reminder: be normal

i am amused by the fact that everyone views monday as the beginning. how are we ALL on the same wavelength?  imagine a time when there were no calendars or clocks and the only way to keep track of things is by totally being in tune with your mind, body and spirit. a time when you felt it was time to exercise or read or even teach someone something.

a wonderful weekend passed again. it was an overall calm one and it was extra special because i saw many loved ones. anyway, sunday night, late sunday night that is, after i got all my little people settled and snuggled with them until they drifted into their slumber, i was laying in bed doing my usual internet browsing and thinking. and with it being sunday night, i had those thoughts that i am sure many of you do.  thoughts that include, but are not limited too:

"i will get more done this week, maybe clean out the basement"
"i will exercise, in fact, i will take the whole family to the park, every night, we will burn so many calories"
"i will make cookies this week"
"i will get up earlier so i can get more done"
"i am going to get all the laundry done tomorrow, if i just devote my whole day to it, i can get it done"
"i will get more lessons done with the kids this week, maybe we could go to the library every day"

i get all these great ideas. and then with all these great ideas i realize i just need to put these things on my calendar so they will get done. 20 minutes later, i have added 15 reminders in my phone. and i was only on tuesday!

you see, i lead a very....hmmm what is the word...i dunno. my life doesn't typically compare to the lives of other mothers that have 3 kids. we just do things differently in our home i guess, i don't know why, it's just the way it is.  sooo, these reminders that i put in my phone are reminders to be "normal".

one of my reminders i scheduled was to wake up at 7 everyday because i believed that is what other "normal" people do. wake up the same time every day. and early.  the next reminder is "throw in a load of laundry". this reminder was set to go off shortly after i woke up because that seems to be what a normal stay at home mom would do.  another reminder was "lunch" and it was set to go off at noon because i figured that is what every other family does at home, eats lunch at noon.  i even put a reminder on my phone to "take walk" at 7 p.m. because that seems to be the time i see my neighbors strolling about.

we do not get up the same time every day. in fact, i don't even set an alarm because typically i have no place to be in the morning.  i don't do laundry every day. i should. but life doesn't allow me to. the life we have chosen does not always support a rigid cleaning schedule.  we do eat lunch every day. but not until we get hungry. it's sometime in between breakfast and supper, but it is rarely at noon.  my family and i are pretty active. we take walks, go for bike rides, shoot hoops in the drive way and even do some yoga and hip hop dancing together from time to time.  but we never seem to do the same sort of exercise two days in a row. it's always something different.

after setting all of my reminders in my phone i was feeling optimistic that this was going to be the week that we were a normal family. i went to bed feeling great.  monday started off good. woke up early, drank my coffee to get me going, ate lunch "on-time" and so on and so forth. my phone kept dinging as each reminder went off and i would check it off and move onto the next thing. monday night was ok, but each time my phone dinged to remind me of something else i felt more and more agitated.

we went to bed and all was well. i was thankful for the day i had, but i didn't feel complete when i went to bed. i felt out of sorts and was grumpy. i was partly grumpy because i had my day all "planned" and some events didn't go as planned.

by tuesday afternoon, i silenced my phone. the reminders had gotten the best of me. i realized all i did was set myself up for failure.i canceled all of tuesday's reminders.  tuesday was awesome. today was good.  we had a wonderful school day, we ate lunch when the kids told me they were hungry and i got laundry done. i did it when i felt like it. i did the dishes when i noticed nats. i played with the kids when i noticed they needed me. and i wrote on my blog when i felt inspired even though i know i "should be in bed" as some would say. why "should" i be in bed? who says. for me, it feels fantastic to be awake at 1 a.m. I feel like I could write a whole book right now and for crying out loud, everyone thinks we should sleep at night!

anyway, i wanted to share with you what i learned. i learned that i do things differently than my neighbor. and i learned that i really like it that way.

life is good

Hi there.  hope this blog post finds you content and well.  as always, coffee is good and i am alive.  the kids are peaches and handy manny is busy fixing things on my tv for my sons entertainment so i can scribble here.

just the thought in my head for the day...

