supper time is less hectic ... I even end up having supper ready early most nights. I start at the same time as I used to, but have less distractions ... no more calling everyone to supper and then realizing I forgot to prep James' medications, or get fresh formula ready, or run after the monitor so we can see how he's doing while we eat, etc. We also feel this more relax lifestyle is having it's effect on the girls. They have been doing really well lately (besides the fact that they still fight like cats and dogs) on the behavioural side of things. I now have time for them to help me in the kitchen, which they love to do. So after some fighting it was decided they could take turns helping make the salad or something of that assort for supper. I'm sure the novelties will wear off, but I'm enjoying that I simply am able to take out the time for them now.

We miss James dearly. I'm not sure the ache has lessened, but the guilt has a bit. As we adjust to this new way of life we feel so thankful the Lord has allowed us this time with our other children. James was high maintenance from the day he was born, but really during the last 20 months of his life I felt like I never had the time to focus on the girls. I hope our appreciation for this time will not wear off and that we don't end up finding other ways to get caught up in life, they are only young once and they grow up so fast!!

We decided to just have a quiet family day today. We had explained to the kids a few times already that it was not James' birthday today, for he is not here anymore and will never celebrate his third birthday. We want them to be clear that we can't celebrate a life that is no longer, but at the same time we can still set aside this day as a day to remember the life that did exist. So there was some focus on James and some focus on family today.

This morning we presented each of the girls with a gift. I put together a photo album for each of them with pictures of James and themselves with James. Often they sit at the computer watching the pictures on the screen saver and so we felt this way they could look at the picture they wanted when they wanted. I did not put any writing with the pictures for I feel they will draw their own memories from them and already the ones they don't quite remember they have asked about. We hope that they will carry these books with them for many years to come so that those days will never be forgotten for them either.

During the afternoon we decided to go skating, we hope to do this more often so that the kids will actually learn to skate seeing as twice a year with the school really doesn't build much talent. The girls fought like cats and dogs all morning but it's so neat to see how they really do love each other as they helped each other skate, Marietta especially seeing as she's the oldest and know how to skate better ;)

Matthew came along for the ride. He enjoyed himself until he simply became to tired (was during nap time).

This evening we sat down together to watch the movie Babe. During the last two weeks of James' life we watch this movie more times then we can count ... it pretty much played continously. James loved the movie and didn't want to watch anything else, we love the movie too and so we didn't complain much when all he ever wanted to watch was "Pig". James received a singing toy pig as a gift while in ICU and even though James himself was a little scared of this singing animal we ourselves fell in love with it and named him Babe.

Since the girls were not allowed in ICU until the very end they never got to watch Babe. When they did come to visit we put the TV away so James could focus on them. They have heard much about this movie we love so dearly and so tonight we sat down to watch it with them. We had to stop it plenty of times to explain how it all fit together, and even so, I don't think Rebecca really got the whole idea, but they both got enough to now know what the movie Babe is about.

And so after a relaxing bath the day ends and I'm heading off to bed nice and early to get a good night sleep. It's funny how once your body gets a little taste of sleep it thinks it's so wonderful it wants more and more of it. I still love this idea of how I can go to bed at midnight and even if Matthew wakes up early (6am) I still am able to get a whole full six hours of continous sleep!! Of course I no longer have any excuse for going to bed that late. Before the days were so busy and full that it seemed the only time I ever actually got anything done was from 9pm-12am (technically 11pm since usually James started having troubles around 11pm). The lack of sleep at night meant I had to take a nap each day, even though I so dearly want to skip it and try get something done, but you never knew what the night was going to bring and so any time available for sleep was taken.

Anyways, I said I was going to bed! :)

Four years ago we welcomed into our lives our second son, James Robert. While we no longer celebrate this day as a birthday in the normal sense this does not mean that the day does not go by without remembering the birth that did occur. So much has happened in the past four years that it seem like a lifetime ago, but as I look through the photo albums it all comes back like it was yesterday. I have to fold some wash today and while I fold wash I often pop in a video ... I look forward to watching some of James' life again today

On November 23 we took some time as family to celebrate the life of James. We set aside the day to remember the special boy who touched our lives so drastically. It was also a blessing that this day was a Sunday and so we had to opportunity to be uplifted by the preaching of the word also during this day.

