Clearly You Are Not Disabled?

YOU ARE CLEARLY NOT DISABLED SHAME ON YOU

from an article here 

Please read this post as written with a tone not of anger but of sharing. I read the above article and it touched me because I am handicapped and I have "looked" handicapped but right now do not.

I want the reader to kindly think. Please put yourself in the shoes of someone who has one of these diseases. That someone is so unkind or maybe has never considered how many different diseases do not show on the outside is understandable but still amazing to me.
Can you SEE......

Cancer?

Arthritis ?
Juvenile Arthritis?
HLA-B27+ Spondylarthropathy?

Kidney Disease?

Congenital Heart Disease?

Epilepsy (not all seizures show)?

Ehlers-Danlos Syndrome?

Marfans Syndrome?

Pseudo-Tumor Cerebri?

Chiari Malformation?
Mastocytosis?

Lupus?

Mitochondrial Disease?
Gastroparesis (with a feeding tube)?

3 Beta-Keto-Thiolase Deficiency?

Dysautonomia?

Tethered Spinal Cord?

I could go on and on and on with literally hundreds if not thousands of diseases you CANNOT SEE but make life very difficult. Most readers would not want to know how life would be to live intimately with the above diseases. We live with almost ALL of them at our house.

I do realize there are those who abuse the system. However, the vast majority of those who obtain handicap privileges do so legally. When you see someone who "looks fine" get out of a vehicle with a handicap placard or plate and go into a store, it may mean they are having a good day. We have to stay home when we are not doing well so it stands to reason you will not see us that way.  It may mean their meds are working that day or week. It may mean the surgery they had has worked and they are recovering. It's impossible to know what medical situation they are in.

Another factor that I, my children and many of the folks with chronic disease work really, really hard at is.....

 Looking and acting normal when we are not.

For me it may be for the short time when I leave my home to shop or when I have guests. It may be when I go for a BBQ at someone's home or a birthday party. Whatever it is......

I desperately want to look like you 
I want to socialize like you
I don't want to look sick
I don't want to act sick
 I don't want to be sick

 Being sick I have no control over and have accepted as a gift from God and I do not resent it or pout about it or make others miserable because of it. But I DO feel sad when I get looks as I get out of my car with my handicap placard and I don't "look" handicapped (right now). I know what folks are thinking and I have to overcome the thoughts that I don't "deserve" to have that space.

I'm not trying to be on a soapbox. I am really trying to tell you that we are a family that appears perfectly normal on the outside most of the time. We have many rare debilitating, progressive, incurable diseases that cause pain and disability. We live in hospitals, doctor's offices, labs, pharmacies and fly across country for care in several states. We are in studies all over the U.S. We have been in the New England Journal of Medicine and drugs are being developed that may help your family because of that study. We are weird enough that the study was on our family only! It was on the front of the Wall Street Journal and on every science journal online.We are three headed turtles out of nuclear waste dump at this point and we do not complain, we laugh...a lot.

When our twins both had brain/spine surgeries in the winter and had to wear cervical collars so their "disabilities" were obvious to the people who always stare when we park I didn't have to think about it. But when they thankfully got to take them off last month my radar was back and I was instantly aware of the looks again. I know, I know it shouldn't matter. But it does. I am a rule follower and I do not want people to think I'm taking advantage. But for myself, 5 brain surgeries, a million diseases, a  stroke, seizures, a feeding tube that follows me everywhere but is fairly invisible and a bunch of other garbage later, don't even say to my husband I don't deserve to park there.....

When I was in a wheelchair it wasn't an issue. Now that I am so blessed to be out of that thing, it's now an issue. Geez.

Please allow us to park a bit closer to make our lives a little easier. Please allow anyone you see that privilege because you just don't know what they suffer. There are so many diseases that just don't show and so many sufferers that carry their diseases so well that suffer at home where you don't see because they want to look just like you.

Maybe, next time the note could say....

~Blessings~
Lisa

The lovely gal who wrote that piece about the note pictured at the beginning has a great blog
A Special Needs Mom

Here is another great post by a gal I was impressed by
A Note on Her Windshield, But She Took it as a Compliment

Seeing The Everyday and Traditions

SEEING THE EVERYDAY
"Our Lives are the sum
Of each moment and interaction.

Each day we work, eat, laugh, teach, play, read, remember...
And work at it all again the next day.

Within the seemingly small moments we find the opportunity
To build relationships, develop character, find joy
For the price of our time.

Life's most essential possibilities are realized at home.