last night in bed i was reading about syria and war. typically things i try to avoid reading because i am helpless and i find it to be disturbing.  but, for some reason, i felt the need to be brought up to pace. left with a fearful feeling in my gut, i went to bed.  as i woke up this morning and read online, there seemed to be 3 or 4 articles that i kept seeing regarding cancer, especially the rise of cancer in north america.  wait, north america...that's where i am. so i read the article. gahhh. why do i read things about a war that we cannot win and a disease that apparently our north american lifestyle is promoting?

and when i read stuff like this, i am not just concerned about the well being of me, but my children, whom i make decisions for, my husband, my whole family, my friends, YOU, yes, i am even worried about your safety and health!  and then i hear handy manny. a good samaritan, helping friends, teaching people and always providing quality work.  i look out my window, and the sparkling september sun that i talked about yesterday came back for the day to shine on my life.  i think about the lessons we will do in our homeschool today; the ones that i planned for my kids and no one told me how to do it.  i think of all this. i think of how despite what is going on around me that is bigger and scarier and out of my control, what is going on right around me is nothing less than perfect and delightful.

it is recited often that ignorance is bliss, and it is.  every day we are learning and growing, and that is important. but sometimes i wished i wouldn't have learned about syria. i wish i wouldn't have learned that my can of pepsi and my microwave are killing me. i wish all i knew was that the sun glimmers on me and my family, God loves me unconditionally and that handy manny is a cool dude.

raise your mug.  celebrating what is good in my life because i know i cannot do it all. we will do our best today. we will learn. we will eat fruit. we will use our microwave. we will trust our God. and maybe i will go buy 30 jugs of water to stash in my basement for doomsday.

Books And Movies Including Kids With Special Needs

This is going to be an ongoing post on my blog and I will update it as I find more.

Books and Movies for children that help explain disabilities and diseases in a non-scary way:

1. Handy Manny Season 3: Episode 15 "Story Hour/Long John Lopart" is about guide dogs, being blind and braille.
2. Arthur Season 13: Episode 1 "The Great Mrs. MacGrady"  is about cancer.

Fun Ideas For The First Day of Homeschool

i love september. where i live it is cold at night this time of year and in the morning it is cool and crisp, just enough to where you slip into a fleece parka and need your slippers on your bare feet so they don't freeze on the floor.  no more air conditioning or fans at full blast. windows cracked in your house and the air is perfect.  the sun seems to give off a different kind of sparkle in september as well.  taking in this phase of nature can cleanse you of any negative energy or worry, even if it is just temporary, it is very therapeutic!

our first day of homeschool was yesterday.  it was magical.  the night before the first day of school (do you got that, lol) as i was tucking the girls into bed we were talking about our first day of school.  they kids were SO excited.  just really pumped about being in a new grade and excited about everything we were going to learn together this year.  as homeschoolers would know, homeschooling is just different than public school.  but i sensed that the kids excitement was the kind that they couldn't wait for the first day of school. like it was going to be different than any other day in my house.  we do some sort of learning everyday but to them, this first day was really going to mark some milestone in their life.  i tucked them in and went and laid down in my room where my husband was fast asleep and my son was waiting on me so i could cuddle him to sleep.

once he fell asleep i was laying there realizing that this first day of school maybe meant a little something different to the kids than it did me.  to me it was a time of getting back into the groove of some of our school routines. sitting as a group reading and discussing. making more trips to the library. learning daily again instead of casually the way it was over the summer.  for them it was more.  i was starting to worry that i was going to let them down.  i wanted to have a nice plan for our first day.  so aside from my lesson plans, i got up and planned out a few more fun activities to help make the first day of homeschool exciting.

Here are the special things we did:

1. I found an "All About Me" worksheet on-line and printed one for each child.
2. We measured everyone and marked how tall they were on the wall.
3. We traced their hand prints.
4. Took pictures of each of them.

These very simple, non-original ideas were exactly what my kids were seeking.  I felt this acknowledged and celebrated their excitement.  The "All About Me" worksheets were great too as we now have a keepsake along with their height, hand print and picture!

