That dang cancer and words we should all take to heart.

              I did not write this. This is an email I received today from an angel in my life who has been fighting cancer for a long time. Not to long ago she told us all she was no longer going to spend her days sick and miserable, but living the rest of her days taking life in the best way she could. I wanted to share this because we take for granted the life we have everyday. Here are words from someone who is truly taking in life on a daily basis because she knows her time is short. Read it, feel it, and believe me every word is a lesson. We all have our battles in the world and if we are lucky we can have this view on life while we tackle them. My love to a wise and amazing women!

Dear friends, support group, Trusted confidants and THOSE OF YOU WHO DON'T
Really give a damn but put up with my updates anyhow,

Over the last four months, life has changed once more. I'm leading a pretty
amazing life for someone who was given six months to live in September.
However, I did find out that is more an arbitrary time frame used to get me
in hospice care as soon as possible and not a true time frame. No one
really knows how long I will be around to irritate you all.

I have the best friends and my siblings have been coming through for me
these last couple of months. A mild fall with beautiful golden colors made
sitting in my nest an amazing visual feast. Life has been good.

I've had lots of time to think and consider the great mysteries of life.
I've decided there are no answers to any of life's questions and that's
where faith comes in. I have faith that the cardinal will lose his
brilliant red color, the gold finch will turn a drab olive brown, cold
weather is on its way, and that if we look for it, we are constantly
surrounded by the most amazing world.

I also believe that no matter how hard we try we can never please all of the
people all the time (however, that is still under advisement by a few poorly
informed types), we can please some of the people some of the time, and we
can please some of the people NEVER!!!! That one I know for a fact. And
so,my new outlook is that the only person we can really "please" is ourself.
Trying to please anyone else is pretty futile!

The rewards of truly loving and supporting our friends are astronomical!
So,for those of you who have decided I am an old woman without a lick of
sense, just pretend that I got into my Long Island Ice tea and that Madeline
and I are having a limitless party. (It's Lue's fault! That lady knows her
wine!)

For those of you who really care, I can't wait to see you again.

Meanwhile, my heart goes out to my sister who lost her husband on Monday but
is still unbelievably blessed with two sons, two daughters-in-law and three
grandchildren. Would that we were all so blessed to be surrounded by love
in all those really difficult times.

Meanwhile,remember, cancer isn't all bad! I can eat whatever I want,
whenever I want even though I can't taste much. But for those of you who
live in MN or own a plane, there is a bakery that moved down from
heaven,literally and set up shop in Plymouth with a second shop in Anoka
called Truffles and Tortes. I think I' walk barefoot through a blizzard to
get one of their raspberry tortes. Now, there's something worth dying for!
Of course, that is next to my sister-in-law's rice pudding, my sister's
"fresh lefse,". Brandy's caramel pecan rolls (which I'm told are as good as
my mother's ( a fact she still has to prove to me), all of Harriet's
cookies, which are being known in a five state area, my brother's jams and
butter bridle candy, Bruce's pearl onion dish, heaven is just a mouthful
away. Of course if you are blessed to life in fish and shellfish country,
you are already too blessed for your own good! Dungeness crab, halibut,
smoked salmon - you guys got to learn to share the wealth! You are already
living in heaven, after all!

Arlo, Mikey,Tasha, Widget continue to thrive and survive. We are all growing
older but I am so glad I'm not living with a thirty year old hunk of burning
love. I couldn't keep up!

We are doing great here! I got a high-class purple walker which doubles as
a chair on occasion. I'm trying to find the wooden cane Arlo made for his
Mother, and maybe at some point, I might need a wheel chair and all those
embarrassing bathroom accouterments.

Meanwhile, know that Arlo and I laugh and enjoy every positive moment we
are given,

There is one favor you can do for me - give one another a lot of love,
forget about past mistakes once you've learned whatever lesson you BOTH
needed to learn, and try your best to treat others the way you want to be
treated. Old ladies get to say all this stuff because when everything is
said and done, " all we need is love (and a big mouth)!"
(cue Beatles)

Love
Jeanette

P.S. I don't know if I'll be sending out another update, but even if I do,
you do NOT HAVE TO READ THEM. God willing and the creek don't rise, I might
even have something interesting to write about sometime in the near future!

