letter to the world from a missionary mom

My oldest boy just left on a mission. I really want to pin a note to his shirt...

Dear World,

This is my precious boy, please be kind to him because he loves you, he loves you enough that while other youing men his age are going to college, dating and partying he has volunteered to forgo all that, spend his life savings and dedicate the next two years of his life to bring you a gift. This gift is a simple message and a knowledge of something so wonderful that it has made his life better and given him peace and joy. All he wants to do is share this with you. You may choose to reject his gift, that is your choice, he knows that. But, how will he know who wants this gift if he doesn't ask? So if you are not interested in what he so lovingly offers just smile and say “no thank you” you really don't need to be mean or rude to him, Is being kind to someone who loves you so much such a bad thing to ask? So as a favor to me, his mother, please be kind to him?

With Love

A Missionaries Mom,

Melody

Jim's choice

We told Jim he would have a vote in the decision on weather or not to have the surgeries to help his seizures. We thought it would be wrong to force him to have the surgeries. We went to the doctors to talk about it Friday, at the appointment Jim was saying “no way I don't want any more surgery.” He didn't even want to talk about it, he would get upset if we even suggested talking about it, so we told him when he was ready to discuss it to let us know. Well last night, just before bed, he said he wanted to talk about it, he wanted Dad to make a list of the pros and cons and we talked about it and prayed about it and Jim decided that he wants to do the surgery. So this morning he woke up at 6am wanting to know if we had scheduled it yet. He just wants to do it right away. I do feel better about having the surgery done but, it probably won't happen for a few months because of the doctors and hospital scheduling.

Decisions, Decisions...

We get to make a really tough decision tomorrow. Not one I'm looking forward to . We need to decide weather or not to have Jim go through 2 more brain surgeries that would hopefully make his seizures stop. *ugh* how do you make a decision like that, how much input do you let the kid have? His other brain surgeries he was too young to really understand and the decisions were no brainers, (no pun intended) he was 4 and it was either surgery or die. Now Jim is back up to 2 or 3 seizures a day, he was having 6-12 a day this summer so three seems pretty small in comparison. In fact it seems downright minor compared to what he has been through, unfortunately the seizures seem to be increasing again even though we have been increasing his medication. So if he says he'd rather have the seizures than the surgery do I let him have the final word? Is 10 years old too young to make that decision? If he really wants to not have surgery and we think it best do we force him to do it?

Stuart and Ben finally got home at 9:30 they won "Best Game Play" (they didn't award 1st 2end etc this year, they awarded best music, best graphics etc.) Stuart & Ben were happy with that Stuart said that it was just the same as first place, I'm not sure the guy who did the graphics or the girl who wrote the music would agree.

Stuart and Ben finally got home at 9:30 about 36 hours after they left Friday morning and then we had to go back to the Expo Center. Stuart was so tired that he FORGOT his computer and left it there, Luckily it was still there...

Cheater Cheater

I received a letter in the mail from Jim's School it was a note from the school nurse. They had a vision screening at school and they are very concerned, Jim's vision test showed he has 20/100 vision in the left eye and 20/100 in the right eye. I wish! Since his brain tumor his vision has never tested better than 20/200 in his left eve and he can't see at all in his right eye. He usually tells them he "doesn't see very well in one eye," they will check his left eye first and assume that is the eye that he does not see very well from. Then they check his right eye and freak out. He must have cheated on his eye test, he frequently cheats on eye tests. I'm not sure how he cheated but he has cheated on eye exams before. He usually peeks with his "good eye" or tries to sneak closer to the eye test. I do find myself hoping that the schools eye test is correct even when I know it can't be. We were told his vision would never improve and we just had Jim thoroughly checked out. Isn't it silly that one incorrect eye test that I know is wrong can still get my hopes up?

