It's All Good

Wow, Jenna had a healthy baby, Myles went to his first High School dance. Life is Good, no Great!

Scars, What scars?

We all have scars, some that can be seen, some that are hidden in our souls. Show your scars of life and be PROUD. It proves that you survived. My son does. Isn't he gorgeous!!!!! The top picture was taken last October, I can't believe how much buggies has changed in under a year.

Ok, my mom is done with the proud stuff,

High School is crazy, it's busy, and really nice to be around my friends again. I am still trying to figure it all out. Love to all,

Myles and Sherry

Hemophilia Camp 2008

Hey everybody, this is Myles. Hemophilia camp was awesome. I met lots of new friends with hemophilia and cancer survivors. The rapids were really fun and I flipped my kayak over many many times. Spending time with my brother was really fun and he needed it. It was nice to see him away from the stress of work and just life. I definitely want to go back with Aaron next year because my mom is boring (lol)! The rafting trip was on the Salmon River in Idaho and was very pretty. The water wasn't as cold as the Green River in Utah but it was enough to make you very cold. You can tell that the kids that survived burns are tougher than the kids with hemophilia but each one feels a different pain (I've felt them both!).

Pretty excited about starting High School, it should be fun being with my friends again. I hope that I don't get "bullied" up too much. I'm sure that Aaron will go to my school and fix things if I do. Can't wait for next summer to back to both of the camps.

Love to all, Myles

P.S. Aaron took over two hundred pictures on our trip and is making CD's for everyone. Here is a few of them.

Only to Witness

Myles and Aaron are at the hemophilia camp. They are rafting down the Salmon river with a forecast of large hail, rain, and gusty winds. WHAT A GREAT MEMORY FOR MY SONS! I have time to think when buggies is gone. Time to think of how much I love him, time to think about who he is, time to think of my role as his mother. I have realized that I am only a witness to Myles' life, a person in the audience to witness the play. Most parents feel that they are the directors of their childrens life. It is their job to direct and guide their childs role in this life. I have always felt this way to, until now. Myles has a direction in life that really has nothing to do with me. Yes, I am there to love, comfort, inspire him, but who he is seems to come from somewhere deep inside him. I can only stand back and watch. It is way beyond anything that I can contribute to. He has always had this direction, but I think that facing death as many times as he has, it has grown. It's really hard to explain. His presence to anyone who is near him brings about a comfort of life, a sweet and gentle unspoken reason for life and living. He knows something that most of us don't, but he doesn't know what he knows, it's just in his soul that he can't explain. I witness it daily, old, young, affluent, and poor, they all feel something when they meet him. I have relinqished this duty of mine, and I will just witness and learn. Sometimes that is the only thing to do and I am SO honored.
And a woman who held a babe against her bosom said, "Speak to us of
Children."
And he said:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit,
not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you
with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that
is stable.
-- Kahlil Gibran

Great Weekend

Just got back from swimming and a BBQ at Aarons. We had a great time. I love watching my two guys swimming in the pool and playing, they SO love each other. Life has definitely settled down and feels back to normal. We infused Myles through his port and it worked wonderfully, no more multiple needlesticks and hour after hour of frustration, YEAH!!!! Myles and Aaron are going to Idaho's hemophilia camp in a few weeks on the Salmon River over by Yellowstone. What great bonding for them (as if they need anymore). I love my sons so much it's almost surreal. I picked some veggies to bring to Aaron's, nothing like fresh picked for dinner. All is good!

Floating the Boise River

Myles, Dave, and I floated the Boise River yesterday for a couple of hours. The weather was hot (99 degrees) and the water was freezing cold! Keeping up with these two boys will either keep me young or make me old real fast.

LOL

My Help

Myles and his friend John have been helping me with all of the vegetables. It is amazing the ownership and admiration that they have gotten. Planting, pulling weeds, running the stand. I am sooooo proud of them. I have them run the cash register to expose them to the new world that they will be entering soon. Lots of hard work AND fun.

Burn Camp 2008

We received the pictures from burn camp and they are fantastic. I sent a link to all so they can view them, but just in case I forgot someone, here are a few. I don't know how to attach a link in this window but when I find out (Aaron's help) I will. It is so apparent what a great time Myles had!