Reply

Vice grip on a little airplane.....and a show of emotions

                 Sitting here tired as ever from two very long days but I don’t want you to think I am complaining because I am also sitting here trying to digest all of the fresh caught king crab we just devoured. I earned this feeling and it’s a good one!

                Yesterday Phillip and I left for the Spokane airport to pick up dad. He has been away for work for the last three months and it’s been this way for a while now. We stay at the same hotel each time so Phillip does recognize now what this hotel means and it means daddy is going to be here. He also knows the airport and loves to walk around taking everything in. Luckily dad usually comes in late at night so there is lots of room to run and wander around. This flight happened to be coming in at midnight and Phillip would not and could not sleep. He knew what was coming and refused to miss it.

                When a toddler is clearly excited for his dads return and knows what all of these signals mean you would expect a certain reaction from him when the time finally came. Not the case with Phillip at all. He is excited and he is happy but at the same time the transition hits him hard and he can pull back a bit to take it in slowly. Then all of sudden or maybe a day later…he has finally taken it all in and completely at ease.

                This trip gave me some clear understanding of what is really going on with him as far as how he feels. Autism makes this really hard to figure out sometimes because he pulls back. That can be mistaken for not feeling and I know that is not the case or even close to it.

                Daddy snuck up behind Phillip this time and put a toy airplane in front of him. Phillip has an intense interest in flight and loves airplanes so dad wanted to surprise him with a new plane to play with. When the airplane came into play nothing else mattered and it was a long slow walk across the airport with Phillip creating propeller sounds and practicing his flight patterns. It seemed as though dads arrival went unnoticed but the vice grip Phillip had on this plane was one I have never seen him do with any toy. He clutched that plane with both hands and held it to his chest. He even fell asleep with that little plane clutched in his hands holding it like it was the last toy plane on earth. Most of today he had to have that plane in full view or in his hand. Even getting him to let go of it to take his coat on and off with a struggle. He took that plane in the bath with him and he has not allowed a new bath toy in over a year. He throws them out no matter what.

                Phillip has a few toy airplanes he loves and we take them with us on a long trip but he never plays with them. There is way too much going on the world to break focus on all the things he is taking in. when I hear autism described as lack of emotion it always makes me sad to think people take this description seriously. What I see is not a lack but a way of showing emotion differently than what we might be used to from kids and adults.  

                The death grip with both hands on that little plane was not a love for a new toy at all. New toys are really no big deal to him. It was a strong grip on how he felt about seeing daddy again and this was the only way he could get that feeling out. It’s been a full day now and we are home with dad. The plane has joined the other planes on the coffee table and Phillip is playing and laughing with his dad. The emotion broke through and is coming at dad full force now.

                Flight patterns and a two fisted grip on a toy has turned into tickles, laughs, and cuddles.  The emotion has broken through.             

The weaves of life....can you think of any?

                Life weaves together in such a mind blowing way and when I sit back and think about all of the changes and people I have been given in life it’s almost overwhelming. Lack of resources for our son is taking us back to where I grew up and having family support in daily life. For that I am grateful and who knows if that change would have come without the diagnosis. I like to think it would but the diagnosis cleared the road to home so to speak.

                Sharing an interesting story today that proves just how life weaves together in such a crazy way. I was adopted as an infant. From that the Brown family found me and that alone proves God is in my life. The gift of being given up for adoption by my mother and the gift of who found me was an amazing weave from the start. At twenty years old I searched for my biological family and found a group of equally amazing people. My aunts, my older brother and a little sister became an even more awesome addition to my life. Including all of the people that come with them and moving home is going to give us all a chance to have them in our lives as they should be.

                I met Phillips father four years ago, ten years after meeting my biological family, in Montana without knowing he had grown up in the same area as my biological brother. I learned of that quickly and asked him he knew my brother but it was a big area, in another state, and he couldn’t recall. Considering the odds of that I didn’t ask again but one day my brother called my house and Phillips dad answered the phone. We learned not only did they know each other but they had in fact been friends. Phillips dad had gone by a different last name at the time and it had been years, so the connection took a while to figure out.

                Simple break down, baby gets adopted. Grows up to find her biological family and miles away ends up having a child with her biological brother’s old friend? The odds of that happening are slim to none and the weave of life on that one is just amazing.