We had a fun first day and they are still so excited to spend time in our classroom!

THKAFO's are cool

sometimes we have a splinter. sometimes we have a headache. things can happen to us that may slow us down or even force us to sit and rest.  are you sitting right now?  on your bottom?  look down at your legs.  wiggle your toes.  now, look up. thank the Lord for the gift of working legs.

now to most of us, we just move our toes and think nothing of it. some people may have read the above paragraph and were not able to follow directions. they may not be able to look at their legs because they are blind. they may not be able to look at their legs because they simply don't have any. and they may not have been able to move their feet because they are paralyzed. if my son were to read this blog, he'd be one who wouldn't have been able to follow what seems like simple and even silly directions of "move your toes".

So, my 4 year old can't stand. He is paralyzed from his waist down and has no movement or feeling in his legs.  He army crawls to get around and uses his wheelchair.  he is unable to walk or stand but he sure wishes he could.

today we are celebrating a boy who can stand. at his most recent doctor appointment he was given a prescription for his THKAFO brace (trunk, hip, knee, ankle, foot, orthosis). we took the script to an orthotist and each one of joshua's feet, legs and his entire upper body was covered in plaster  to cast to get a true mold of the shape of his body.  joshua lye their so patient doing everything the orthotist asked him to do "roll over on your side, now lay still, ok lay your arms out to the side, flatten your back..." this went on and on for almost 2 hours and joshua never complained. he is such a trooper.  so the molds were done and now it was time to pick a pattern for them.  he gave us the sheet with the different options on them. you could pick a plain solid color, soccer balls, camouflage and batman...DID YOU SAY BATMAN?  Joshua was sold. Batman, please. "I'd like a Batman brace."  Joshua had the opportunity to meet Batman when he was 3. He had an appointment one day at a children's hospital and after a long day at the hospital as we were exiting the building there stood Batman himself. The Bat mobile and the whole deal.  Some man has dedicated his life to being Batman for sick children. He visits hospitals world wide just to brighten their day and make them smile.  I think I have a crush on Batman....just sayin' !  Anyway, this is how Joshua started liking Batman. Finally, we left the  bracing office and had to wait a couple of weeks for them to be made.

in these coming weeks, we discussed often with Joshua, as a family, that he was getting new stand up braces and how special this was! we were encouraging him and getting him mentally prepared for the new part of his life. wearing a brace. being big and tall. learning new things at physical therapy that we can do in a brace. he was pumped.

finally the day came. we went to the appointment and were sitting in the waiting room.  They called our name and there his orthotist stood with these huge stand up braces. i thought to myself, oh no-those are not right. those are way too big.  i was feeling worried.  thank goodness, i was wrong. we laid joshua in them, got them all strapped and secured and he fit them like a glove.  we put him upright and for the first time I saw my little man big and tall. proud. he is so big. he is always either laying on the ground or sitting in a wheelchair and i never knew he was so tall. what a neat thing. joshua was grinning from ear to ear.

after a few minor modifications we were all set to leave. went home and wore stand up braces all evening.  he was making a sound i had never heard before.  it was a sound full of joy. he was so excited to be up. he could see and touch the top of our bar stools. he could stand up and lean on a chair. we opened the refrigerator for him and for the first time, he saw the top shelf of the fridge.  he kept making the noise. almost like an excited moan or squeal. it's indescribable.  his sisters gathered round, carrying him from spot to spot in his braces. we took him outside, let him stand up at the push mower. then the noise came again. it was almost the noise that an excited child or baby would make if they could not speak.  his big sissy let him stand on a ladder,  and shoot a hoop in the basketball hoop.  i held his hands, like a mother of a 1 year old learning to walk holds her child's hands. i did this for the first time. he was looking up at me, so proud.  i sat down at a chair in the garage and instead of him tugging at my ankles to get my attention, he stood with his sweet little boy hands on my knees. we were almost at the same eye level now.