Where we share, teach, grow, learn, serve, give
Our best without praise or fanfare.

Because every effort, every moment matters
In the development of a person.

Nothing is really routine.

To all who see the everyday."
Seeing The Everyday

               ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have blogged about the wonderful magazine, Seeing The Everyday before but I wanted to write their beautiful poem they have as their "purpose" again because our beautiful, lazy summer is ending and the school year is about to begin and I find it poignant.

I am not a runner, a rusher, a crazed mother of 8 (although that does not mean I am not crazy, I am just boring). That is not how I choose to live my life. However, I can feel the stress of the change of seasons and I want to sit down on this rainy day and remind myself that things can and will remain as calm as I keep them. I cannot control everything but I can control how I react. I can control how much I allow into our world and I how much importance I put onto things that do not last.

Seeing The Everyday points out beautifully the things that last. I invite you to go back up and read the poem again. If you are a Christian this is particularly important because eternity is ...well...eternal. Life is not going to be especially pleasant rushing around to the next thing. Not for us anyway. Each day in our family full of medical can be the last. I will not live in a way where I have to regret anything, so I am not going to be out of breath, angrily going here and there for nothing more than making others happy for things that do not last.

This magazine grounds me back where I know I should be. Where I have always been. Where I want to end up. Where I was raised to be. Where eternity will be. 

Goodness

Generosity

Sacrifice

Calm

Quiet

Peace

Acceptance

Suffering

Happiness

Hard Work

Togetherness

Etc.

Fall is a time to get back to the daily duty of school, work, more chores, getting things under control for winter and our extensive medical mumbo jumbo. Fall is just the BEST time of year. I dearly love Fall. 

We had a spectacular summer here in the Pacific Northwest. That doesn't happen all that often here. It was just so beautiful. The kids got to swim almost daily and we had little in the way of medical disasters for them. We spent many days visiting, playing games in the sun and having Popsicles!  It just doesn't get any better than that in this life.

Having a big age range of kids means we have a huge social network right here at all times....day and night! It's crazy and it's fun. We never lack for company or anything to talk about that's for sure! Even with that our home is a pretty calm place as we try and live out the poem above. 

Ed and are pretty boring people. The daily little things are what is important to us and always have been. We take walks, play board games, tell jokes around the room as the kids roll their eyes and groan. On sunny Sundays we sit outside around a plastic table covered with a lovely table cloth, eating Popsicles, visiting for hours. This is what our family does for fun. It requires no money because after our medical monstrosity there is none. 

And you know what? Our children think this is totally fun. They never say they feel they're missing out on big weekends that require big price tags at far away places. We are so thankful.

When we make cut out sugar cookies in the Fall and Christmas and Easter....even the adult kids come home to do it. When we make candy houses at Christmas....even the adult kids come home to do that.

We have many traditions like not until Oct. 1 can "It's the Great Pumpkin Charlie Brown" come out and be watched, no matter how many times the kids ask. It's an anticipated event. You should see the 20 something-year-old kids sit down when that thing comes on....cracks me up every time! I have to admit Big Ed and I sit down too and totally enjoy it. Then they watch it 50 times....geez.

It's a Wonderful Life is watched the evening of Thanksgiving.

We have a  tradition of The 24 Days Before Christmas with something special we do each of the days of December.

The list goes on and on and on.

Because I grew up an only child in a broken home (a lovely home in which my Mom did her best and did a wonderful job) it was important to me to create a million and one traditions. It seems silly but one tradition meant so much to me it invaded my drug clouded mind... I arrived home from my first brain/spine/spinal cord surgery on 14 medications. Three major pain meds more powerful than morphine had me just a little goofy. I had 3 major surgeries together so I didn't have to have them separately.  It was my choice so I wasn't out of commission 3 times and away from my children. I am tough as nails and knew I could do it but boy I had no idea what I was in for ! I was in the hospital in NYC for 2 weeks and gone from my children for a month. Anyway, when I got home it was super important for me to make my homemade pancakes for the kids like I do every single Saturday morning....go figure. Here I am, bald and goofy mixing up pancake batter. 

I can't tell you why this was so ridiculously important to me but it was. I can only surmise it was something familiar in an unfamiliar, hard time for me. It was a foundation, it was security, it was HOME.  It made me feel things were okay when I didn't feel okay. Traditions are like that.

These traditions mean a great deal to my kids and their girlfriends/fiances now. It's amazing to me how much they mean and it warms my heart.  