Between church services we went to visit the grave site. I had been previously to see the stone but the rest of the family had not. When James passed away the girls each bought a rose in their favourite colour (blue for Mareitta, red for Rebecca) and placed them in the coffin with James. So this year the girls each bought a rose again and layed them by his stone. They already talk about how they're going to do the same next year. We wanted to add something special to the stone to say "James" and so we also placed James' favourite truck, a Leon's delivery truck on the foundation of his stone. Much thanks goes to the Leon's Customer Service Rep who took the extra effort to track down one of these little trucks for us that were used for a promotion a couple years ago.

In the evening we took some time to watch the movie Babe. James watched this movie endlessly for his last couple weeks of life. He could not talk to tell us what he found so special about it, but he only want to watch this movie and so we watched it pretty much around the clock for those two weeks and it holds a very special place in our hearts. We also took some time to look through James' memory box and talk about some of the things in there. Although the day had it's sad moments it was a nice day overall.

Many have asked how thing went during the month of November and overall I can say quite well. As the montage we posted says "not a day goes by that I don't think of you". This remains true. During the month of November this may have been more so then normal but it was not any harder then normal. And while we cried a bit extra especially on the 23rd it was not overwhelming and it was nice to take some time out to specifically remember a life that meant so much to us.

I would also like to take this opportunity to thank all those who did remember us on this day by sending us cards, emails, notes, etc. We especially loved the little notes/stories that told of peoples memories of James. It's always to special to hear other peoples perspective or memories, sometimes reminding us of things we had forgotten about and sometimes telling us things we had never heard before.

There are many, many things we learned for James. For such a small child he sure taught us a lot, but if there is one thing that we really learned it is to cherish each day we have. To slow down and take as much time as we can to enjoy our family and the treasures we have around us. What a gift and blessing our little James has been in our lives!!

James ~ November 23, 2007 ~

Last year Marietta and I did a presentation about James to her class on November 23rd. Click here to read about this and what we presented. I had taken the poster we made in to Staples and had it laminated so that it would stay nice for a long time. About a month or so after Marietta did her presentation I bought some clips to hang the poster up in the upstairs hall. Three days later I took the poster down and "hid" it behind our bed headboard. Rebecca had not been able to cope with seeing James' pictures hanging there each day.

It has not been an easy journey for Rebecca these past three plus years. Sometimes as parents we ache more for what Rebecca is going through then for what we ourselves have gone through. How can we help her? What can we do to make her feel happy again? How can we teach her how to work through her struggles and recognize what she is feeling and how to cope? So many times I have hugged a sobbing girl and felt my heart breaking as I feel so unable to help her.

When Rebecca came to me and told me that she would like to do a presentation to her class about James I at first did not act upon it, thinking she would likely change her mind in a day or so. But when she mentioned it for the third time, and that she would like to do it on November 23rd I decided it was time to take her up on the idea. Before hand I did talk to her about whether she thought she would be able to do this presentation without "breaking down". She wanted to do it and was sure she'd be okay.

So on November 23rd, three years after James passed away, Rebecca presented her brother James to her class. She did an excellent job and only during the last paragraph did she struggle a bit, but she held it together. What an accomplishment for our girls!! While she may struggle, I am proud of how well she did and that she would even take the effort to try something she knew would be difficult.

We did the same presentation Marietta did last year (last years post) and brought in some of the medical items we had - oximeter, stethescope, nasal prongs. Rebecca also took along the book James' Story which she had just received her own copy of that morning.

After school we made a trip down to the cementary so the girls could each lay their rose at James' stone. This year the girls did watch the movie Babe, something they were unable to handle last year. At first Rebecca did not want to, but we convinced her to give it a try and she did well until the last bit of the show. The girls also spent some time rumaging through James' memory box and talking about the things they remember. While it can be difficult to recall and refresh these memories it is also good.

While we know that Rebecca is not through her journey of grief and may never be, we are happy to see signs of progress in the last half year. We were especially thankful to see that after James' "anniversary" she was able to bounce back, the next day being happy and energetic, instead of being dragged down and miserable. This is definitely a sign of improvement for which we are very thankful! We continue to pray the Lord will grant her more healing and strength to cope with life as it comes to her.

James: ~November 23, 2009~

It's hard to believe that date was already two months ago. Time really does go by fast.




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.