I just wonder why I got a letter from the school that knows my kid is legally blind telling me my child has less than perfect vision.

halloween costumes

I always have made my kids Halloween costumes. I started doing it because my kids always seemed to want to dress as something that they didn't sell costumes for, now I do it because it is cheaper than buying. Some costumes I have made are a zebra, roadkill, a harry chested pirate, Captain Hook, a duck, and the tooth fairy. This year Jim wants to be a storm trooper because he bought a toy gun that looks like a storm trooper blaster. I'm not sure I could make a good storm trooper costume so in an effort to talk Jim out of the storm trooper idea I pointed out that: he couldn't take the gun to school, I probably couldn't make a good storm trooper costume, and He couldn't wear a mask, and to really look like a storm trooper he needs a mask. Then I said "why don't you try to think of something else" so he come back a few minutes later and says "I Know what I'll be instead of being a storm trooper,.. I'll be Luke Skywalker disguised as a storm trooper"

We spent a month at the hospital last week

It was Jim's MRI and brain tumor clinic one day and his Epilepsy Clinic the next day. It wasn't really a month we spent at the hospital but, it sure seemed that way. Jim got an IV, blood work and a blown vein. He had his hearing tested in audiology, He had an MRI and X-ray done, we went to Brain Tumor Clinic and Epilepsy Clinic and endocrinology, and saw what seemed like every doctor on the planet, although Jim assured me that that wasn't actually true. at one time I found myself explaining to the Brain tumor clinic coordinator why Jim sees 2 neurologists, 2 neurosurgeons and 2 neuropsychiatrists (one of each specializing in seizure surgery) and 2 ophthalmologists(one is a neuro ophthalmologist) then she said "and only one oncologist?"

The results? all good...
-Stable MRI!
-No endocrine issues, His endocrinologist keeps thinking there is a problem with his pituitary, but his levels always seem to be fine this time, and surprisingly no thyroid problem yet.
-His bone age test showed that if everything goes well he should be "average" height when he grows up. Average is very good all of the rest of us are "below average" height.
-Hearing is good, no radiation damage there either.
-No new concerns in any other areas!!!
-They were going to schedule his surgeries for his seizures but, he is down to 1 or 2 seizures a day, they want us to increase his meds even more (he is at a full dose for a child) to see if we can get full seizure control. We will meet again in December to see how he is doing. No brain surgeries makes a mom happy!

Wooo Hooooo!

wonderful life

Jimmy wrote me a letter a few months ago, I keep it by my desk as a reminder.


Dear Mom,
Thank you for being so caring. It is so nice when you make me breakfast. Thank you for being so nice. You have made my life wonderful.
Love, Jim

It is nice that he is thanking me, and I am glad that he likes the breakfast I cook him, But the best part is the last line "you have made my life wonderful"

humm....lets see the poor kid is legally blind, suffers from 6 to 8 seizures a day and he thinks his life is wonderful !
Perhaps I should stop complaining about all the little stuff that I think makes my life difficult, and start enjoying my wonderful life.

more Jimmy seizure updates.

Well the epilepsy surgery board doctors met they decided that Jimmy did look like a promising candidate for seizure remediation surgery. They sent us off to have more testing done. We did a long day of Neuropsychology testing and they wanted some visual field testing, both doctors had cancellations so we got the tests done right away. Unfortunately, the epilepsy surgery board won't meet again until the first week in June, me and Jimmy will be there to discuss things further with them. They are talking about a two part surgery where they open his skull and lay a "mesh" on his brain to see exactly what parts of his brain do what, they will leave it there for approximately a week and then if everything looks good they will go back in and remove the places that the seizures are coming from.

Jimmy's Seizure update...

Jimmy's seizures keep getting worse He started having seizures about a year and a half ago, They started on the right side of his face and lasted maybe 10 seconds he had about one a day. Then last spring they suddenly started getting dramatically worse, now the seizures involve his entire body and last a minute or two and can take 2 to 20 minutes to recover from. He has fallen down stairs, dis-located his elbow, sprained his wrist, broken his glasses and acquired many bumps, bruises and scrapes from his seizures. He is currently on 3 seizure medications, none of which work, we have tried many others and, only one seemed to work: he was down to only two seizures a day while he was on it however, It also made him very sick, he lost almost 15 pounds and threw up everyday in the 3 weeks he took it before I had them take him off it.