Opening Day

OMG! (as Deirdre would say, LOL) we had so much fun today. We opened our vegetable stand and had about fifty people show up. I made 20# of pulled pork for sandwiches with my infamous Amish Coleslaw. Lots of fun meeting new neighbors who seem to be excited about what we are doing. I have never seen the look of appreciation on buggies face like today. He has been helping me so much (with the exception of surgery), pulling weeds, staining the deck, picking and washing vegetables, he has been with me through it all. He got so much gratification of seeing people's faces on their excitement of it all. Aaron, Tuyet, and my sister Darlene, were all here. WHAT A GREAT DAY! We have veggies, farm fresh eggs, frozen bananas, Italian Ice Cream, what a loving neighborhood thing. People showed up on motorcycles, quad's, all kinds of stuff. There were actually people here today that met their neighbors for the first time. I LOVE THAT. Everyone around here knows the story of buggies, so when they saw him being a normal fourteen year old I think it filled their hearts. My heart was filled today also. Good day............

The Deck

I finished it! I built this deck all by myself (not bad for 51). It took me around three days and some very sore nights, but it's done (it's 16 feet x 10 feet). The only thing left is the canopy. Myles help me stain it last night and it looks great. We took his IV out yesterday but the area of the stitches and port is still a little sore. Other than that he is doing great. Good thing that he could still play video games through all of this, that ALWAYS seem to help the pain.

Happy Fourth of July

Myles is doing great! He is down to a regular Tylenol for pain, yippee. He is moving his right shoulder pretty well (port side) and I think that by today he might be back to normal, just no lifting. He is receiving two doses of factor a day through an IV that they left in his arm for four more days. We can't use his new port for around a week and a half. It looks really good, his last port was on his chest muscle and really stuck out under the skin. This time they put it in the pocket where the shoulder meets the clavicle. We are all so HAPPY that he doesn't have to be stuck ten or eleven times just to secure a vein, double yippee!! Good decision.
We are going to just hang out at home for the day as he still isn't into being around fireworks and I want to stay home to make sure my house doesn't burn down. Having hundreds of acres of fields around us makes me a little nervous.
Happy fourth to all and stay safe.

The Port

Wednesday 5 am.
Myles' surgery went well. He had a pretty rough time yesterday recovering because of vomiting most of the day (good ole' anasthesia) and anyone who has had surgery knows that throwing up with stitches in you is not fun. By last night everything seem to finally settled down. The pain was rough for him right after the surgery but that too seems to be calming down. When we showed up at the hospital yesterday morning (which was a pretty quiet drive) his dad was there waiting. Myles lit up like a lightbulb and was in a great mood in pre-op. Thank you Gino, it helped soooo much. Hopefully we get to go home today!! All of your prayers worked great.
Sherry
P.S. Kate, do you have a hotline to God?

Surgery Tuesday

Myles will have surgery on Tuesday to have another port implanted. We are destroying his veins with too many needlesticks. It's been a hard decision to make especially with it being "our choice". All in all, Myles, Aaron, Tuyet and I have all agreed it is the right/best decision. With much consultation with the surgeon, he is going to put the port near his shoulder blade and shoulder. He feels that this position is the best considering that buggies is going to be in high school (won't get bumped so much). The only down side to this placement is the extened pain for healing. Wow, Myles in more pain, what a concept! You could cut off both my legs if I could take his pain from him. The recovery time could be as long as two weeks but hopefully this will be better for him in the long run. His surgery is at 9 am and he will remain in the hospital for the night (if all is good). I pray that it all goes well and his pain level after surgery is tolerable.
Love to all,
Sherry

The Garden

The vegetable garden is coming along well, delayed by the cold spring that we had. It seems that we went from winter to summer. I got really behind when buggies was in the hospital but with a lot of very hard work, I seem to be catching up. Myles and his friend John started to "work" for me yesterday for a few hours a day. I have them digging some beds and today they will build my green bean tepees. I don't have enough veggies to open my stand yet (lettuce, spinach, and turnips) but it will be soon. Hope, my darling goat, decided that she loves bell pepper plants and ate around 10 of my 35 plants (along with 25 organic strawberry plants). I grew them all from seed so I kind of took it personal. I put up a hot wire fence about 6 inches from the ground, well you get the point, she hasn't been in my garden since, my poor little darling was SO MAD when she got zapped. I need to get going on the shed to finish it off, at least the hard work is over on that (see before and after pix). I also recieved my small freezer so I can sell Italian Gelatto Ice Cream. I told the boys yesterday that they could make frozen chocolate bananas and sell them but they have to be in control of the business on them. We'll see. Well just an update on the garden. Love to all.