We seem to live in a world where traditions are not quite as important as they used to be. I think it might be why we have so many kids running amok trying to find love and security in all the wrong things and places. 

Everyone is in a hurry. Everything is fast.

We need things that are special, things that remain the same, that come around again and again, that remind us things are okay, there is some security in a crazy world, there is a foundation to come home to, there is a God, there is an eternity. 

I believe traditions say this.

If you are looking for a magazine to have a cup of tea with, Seeing the Everyday is the one. It warms your heart and your soul. It isn't mushy, it is real. It isn't expensive and it will give you some ideas about how to slow your life down enough to see what is real and lasting. 

~Blessings~

Lisa

My Hubby's Favorite Treat

My Husband's favorite treats are called Easy Cherry Tarts. He absolutely loves them. They are not my favorite only because they use those "whack-'em-on-the-counter biscuits and I do not like those things. But, the filling is super good. Anywhere I bring them they are a hit and they can be whipped up in a jiffy. They aren't cheap though since pie filling is a crime these days at almost $4.00 a can! But it's worth it for a treat and I made them tonight because poor Big Ed just had some oral surgery and he deserves a big ol' treat.

Here's the recipe....

Easy Cherry Tarts

1 Pkg. (8oz.) Cream Cheese - softened 

1 cup confectioners sugar

1 egg separated

2 tubes (8oz. each) refrigerated crescent rolls

1 can (21 oz.) cherry pie filling

* Beat cream cheese, sugar and egg yolk

* Separate dough into triangles and place on greased (or parchment covered) cookie sheet 

You can put 6-8 per pan

*Drop 1 Tbls. cream cheese mix onto wide edge of triangle then top with dollop 

of 3-4 cherries and a bit of sauce 

* Fold point of triangle up and over cherries and tuck under wide end

* Beat egg white and brush well over tarts so they'll be golden brown

Bake at 350 degrees 15 -20 minutes

Voila....

Yum Yum!

I made the first batch of these a few days ago and the cherries were in the fridge. 

 I went to do this little baking escapade and blog deal....and lo and behold SOMEONE HAD EATEN HALF THE CHERRY PIE FILING.  GRRRRRR.

Why am I even surprised?  So you see the two in the middle?? Those are two little sad wanna-be tarts who have no cherries, who have just sauce and sugar and are just sadly rolled into two lumps because a thief stole their cherries. And let me tell you everyone heard about it! Cherry thieves, that's what I have here today. Cherry thieves.

Then there's the husband who cannot wait to get his hands on his treats!  

He's recovering so he might get two!

Try these. There quick, easy and yummy!

~Blessings~

Lisa

80/20 ~ An Amateur Religious Study

I am by no means a scientist. I do however, have my own little scientific theory about religion and friends. I have a wide variety of friends in different religions and so do my children. We used to laugh in our neighborhood because we had the token Catholic, Mormon, Church of Christ, Episcopalian and Lutheran and we all got along great living out our faith!  

One of my sons recently went on a bachelor's weekend before a wedding and they had great fun as The Catholic, The Seventh Day Adventist and The Baptist. Wow what a group eh? They long ago hashed out their differences and have agreed to disagree on the stuff they will never agree on and agree on the huge amount they do agree on and have fun together as buddies and fellow Christians. They had a ball by the way, doing things the bride would have been proud of (wink, wink).

Most of my friends and I at some point or other, discuss religion or faith & morals since women talk non-stop and those topics come up if you are a thinking human being. Well, I shouldn't say just women because I have several male friends and I can see the eye rolls as they read.....sorry guys.  Anyway, no good conversation can go on without these solid topics coming up in one way or another, agreed?

I have been around a good long while, 48 years.....sigh. My Mom would laugh at that. But it certainly feels like a good long while and I am learning as I go still. What I have learned in this scientific study called life is this....

That easily 80% of what we believe and try to live out in our lives is in common with most other religions.  The other 20% we will never agree upon and it is not worth fighting over. Not because it's not WORTH fighting over but because we will never agree and we need to get along to be united for those who do not know God at all.

I'd say 80% is pretty stinkin' good don't you?

Now I am not going to debate who is or is not Christian or the definition of such. That is for the big time theologian Bloggers not me. I include Mormon, Muslim, Hinduism and all universally accepted religions in this post as we are friends with many types of religious persons and love and respect them for the way they live their lives. Because of our medical, we have lived for months at a time in NYC with Orthodox Jews, more liberal Jews, Muslims from Iraq, Iran and Afghanistan, and every religion under the sun. We have had extensive religious conversations with them and exchanged our beliefs. It was the most amazing time for our family and we learned a great deal. 