We are now testing Jimmy to see if they could do surgery to remove the part of his brain his seizures are coming from. He stayed in the hospital for an "Extended Visual EEG" in December. After 3 days and 14 seizures they sent us home 2 days early because they had enough seizures recorded. The only thing that they could tell us from that testing was that the seizures were originating from the left side of his head, *ugh* . Thanks, but we already knew that! A couple of weeks ago we did a MEG (Magnetoencephalography). we had to keep Jim up all night the evening before the test. He was really excited to pull his first "all-nighter" about 1am he decided staying up all night wasn't that fun after all and by the time we got there for the testing he was very angry with me for keeping him awake. They took about an hour getting him ready for the test and he kept falling asleep sitting up while they were gluing electrodes to his head. He did sleep just fine during the test, I still feel a little sleep deprived though. The results from his MEG showed "lots and lots and lots and lots" (the doctors words) of excess electrical activity and that there are two separate places in his brain that are causing the seizures, so there are 2 parts that they would have to remove to stop the seizures, but surgery looks "somewhat promising" our next step is to get a bunch of neurologists, neurosurgeons, and other fancy titled doctors together to look over all his information to see what they they think our next step should be. It could take months to get all those doctors together for a meeting. so for now we Just wait and wait and wait....

Letting your kid be a kid

I let Jimmy ride his scooter today, I made sure he wore his helmet and then I stood there and watched him zoom up and down the street with fear squeezing my heart, I was so worried he would have a seizure and end up face down sliding across the rough asphalt. But he had so much fun. Jimmy got his scooter a year ago for his birthday, I figured it was safer than a bike for a kid who was legally blind. He loved his scooter, he rode it every single day and then the seizures got worse, they went from being just on half his face for a few seconds each day to his whole body being involved 5 to 7 times a day. So I quietly put the scooter away. He asked me yesterday if he had enough money saved to buy a scooter and so I told him we still had his.

Yes, it would break my heart to see him hurt himself again when he has a seizure, but, it also hurts to tell him he can't be a kid and do all the stuff a kid wants to do. Where does a mom draw the line between trying to keep her kid safe and letting him live as much a life as possible. Yes, I have nightmares about him having a seizure and seriously hurting himself or worse. But, I also don't want him growing up without a childhood or with anxiety, constantly worrying about hurting himself. So I continue to walk the line and worry about if I'm doing the right thing.

The Death of a Minivan

I proudly drive a 1998 dinged up minivan... well, maybe not that proudly. It has been a very reliable vehicle so I have been trying to make it last for another 2 or 3 years when I figure we won't need a minivan anymore. It wouldn't start Sunday, I thought that perhaps the light was left on. We jumped it Sunday and let it run for a few minutes. It started just fine after that. I was taking it in for an oil change anyway on Monday morning so when I brought it in I asked them to rotate the tires, check the battery and do the oil change. 45 minutes later I was told that it needs new tires, and the lug nuts were so rusty they did not think they could remove the tires to rotate them with out replacing some lug nuts at $20 to $30 each. Since it needs new tires anyway perhaps I should wait and just replace the tires instead of rotate them. Oh and by the way, it also needs about $450 dollars in repairs. So lets see... $400 new tires+ $450 repairs + $200 the windshield it also needs... I told my husband that if it ever needed more than $1000 in repairs we should get a new car. I don't want a new car! I hate car shopping and We REALLY don't need to spend the money right now! So I left very depressed.