what a special day. we sat outside drinking coffee and letting joshua explore his new world until well after dark. and suddenly, neighbors were appearing for varying reasons in our driveway. we never have this much company or visiting neighbors. it's like the neighborhood could feel our excitement and didn't want to miss it. God knew we were celebrating, he must've spread the word.  as neighbors would stop for some random reason, they would look at joshua, who they normally see wheeling up and down the side walk in a wheelchair, and just smile and celebrate with him.  it felt like one of those bible stories where people in the village hear of the good news and want to be apart of it and witness it.
these strangers were so kind and excited for joshua.  told him he was a big boy.

this is the best i could do putting our experience into words.  it's really something that can't be retold.  i am so thankful for this day, his sweet sisters and all of joshua's fan club.

home schooling

it's sunny and friday. couldn't ask for much more! still in coffee mode and it tastes quite nice.  we start our 3rd year inn homeschooling this year and i feel feeling more than ready. the kids and i are so excited!

i have done traditional homeschooling, an online school, 1 year of public school and this year, in my ongoing experiment we will continue with a traditional homeschooling experience with a few variances.  this year, instead of ordering the costly curriculum that can be mundane and not always what the kids are interested in, i am doing things a bit different. we do not do "school" at home. what i mean by that is we do not try to make our home look like what a bricks and mortar school looks like! we don't start with everyone at their desks with pencils sharpened and mouths sealed and do a worksheet then take a break. we used to, kind of. but more and more i see the natural desire of wanting to learn dwindling in them with this learning style. instead, we plan together, learn while we eat get lost in an unplanned project etc. we are free. there are a few things i like to see accomplished each week, but nothing so uptight that we all hate it. home education is fun. it's unique. and no two families do it the same!

over the summer we took advantage of free learning. by this i mean, the science experiments we see in a magazine that we never get to because we have too rigid of a curriculum that there is no time or energy to do anything extra. this year, as we find ourselves interested in topics, we will elaborate on them.  utilize the library for crying out loud! hoping to do at least one library day for research.

i asked the kids what they would like to learn this year.  have your public school teachers ever sent you a letter in the middle of the summer and simply ask what your child's interests are, and then acted on that by teaching them more about those topics?  just curious. anyway, the kids made lists and their lists are growing and growing every day!  everything from learning how to make a TV commercial to sound waves and sign language.  they are equally interested in other cultures so we will continue our unit study around the world incorporating food from other cultures, clothes from other cultures and information on other cultures around the world.

i am considering subscribing to our local newspaper for just 2 or 3 months and we will do a current events course. it is important to me for my kids to know that there are other ways to find information than just google. but, we do love google!

one of my husband and i's favorite songs is "we didn't start the fire" by billy joel.  you may have heard of this.  as we have listened to it over the years, our kids too have grown to love rocking out to this song. it's catchy and talks of so much history in the lyrics. i am working on writing an age apprpriate curriculum to this family favorite song, so that should be a fun study!  here are the lyrics:


"We Didn't Start The Fire"

Harry Truman, Doris Day, Red China, Johnny Ray
South Pacific, Walter Winchell, Joe DiMaggio
Joe McCarthy, Richard Nixon, Studebaker, Television
North Korea, South Korea, Marilyn Monroe

Rosenberg's H-Bomb, Sugar Ray, Panmunjom
Brando, The King And I, and The Catcher In The Rye
Eisenhower, Vaccine, England's got a new queen
Marciano, Liberace, Santayana goodbye

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No we didn't light it
But we tried to fight it

Joseph Stalin, Malenkov, Nasser and Prokofiev
Rockefeller, Campanella, Communist Bloc
Roy Cohn, Juan Peron, Toscanini, Dacron
Dien Bien Phu Falls, Rock Around the Clock
Einstein, James Dean, Brooklyn's got a winning team
Davy Crockett, Peter Pan, Elvis Presley, Disneyland
Bardot, Budapest, Alabama, Khrushchev
Princess Grace, Peyton Place, Trouble in the Suez

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No we didn't light it
But we tried to fight it

Little Rock, Pasternak, Mickey Mantle, Kerouac
Sputnik, Chou En-Lai, Bridge On The River Kwai
Lebanon, Charles de Gaulle, California baseball
Starkweather Homicide, Children of Thalidomide...