I was blessed to explain to our children why our Muslim friends excused themselves several times a day to their rooms. They pray 5 times a day at scheduled intervals and it's very important to them. They have special prayer beads that the older ladies carry around that are very similar to our Rosary beads. It was seriously cool and it was easy to relate to because it's similar to things we do as Catholics. There is beauty in the ancient religions. 

I sat one day with one of the older Muslim women (pictured below) and she and I had beautiful talks about the women of each of our our Holy books. It is a treasured memory for me. I had my Google translator from English to Arabic and there we were laughing at ourselves as we tried so hard to communicate! We got pretty darn good at it.

She was there from Iraq with her grandson whose limbs were blown off by a car bomb and he was badly burned over most of his body. I with 4 kids with brain and spine surgeries and my own 4th brain surgery. She and I, both there under serious circumstances, a Catholic woman and a Muslim woman were lovingly sharing about the Holy women of God. We were suffering like the Mother of God had suffered, watching children suffer like children should not have to do. But still we laughed, shared, cried and talked some more. 

Words aren't really good enough to explain it. 

It makes some of the First World problems I encounter here seem a little stupid and I get weary at times of the silliness, greed and pettiness that is constantly justified in our blessed country.

My daughter Mary and I with some of our friends from the Middle East 

Mary and some of our little friends in the kitchen 

of Ronald McDonald House. We had so much fun with these little men!! 

I have sat with friends as we discuss children, spouses (be they men or women), aging parents, financial difficulties, politics, morals, our own sinfulness, our own stupidity, our disappointments, our God and how He makes all things right.....about all the things that make us human. Anyone listening would not be able to tell which of the denominations we were!!  I think that's humbling and I think God smiles. 

Oh my gosh I have to write this (this is how my 4-brain-surgery mind now works, things just POP in) and I smile as I remember.....My one Mormon friend and I would go out to dinner and it would come up with the waitress how many children we had and we'd tell them we had 15 between us !  They would ask if we were Mormon or Catholic and we'd give a huge evil smile and both of us say, "BOTH" ! Their mouths would hang open because we were together. What??? We couldn't be friends? Or was it because we were reproducing rabbits?  Sheesh. We thoroughly enjoyed doing that to people I'm afraid. We'd even set people up just to do it....not very mature for two religious ladies huh? We just couldn't help ourselves sometimes. Whatever.

We had wonderful Hindu neighbors who changed our way of celebrating Christmas forever. The Mom was my good friend and she wanted to see what all the hubbub was about and asked to participate with me on Christmas eve. I  was a super-duper early and frugal shopper and started very early so there were many gifts for the children but not a lot had been spent. I had midnight Mass on the T.V. and she thought the Pope was wonderful, candles were lit, the children were in bed, it was lovely really. She was so excited to help and she helped carry gift, after, gift, after, gift, after, gift , after gift down the stairs to place under the tree.

Are you getting the scene here?????    I was truly mortified that night seeing it through her eyes. Seeing my unintended materialism as a Christian through the eyes of a Hindu who wanted to see how a Christian family celebrated their Holy time. I was so ashamed and humbled and rightly so.

We changed Christmas dramatically after that year. We had a big talk the next morning with the children. That's another post.

I realize the differences in doctrine of the different faith traditions is substantial and important but it's the daily living out of our faith and our behaviour and it's affect on others that really matters. It's what touches our neighbors and our family. It's our commonality and how we connect. I cannot deny the 20% because it's what makes me Catholic and I love my faith dearly and would defend it to the death if I lived in a place where that were necessary. But the 80% is where I live with my brothers and sisters in Christ(for me), where we support one another and where we share and learn.

We call this picture "What do you mean MY hair looks funny?"

Hagan and Steven  (Hagan is also Big Ed's little buddy!)

Hagan (from TN) and Steven (from WA) were best buddies following 

their surgeries and met up again (in NY) for more surgeries a year later!

We all love Ronald McDonald House of Long Island

On one of 17 medical trips to New York, Ed and I sat at the Ronald McDonald House kitchen table with a wonderful couple we have come to know and love. They are Baptist and from the south. Our children share several serious, rare diagnosis and have had the same multiple brain surgeries (see above pictures) so we have been through the ringer together and have a bond. We'd been in the hospital at the same time (the hospital knows us well so they put the boys together in ICU! ) and we were exhausted, had given the kids pain meds, put them to bed, so the talk was raw and open. 