I ran some more errands after that. When I got back to my van it wouldn't start. It would not even crank a little. So I was going to have to jump it. However, the van was parked very close to the car in front of it. I couldn't walk to the front and reach the hood release latch. So I'd have to push it out of the parking stall, up hill, to get access to the battery to jump it. The person who parked on my left side had parked so close that there was no way I would be able to push the van with the door open to steer it and push it at the same time. Ugg! I sat there and said a little prayer and when I was done the lady parked in front of me got in her car and drove off. I quickly put my van in neutral and rolled forward. I finally was able to get it jumped and drove straight back to the auto shop where I very politely asked them if they checked the battery they didn't know so they checked it again "It has a charge now but that doesn't mean it will hold a charge for long. The battery is 4 years old, probably time for a new one for $100. Oh, and by the way your tire looks low let me fill it. "

I returned home stressed out and depressed and tried to get some house work done. When my husband came home an hour later he discovered the van had a totally flat tire. Me and my husband spent over an hour on our hands and knees trying to change the tire. Remember the rusty lug nuts?

We got the tire patched and a new battery, but, it looks like we will probably need a new vehicle. I messed up my bad knee and did something to my shoulder trying to help get the tire changed. I guess I am getting to be as old as the minivan. Should we replace me when I get too expensive to repair?

update on Jimmy

Jimmy has seizures, lots of them, all the time. It's one of the many fun side effects of having a brain tumor and brain radiation treatments. (radiation, the gift that keeps on giving) He has been having between 4-8 seizures a day. We have been trying every medication in the book to try to stop the seizures he is currently on 3 different medications for his seizures. He is also going through precocious puberty and the doctors think the increase in hormones may be contributing to the seizures, so now Jimmy will be taking Lupron injections to stop the puberty.

A few weeks ago Jimmy started a new medication to try to stop his seizures. the day after he started the medication he also began complaining of a tummy ache, so he has been throwing up every other day for a couple of weeks, he even felt too sick to go trick-or-treating. At first I thought he had a stomach bug but three weeks later he is still sick. So now I am thinking it is his new medication. However his seizures have also decreased to only 2 a day; So would he rather feel sick all the time or have seizures? Ugg.

Jimmy is scheduled to stay in the hospital for 4 days do a VEEG to see if they might be able to do surgery and remove the part of his brain that is causing the seizures. So do I hope they can do surgery and remove part of his brain or do I hope thay say that they can't?

It's all good

my 19 year old goes around saying "It's all good" I think he means it as I'm alright or no thank you. But it got me thinking.

One night My husband asked Jimmy "if they could do an operation to make your eyes work would you do it" I cringed: there is nothing we can do to make Jimmy's eyes better I don't want to get his hopes up. But, Jim's answer surprised me, he said "no, then I would not be who I am."

I remember sitting in the hospital alone while I was waiting for Jimmy to wake up from sedation after one of his daily radiation treatments, I had LOTS of time to think. I was thinking about my little brother who is deaf and what an incredible young man I thought he was. I thought his struggles with his deafness probably had a large part in moulding his character and making him such an amazing individual. I hoped that Jimmy would turn out to be of such strong character; maybe Jimmy's "visual impairment" would help build his character in a similar manner. If I had a choice to have my son with perfect vision but unhappy and of poor character or have him be visually impaired but, happy and of strong character what would I choose?

Well it's not my choice. But, it seems to me that in the end if we go through life with the right attitude the trials help to make us better in ways that we otherwise wouldn't have been. Life builds us in unexpected ways. In the end I guess "it's all good" after all.

Siezures

Jimmy had a seizure last week, well actually he had a lot of seizures last week, he has anywhere from 5 to 8 seizures a day, but that is "normal" for him. But, last week when he had a seizure he was sitting at his computer desk, his arm went forward and got caught in the keyboard drawer and then he fell off the chair. He dis-located his elbow. Recently he has also had a seizure at the top of the stairs, and fallen all the way down the stairs, he had had seizures where he had fallen so hard that he bloodied his knees, had seizures where he went face down in his bowl of breakfast cereal, I worry he could have drown in his breakfast. The poor kid can't even shower or take a bath alone. It is so frustrating! nothing we have done seems to help we keep trying all these different medications and he just keeps getting worse. If Jimmy is sitting down he usually won't fall over, so I find myself not encouraging him to do any physical activities, What Kind of life is this for a 9 year old boy? He used to be aware of what was going on when he had a seizure but, now he is only "aware" about half the time. Sometimes when he has a seizure I just sit on the floor holding him and crying.