Home from Burn Camp

Hey everybody this is Myles,
I just wanted to give an update on how I have been and how burn camp went. Life has been good, I've just been hanging out and being really sleepy because I just got home. Burn camp was so more than what I expected. Last Friday was full of anticipation, I woke up from hardly sleeping and sat around just waiting and waiting. We left for the airport at around noon and my flight took off at around 4 pm. The first day was filled with introductions and meeting new people. I met a friend, named Drake, and we ended up hanging out together all week. We were both the new guys on the trip. Second day was more exciting with rapids and kayaking, mosquitoes were pretty bad. The third day, was even more fun since everyone started to get the camping spirit and playfulness. Rapids got a little bigger and water fights got more crazy. We camped along the shore every night, the food was great (we even had pork tenderloin with halibut) and sat around in a big circle and talked about the day and each other. The fourth day was one of my favorites because it had the biggest rapids and I was one of the first new campers to go on them in a kayak. That day I was really sore because of all the paddling and rowing. We used an Eskimo blanket to fling people in the air, we flipped over the rafts and made a water slide with them, we lined up the kayaks and tried to run across them without falling in the water, and fun stuff like that. The hardest part of the trip was leaving my new friends, but we had a great time and are going to keep in touch. The fifth day was hard because it was the last night that we got to spend together but we made it count by doing all of the fun stuff. We woke up early on the sixth day so we could get on the bus and take the six hour drive to Salt Lake City. Then I flew home. I had a really great trip and can't wait for next year.
Will post some pictures when I get them done. I even had my toenails painted by the girls!
Love to all,
Myles

It is Time

I was not allowed to tell everyone how Myles lived. His name is Dan. He did not want me to tell anyone what he did, how he saved Myles' life, but I think the time is right. With all of the media surrounding buggies accident, he did not want to be in on all of that. Things have calmed down and I think that only friends and family see this blog.
I'm not too sure how to write about Dan. God placed him in the right place, at the right time, for Myles to live and every time I am in his presecnce, I am in total (don't know what word to use). Dan is a wrestling couch here in Nampa. According to his sweet and loving wife, Jennifer, Dan has never missed a wrestling match in years. That day (2/17/07) Dan decided to not go to his wrestling match. Jennifer says that she couldn't believe that he would miss a match but she accepted his decision, but Dan couldn't explain why. They ended up going to the gas station to get gas, their car was in the next bay of where Myles was. When the explosion happened, everyone was looking at the car and the flames. Out of the corner of Dan's eyes, he saw a flash of flames running. He said that the flames were so big that he could not see what was on fire. Myles ran behind a building, in his frantic, and Dan ran after him. He says that Myles was running so fast that he could not grab him so he tripped him to the ground. He layed his body on top of my son to put out the flames. The flames were so big that they wouldn't go out so he took off his shirt and smothered them. Dan received some burns but not enough to merit hospitalization. This is the first time I have told this story, at Dan's request. He is the heroe from God that was supposed to be there (a guardian angel?). No one else saw buggies on fire and with him running behind a building, would of certainly burned to death. My gratitude to God and Dan is beyond anything that I could write. To Dan, no words can describe my gratitude for you being on this earth, my son is alive because of you. My other son was not charged with manslaughter. He doesn't feel that he has done much, little does he know how much he HAS done for us. THANK YOU DAN!

Taking A Deep Breath

Well I just back from the airport........Myles is on his way to Salt Lake City for burn camp. We spent all week with Orthopedic surgeons, hemophilia doctors and surgeons for his up an coming port. Our calendar has been full to the brim and the second I walked away from him at the airport there was this eary screeching halt. Sleepless nights have seem to be the norm for both of us lately, him in utter exitement, and me in "Oh my God, he is going to be in the middle of no where for six days" worry. No hospitals, no hemophilia specialists, no cell phones, No, No, No.... He has been driving me crazy for the last two days. "48 hours till I go, 36 hours till I go, 24 hours"..... I am not sure if he is excited about white water rafting 92 miles in the middle of no where or getting away from me. It has been a lifetime (exageration, a year and a half) since buggies and I have been away from each other (excluding his time at school) for more than a day. Poor kid! Poor me! Trying to figure out all the medical supplies he needs "in the middle of no where" has been tough, factor, syringes, ASEPTIC SUPPLIES, ice packs, extra needles, hope I got it all. His camp counselor met us at the airport, he is from here, and I think I overwhelmed him some with all the motherly instructions. It wouldn't be so bad if Myles wasn't such a daredevil in ALL that he does. Is this a Ganley trait? Doug (his counselor) reassured me that they already have Utah lifeflight informed and waiting.
Myles was very quiet on the way to the airport compared to the last few days of irritating excitement. When we hugged our goodbyes, he just said "Mom, just remember, there is finally something good about being burned". I quickly hugged him (again) turned away and started to cry. How true. I am still crying (half for happiness, half for sorrow).
P.S. Myles just called me to tell me that they have a limousine to pick them up from the airport. My love is never ending to the people that acknowledge the pain and suffering that burn victims go through and want to make it better. Now I am really crying!!!!!!!!!!!!!