                Now we are getting ready to leave a town I never expected to live in to begin with, back home which I never expected to move back to in life. I gained a larger family while living here and made connections with people I will hold onto for the rest of my life. That connection was made by way of buying a house and an instant connection with the realtor. An amazing woman who I cherish daily and will stay connected to my entire life as she has become family to me. In that connection I found a house next a couple who I also consider family and also will stay in contact with through life. Both connections have been more than supportive ever since our autism journey began and our family in general. Life would not be the same if they hadn’t found a way into it, and the way in was only through chance.

                All of these connections weaved together in life and each one adding to a life story that wouldn’t be complete or even possible without them. It’s no secret I over think, but how everything weaves together and the connections in life are sometimes just to amazing to ignore. Over think your life just a bit and I can imagine you will find some weaves to important to ignore. Through bad and good it’s there and I say Thank God for that. Even if you don’t believe in God, you will still find the weave if you pay attention.

               

Put that damn phone away and help!

                 Here is a picture that came up this morning on Facebook. There is no autism in this other than this baby is not autistic or would have been screaming like crazy from sensory overload. There is a human nature lesson in this.

                When you first look at it your quick reaction is, what a terrible mother. Why would anyone put their baby on that nasty floor? That was my reaction at first. Then I began to think more and more about all the different elements involved that aren’t just about a baby on the floor.  I began to feel bad for this woman because of those elements you won’t think about at first glance.

                First thing I thought about was she felt putting the baby on that nasty floor was the only option. Something kept her from asking people to help her. Maybe she felt it would make her a burden to others or maybe she just really felt putting the baby on the ground was no big deal. The only way to know would be to ask her personally and unfortunately I can’t, but I sure would like to. Then we have the women standing nearby with her back turned. Did she see this happening and if she did how did she react? Again maybe she didn’t notice although this would be a hard thing to not see happening.  The woman standing nearby not helping gives a little more clarity to why mom didn’t ask if you think about it. If people see this happening and then don’t step up why would someone feel people are kind enough in the first place to lend a hand.

                The picture alone should give us a mountain of information about society. When the picture was posted all of the comments were aimed completely at the mom but there is so much more to aim at. There is women nearby and the person who took out there phone to take the picture and blast it on facebook.  I don’t use my phone to take pictures of shocking things and I especially wouldn’t use it at this moment. My phone is used to call people not humiliate them. In fact the time spent taking this picture could have been spent walking over and offering to help. So yes we can take aim at this woman for putting her baby on a gross germ infested floor but let’s not forget what our society has become. So completely wrapped up in documenting a moment with a cell phone the ability to pull up some empathy is gone. I can’t help but think that in some way this contributed to how a mother would rather put a baby on the ground than ask for some kindness of others in the first place.

                Like I said maybe this was just her way, but how did we all get this way? I have had some difficult moments with my son in public. Rarely do people show empathy when this happens. If they do it’s a little old lady who hasn’t allowed technology to rip out her soul. Is it just a matter of time before a picture of a struggle of my own ends up blasted on the internet? Maybe, because some people do see an autism moment as bad parenting.

                People need to stop preying on each other with cameras and start stepping up with kindness. Or have we gotten so far in to this habit, kindness has been smothered out of us. I like to think there is still hope for the human race but in order for that to become a reality we have a whole lot of work to do on ourselves and our daily interaction with others.

                The title attatched to the picture this morning was "Get that damn baby off the floor!" but I think what could have been added to that was, Put that damn phone away and help!

               

                 

We can all learn from total lack of selfish desire.

             Birthdays are such a great event! We all have one and we all love it, to a point anyway. I am more into ignoring mine than celebrating or making a fuss about it but secretly I do like to feel special when my birthday rolls around. Kid’s birthdays are nearly the greatest day of the year. Three holidays in a kids mind are stand out awesome and those would be Christmas, Halloween, and the birthday. The one day everyone is celebrating you.  There are balloons, cake, ice cream, a party, favorite dinner, friends, and those ever amazing presents screaming your name and your name only.  Kids wonder if they have a present in there they have been begging for. Maybe a surprise present mom and dad said they would never buy. It’s just all around one of the greatest days of the year to a child.