Buddy Holly, Ben-Hur, Space Monkey, Mafia
Hula Hoops, Castro, Edsel is a no-go
U2, Syngman Rhee, payola and Kennedy
Chubby Checker, Psycho, Belgians in the Congo

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No we didn't light it
But we tried to fight it

Hemingway, Eichmann, Stranger in a Strange Land
Dylan, Berlin, Bay of Pigs invasion
Lawrence of Arabia, British Beatlemania
Ole Miss, John Glenn, Liston beats Patterson

Pope Paul, Malcolm X, British Politician sex
J.F.K. blown away, what else do I have to say

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No we didn't light it
But we tried to fight it

Birth control, Ho Chi Minh, Richard Nixon back again
Moonshot, Woodstock, Watergate, punk rock
Begin, Reagan, Palestine, Terror on the airline
Ayatollah's in Iran, Russians in Afghanistan
Wheel of Fortune, Sally Ride, heavy metal, suicide
Foreign debts, homeless Vets, AIDS, Crack, Bernie Goetz
Hypodermics on the shore, China's under martial law
Rock and Roll, cola wars, I can't take it anymore

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
But when we are gone
It will still burn on and on and on and on
And on and on and on and on...

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No we didn't light it
But we tried to fight it

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No, we didn't light it
But we tried to fight it

We didn't start the fire
It was always burning
Since the world's been turning
We didn't start the fire
No, we didn't light it
But we tried to fight it

i am sure we will continue with learning to make more casseroles, how to be polite, loving, caring and all of the great, wonderful things. we will interact with our neighbors, lend a helping hand, and pray together. we will visit our grandparents and learn about them.  we will continue to learn how to maintain a car and a home. we will learn about life.

as cool, interesting topics and studies come up, i will gather facts and worksheets and games on them, plan field trips and really just learn all that we can about it!

i am writing my own lesson plans, and my own curriculum!  there is so much to learn and i will not buy into to the expensive curriculum! i found a free math course online, too!  i am pumped about that!  our little writers will continue to write and illustrate books and read novels at the book club my daughter started with her friends. we will continue to have play dates with our favorite homeschooling familes and attend field trips with the local home school group when we want :)

my dear friend told us about zoo school at the local zoo so we will be attending zoo school as well!

and this doesn't include our extra curricula and music!

see, there is so much to do and learn! this is just a fraction of what we will touch on this year.

if you are a first time homeschooler, an online school or curriculum can be helpful to get you started. but when you are ready to evolve, spread your wings and fly!  include the kids in planning their education; it only makes sense!

the power of human milk

yup, here i go again...

i have a special little guy in my life, my son who has spina bifida. i typically do not introduce him as my son who has spina bifida, but in this particular story, it's necessary to understand this about him. he just turned 4 this year.  as you may or may not know, i chose breastmilk as my form of nutrition for all of my kids.  i also have allowed them to nurse until their little hearts (and tummies) were content.  for my first child it was a year and a half and she was ready; she weaned from the breast.  for my second it was just shy of two years old before she chose to not come back for more of mommies milk. my son, however, over the course of his life, showed little to no interest in weaning from the breast.

now, of course, he would go in spells. nursed like a champ for a solid year and would get distracted and too busy by the world around him to nurse at times. by the time he was 2, he would nurse when he wanted, was vocal about it saying "nurse, nurse" when it was time and at times even got demanding.  we got many gawks and questions when people realized he could talk and still nursed. it's was OK though. we continued.  we continued because i knew the power of it.  i had seen my milk heal surgery wounds. i had seen him surpass expectations of 2 week hospital stay per doctors orders that turned into only 1 week stays because he was doing so well.  i had seen my milk fight off colds, flu and fevers. i had seen my milk calm him when repeated IV pokes were more than he could handle and he found peace and comfort at my breast. i can't change that he has spina bifida or go through his tough times for him, but i can nurse him, and that helps me cope.