Birthday Weekend

Is August an aphrodisiac month? There are so many birthdays in May! Last weekend was Myles and mine's birthdays. Aaron treated us on Sunday (my birthday) to a wonderful dinner in Boise. The restaurant was right on the Boise River which is in it's glory with all of the snow melt. Monday was a tough day (Myles' b-day) as he woke up with his right elbow bleeding again. We were lucky to find a vein in TWO sticks, yeah!!!!! He couldn't use his right arm so we we were limited at what we could do. We went to Aarons and swam in the pool. We even had one arm races which were a lot of fun. We had Tuyet hang on to Aaron's neck to slow him down as even with only using one arm could beat everyone. Myles, Dave, and I went to the Red Robin after we left Aaron's for a birthday dessert (We so love Dave) and they actually embarassed him which is a very hard thing to do.

We will know more about our options with Myles' arm next week. After much talking with Salt Lake City, I have decided to let him go to burn camp (yikes!!). The nurse that is going on the rafting trip has promised to take him under her wing. Myles is great at reconstituting his factor and can guide her to the best veins to try. This camp is going to be so great for him as he has stopped wearing his pressure garments so talking with other teenagers about their experiences in High School will be something that he can not learn any where else. I am so excited about him going and so nervous.

Love to all

Acceptance

I layed awake most of the night pondering the true meaning of this word, Acceptance. It seems to be in the forefront of peoples lives including ours. Accepting the price of gas, the destruction of our earth, the things that we see on the six o'clock news. Is accepting life a good thing or a lazy way of not doing anything about it at all? As Myles' mother, accepting is something that I have been teaching him all of his life. Accepting the fact that he has hemophilia, accepting the fact that he has to get weekly shots, accepting the fact that he got burnt and had to go through unbelievable pain, and that he has many scars (which are very beautiful to me now), accepting that he has an absent father in his life. I try to show him that in accepting these realities it will free him up to see the wonderful things that he is. His unconditional love for all things, his humor, his generosity, how there is not a baby in the world who doesn't light up when they look into his eyes, that he can still golf. We came home from the hospital yesterday, IV's and all. He is not suppose to use his right arm for three weeks and get daily injections for a week, that is something we both can accept. Late last night I received a call from his doctor saying that he got the results of the MRI that Myles had yesterday before we left the hospital and that there is some permanent damage to his elbow joint and his arm may not ever straighten again. Acceptance, I don't think so. I have not told him of the results as I can not give my son strength unless I have it. Telling Myles that he might not be able to golf is not like all the other things that he has had to accept in his life, it will be taking a piece of his soul away. The whole time in Salt Lake City, the want to golf helped him endure. The painful physical therapy and wound care that followed was accomplished because of the want to golf again, golfing has always let him feel free of all of the other things that he has had to accept. We all have something that gives comfort to our souls, cooking, running, gardening, something that makes us feel good and takes us away from everything else on our minds. I am praying that this is not something that he has to accept, but if it is, I need to start working on my part (as his mother) now. When you don't have acceptance you will either feel despair and depression or anger, I am choosing anger right now, anger over all that my son has to accept. This will pass and I will again find strength to help Myles be the phoenix that he is and rise out of the ashes.

Back in the Hospital

Myles is in the hospital. He went in last week for an uncontrollable elbow bleed. We tried to drain the blood in the joint (tap) but it kept coming back and the procedure is terribly painful. They have him on a constant factor IV to try and get it under contol. Hopefully he will be out some time next week. He is doing fine and has no pain unless he tries to straighten his arm. We are all praying for no permanent damage (GOLF!) Our great friend Daini came by to visit us and always brings tons of candy. We are going to have a hospital room picnic tommorow for Mother's Day! Back to the hospital...........Happy Mother's Day.

Canada Geese

Myles and I had to go to St. Lukes hemophilia center today. We seem to still have a very hard time securing veins on him to treat him with factor (he had an ankle bleed) and after more than twelve times trying to find a vein I brought him to the hospital. Even they have a hard time. There is a large park by the hospital and buggies and I like to go there in search of baby Canada geese and boy did we find some. We could sit for hours just watching them as it takes all of the stress away. Myles finished his golf classes and won the award for best all around golfer! The assistant Pro who taught the class is recommending him for Varsity golf. He says that a Freshman has not been in Varsity in over five or six years. Go Bugs!!!!