                For my son it’s an entirely different story and as strong as I aim to be all three of these holidays can get me a down a bit. Yesterday was in fact Phillips third birthday and to be totally honest he didn’t recognize it. I actually don’t even know if he understands he is three years old. I like to think he does and I like to think he knew it was his day but all of the clues of the day pointed to he had no idea what was going on. He liked his balloons because they float that’s cool and he liked some of that nasty chocolate cake. I unwrapped his presents and he had almost no interest in the unwrapping process. It took him some time to even acknowledge the gifts and play with them. New things are so easily accepted. A hard thing for others to understand when a gift is presented to him, no matter how awesome it may be, it’s still new and out of the ordinary. I end up pushing it on him so the person who gave it to him feels like he likes it. A habit I am getting myself out of because it’s an issue that is only based on my concern and no one else’s.

                Even though he lacks the ability to get excited about his own birthday and it gets me down a bit there is the other side to it I appreciate in a huge way. He is a child who doesn’t require things to be happy. He doesn’t demand anything as far as material objects and even though he shows no interest right away he also doesn’t show disappointment if something isn’t what he thought it would be. Sometimes a kid gets a gift they don’t like and they let it be known but I don’t see that in him either. It’s all based on interest. There is no show if emotion regarding selfish desire. To me that is one of the inspiring things about him. Of course I want him to be excited about the holidays but there so much to learn from someone who isn’t capable of falling into the selfish desires of wanting to many things, even if he didn’t choose to be this way it’s something we all wish we could grasp one way or another. The ability to be happy with what you have and the only desire that ails you is to communicate how you feel. What if we all had just a little bit more of this in ourselves?

Hypersensitive immune system and autism and we are 3 today!

http://www.autismspeaks.org/science/science-news/study-finds-children-autism-have-more-active-adaptive-immune-system

http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-multi.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898160/

              Today is Phillips third birthday and we will be spending it trying to gain our strength back from two days of an antibiotic his little body didn’t like. I have learned so much in the past three years and even now I wake up every day with a new lesson coming my way.  I can’t avoid it, he won’t let me and I say that with gratitude and humor at the same time. We aren’t doing anything today but resting and waiting to have a party for him when dad comes home in a week. I can’t let the day go by with nothing so he does have some presents and the old inflatable birthday cake I have used for everyone for years is up and running in the living room.

                I was up last night until 3am researching things I hadn’t come across yet on this autism journey. It seems just when my mind is completely made up in regard to the difference something jumps up and tells me to read more, because I am missing something. I have always stuck very close to my genetic difference idea and even after hours of reading last night I still believe in the genetics of autism. Even when it comes to genetics we do know carrying a gene for something doesn’t always mean it’s going to be an active one. Then I begin to think about what pulled the trigger as you will hear so many scientists say. I haven’t been a huge fan of Autism Speaks because of all the money raised for research and very little being put into resource but being humbled is an important lesson in life we all need to embrace from time to time.

                My son’s immune system is exceptional and rarely is he affected by sickness or any physical problems that could be associated with autism. It has all been neurological to this point which convinced me this is just a genetic difference. This weekend when he was given his first antibiotic ever for a bladder infection he actually did not have I was paying attention. His reaction to the antibiotic was a difficult one from throwing up, fever, chills, swollen lips, swollen throat, and what appeared to be pain in his stomach. The reaction began on the morning of day three and he had taken only two days of this medicine. Why is it a child with an impeccable immune system would be affected so horribly? A foreign substance in his body that kicked his immune system into overdrive and overdrive is what causes the body to go to war with what it doesn’t recognize. A hypersensitive immune reaction and the first time I have witnessed this happen to him, I think.

                We focus so much on genetics and vaccines or at least the general public does, I am now leaning towards genetics and a hypersensitive immune system which also would involve how his body can or can’t process a vaccine. Not one certain vaccine like so many people blame, but all of them. The vaccine process begins at birth and during the first two years of life we are given a strict timeline to get them. For good reason and I would never say not to get vaccines because it is needed to a certain point. Here is where my mind has evolved to in the last couple of days and researching until three am last night. If a child carries the autism gene and is born with a hypersensitive immune system the process of his body going to war with foreign antibodies could begin from day one. Each time receiving a vaccine could certainly have an effect. This would not be vaccines causing autism; this would be autism losing a battle with the process of vaccines. Or for that matter any foreign substance the immune system goes into overdrive to get rid of. If the medical community could find a safe way to test an immune system from birth before giving anything that may kick it in to overdrive, could it possibly keep the safety on that autism trigger?