his 3rd birthday came and went and he was happily nursing.  people had the confidence and thought they had the right to look right at him and tell him he was "too old" and that "you don't need that anymore".  breastfeeding, a natural and essential way to nurture a child, became something we only did in private.  he would cry and get nervous and ask if people will laugh at him if he nurses.  shame on the world. shame on the world for having enough power to make an innocent child feel badly. we would nurse alone.  mostly at night.  human milk was still keeping him healthy.

my son has many food allergies and proper nutrition has always been a concern of mine.  he also has battled texture aversions and an increased gag reflex since he started solid foods. there was about a year in his life where he threw up every day. sometimes at every meal.  he always kept my milk down though. that was the only piece of mind i had. thankfully, i could give him my milk. it kept him hydrated. it kept him growing! i know what helplessness feels like, and it doesn't feel good. me nursing him became essential.  became vital.

my son is catheterized due to incontinence from the his spina bifida.  from the day he was born, he was put on a cathing schedule.  people who are catheterized are at higher risk for urinary tract infections.  his urologist insisted he be on an antibiotic. when i asked for how long they said "well, likely for his whole life"!  what?  i don't even have to be an MD to know that that can't be good for anyone, and i certainly wasn't going to have that for my son.  when i discussed human milk as a preventative method for infections, it was not taken seriously.  they gave human milk no credit.  so i smiled and nodded, took the prescription home with me with no intentions on getting it filled.  smelly urine and fever are signs of infection.  over the past 4 years if any of these symptoms appeared i would nurse like crazy, sometimes offering milk every hour and within 24 hours, all symptoms were gone and we were back to full health.

my son has seizures. no one knows why yet. no surprise. but everyone is interested in medicating him rather than getting to the root of the problem. blah. this sort of care sucks the life right outta me.

my sons 4th birthday came and went and he sat right up on my lap and gulped up his breastmilk like a big boy. by this point, we were at the "don't offer it, but don't refuse it" point in our nursing journey. i knew how good it was for him, but i was starting to lean towards weaning. i don't really know why, but my instincts were pointing towards weaning.  days would go by and he wouldn't nurse and my heart would ache but yet i was so proud of us. we made it four years. i wondered if we were done. and then he would ask to nurse at bed.  eventually he started to tell me there was no milk. he thought it was stuck. he had seen me pump a handful of times and he suggested we pump it out so it wasn't stuck.  bless his heart. he is a "fix-it" man at heart. always wants to fix things. i described to him in the gentlest way possible that i thought it was just gone because he was growing so big and strong and that he didn't need it anymore maybe.  we always referred to my milk as something that made him, smart, strong and healthy.  a couple of months went by with no milk flowing and only suckling once every 3-5 days.

OK, TRUE STORY, LISTEN UP:

my son had symptoms of a mild seizure at age 1 and a similar occurrence of spacing out and turning blue in color at age 2. these were pinpointed as seizures but had no reason why but since they were mild and a year apart, they were ok with no medication.  within the last couple of months, since my milk has dried up, my son suffered 2 full fledged body convulsions, 5 minute seizures. totally non responsive.  coincidence? maybe. but i doubt it. my milk has been his medication for the seizures. they have kept them stable. no more milk = full blown seizures.

as i mentioned above, signs of a UTI are fever, foul smelling urine etc.  when those symptoms would arise i would increase medication aka breastmilk and life was good.  last week my son had all the symptoms and i had no defense. i was helpless. i took him to the doc and he tested positive for UTI and was given 2 different antibiotics to kill the bacteria. coincidence? maybe. but i doubt it. my milk acted as his medicine. and now my special, miraculous, liquid gold is gone.  my super healing power, organic natural medicine...gone.

so here are just a few of my personal miracles with breastmilk.  if you have milk, like right now, in your boobs or in your freezer, guard it with your life.  it's special. it does big things.  don't let anyone tell you different. you, truly, as a lactating lady, have a super power and it is to heal. not just heal an infant with a runny nose. bigger than that. to heal the sick, the poor and the hungry.

our nursing journey together was indescribable. we have something that no one else has. our days are over.  and i am at peace with what we achieved and where we left off. one of the last special comments he said to me after nursing one night as his big brown eyes stared into mine was "the milk is so good".