                Once again this journey has made me change direction in my thinking but not one way or the other, just a new road that seems to make the most sense to me. In fact I am surprised my children didn’t wake up to papers spread all over the house with crazy random facts written all over the walls this morning from my intense desire to learn more last night and having the evidence sleeping peacefully in bed. As much I enjoy being humbled, I really don’t like changing my mind unless I feel 99% confident in why. When it comes to autism 99% percent confidence is kind of a funny statement to me no matter how much I research.  One thing autism has taught me is that I will change my mind to many times to count and I have to be able to accept it.

                At this very moment I have an adorable birthday boy sitting next me with a sour look on his face. He has managed one piece of toast and three big swigs of water to begin what may turn into a birthday to remember. No matter how much I learn, change my mind, and research he still just needs his mama to tell him it’s all going to be ok. I don’t know about you but even I need that to this day in my adult life and the journey continues.

 

Seems like the day will never end, to bad it will!

               Yesterday was one of those days that just seemed like bed couldn’t come soon enough. Beginning with an early doctor’s appointment which the world around me refused to let us get to on time. After trying to wrangle some pee in a cup for testing then only finding a cup to put it in that I had little faith in and stuffing it in my pocket, we met the world’s longest slow moving train on the tracks to get to the highway. Once we reached the highway we met construction for nearly the entire seventeen miles to the clinic. We made it just in time to hold the appointment. The clinic has a great play area with toys that are perfect for a child who is on the spectrum. This gave him just enough to time to get totally focused on the toys before they called his name.  

                I made the mistake of bringing my coffee mug in with me so when his name was called I had to break his focus and wrestle him through the door. At this point I had a child that is all arms and legs putting up a fight from a too quick transition, a room full of spectators, clinging to a coffee mug that should have stayed in the van, and an questionably sealed cup of pee in my pocket.  At this point I gave the coffee mug to the nurse to carry. Since Phillip was already in battle mode I knew the rest of the appt would not go well. The nurse tried to weigh him and tried to check his vitals but we are now at the point touch is a problem. He was still focused on those fabulous toys I just yanked him away from.

                I offered the nurse the pee I had in my pocket for the UTI test and giggled when she put on a rubber glove before I handed it to her. Yes it’s gross but the journey the pee made without fail was a good sign she was safe.  In the end we ended up with our first prescription that is supposed to be given for seven days. The pharmacist said to me, it doesn’t taste that bad, as though it shouldn’t be a problem. Again I was given a giggle because unless it tastes exactly like tapioca pudding it’s not going to go down well ,if it goes down at all. We are on day two and I am going to have to call Monday for a different option because the medicine does in fact not taste like tapioca pudding.

                Once we finally made it home it was a constant and long day of Phillip wanting to take a bath as he figured out that was the only way to get relief from a painful UTI. The challenge with that is, when my son isn’t feeling his best some of those spectrum side effects shine through such as turning the bath water off. This is an old problem we conquered long ago but it came back full force. Five baths total for the day and each one we had complete upset when the water was shut off. One of which he became so out of control I had to remove him from the bathroom and put him in his room to calm down. To explain this challenge it has to do with sound of the water flowing. It runs long enough for him to get comfortable and then when I shut it down it is a frustrating fast change. If he feels unhealthy these fast changes are much harder for him to process. We had a full day of these challenges and mom was exhausted.

                By ten o’clock I was literally begging my son in my mind to pass out for the night and at ten thirty my silent begging paid off. I was craving my pillow more than a heroin addict craves a fix but there was my oldest son sitting on the couch watching movies. One thing I love is just a little free time to sit and talk with my older kids and what I love was staring me right in the face no matter how bad I wanted to go to bed. I sat up with my son watching an old movie, showing him some old comedy and having some good laughs. Soon it was midnight and I just couldn’t stay up any longer but the longest day ever ended perfectly. In fact I would say I am entirely grateful the day was as long as it was because just sitting around with my son seeing his smile and hearing him laugh was more than worth the time added to the day.

                A difficult exhausting day that ended with an hour and half of exactly what I needed to feel gratitude for endless day, and by midnight I felt as though the day just wasn’t long enough.