They shared they had never spoken to Catholics before they met us(!) and wanted to know if we really worshiped Mary the Mother of Jesus and some other common misconceptions. We told them that no, we honored her like the mother of any important person is honored. God chose her as a very important person out of all other women on earth to give birth to the Savior, so she was obviously very special. We love her because of her unconditional YES to God without thinking, without thought of the consequences to herself from the society in which she lived. This is still so important in our own time and why Mary is still honored in the Catholic Church because of her YES without hesitation.....so simple. We must have the guts to do the same.....daily.

They were shocked. They said,"That's it?" 

 We said, "Yup, that's it. No weird worship, no voo-doo or human sacrifices or scary rituals". They laughed and so did we. They shared the misconceptions about their church and how they are seen as something they are not.

The Gospel has not changed, our yes like The Blessed Mother Mary's should not change. Pretty simple. She sacrificed with nothing in return but suffering. We should sacrifice expecting nothing in return. God takes care of everything and she showed us the way to her Son so we have a road map. Ya know...sort of like Vanna White with a sweeping gesture of the hand.  Is that sacrilegious??  Uh-oh.

I have had conversations with younger folks who believe that arguing their religious points on Facebook is going to win souls to Christ. Ummmmm....Nope. Not only do you waste your time arguing, you present an angry Christ, an angry Christian, and hearts are never won in anger. Christ didn't go around bopping folks on the head shoving the gospel down their throats. It just doesn't work like that.

Humor is also part of the 80/20 thing. It works much better than bopping. Because my roster of friends is rather ecumenical we have some funny conversations. Ed has some friends at work that tell bad religious jokes. Now mind you it's about their own religion, well and others if the truth be told, but they all laugh and no one is offended. The media would say that's bigoted and call the ACLU....bologna.  These guys and gals are also every color in the rainbow.

My one Lutheran friend is forever telling me I "get" to go to heaven "even though" I'm Catholic. I thank him profusely of course. His father was a Lutheran Pastor. A very holy man. One of my closest friends in the world is a Catholic priest. He is just evil in the humor department and this goes a long way. He uses his humor often to defuse difficult situations and to put people who might be uncomfortable around a clergyman at ease. In fact, I was at a meeting of ladies the other night and one of them (who is not Catholic) had met him at our home. She was telling the other ladies how much she liked him because of his dry sense of humor. I'll share....

This gal is wonderful and lost her husband suddenly to heart failure and has a child who is going through some very difficult teen years. She is not going to have any nerves left when these years are over! She had shared some of the problems with the group of us at the house and Father, being VERY good with people and knowing when he can do his humor thing, (at just the right moment) says, "Yeah....pause.....that's why I'm so glad I'm celibate !" 

 Oh-my-gosh...everyone was laughing hysterically.  She, being a non-catholic and never having met a priest was just won over completely and has mentioned it so many times since. 

Humor.

My friends and I joke about our faiths saying things like,"Yeah I'm the token Catholic or Mormon or Jew." Stereotypes are just stereotypes. Getting offended is for sissies. Don't bother. Political correctness is for dummies folks. Don't engage.  Unless it's downright mean,  it's stupid to get offended. Life is short and laughing is much more effective.  

Find the commonalities. Find what you believe in that is the same as your neighbors, co-workers, family members who do not share your religion. If you have to, set boundaries on what can and cannot be discussed so as to avoid confrontations that are sure to blow up.  80/20. There are those whose personalities will gravitate to the 20 just to be difficult. Stay away from them if they cannot respect the boundaries. It will inevitably end up in conflict and things like your family holidays will be misery. Explain 80/20 and that you prefer to concentrate on the 80 and that you realize the 20 is very important but you are not willing to argue over it. It's really just about choices. Wars are fought over that 20%.

  

The 20% is very, very important in our personal churches in our personal belief systems, in our prayers that our own families say and that our own churches say in common. I don't believe the 20% should be argued over or be the basis of broken relationships.

I know I am not "right", I know my %'s are not exact. I am not a theologian I am a stay at home Mommy, a professional patient and an unprofessional nurse/doctor. This is just my little brain's way of how I make it all work for getting along well in the sandbox of life. Hope it's a bit of a help.

~Blessings~

Lisa

Character

"Character is not something you teach, it is something you observe at home"  

This is a close quote to something I read today and so true. 

Can you teach good character? I don't think so. 

Can it be done in a lecture, a class, a sermon?  What about in discipline?

Nope.

I observed good character traits in my Mother during my formative years and in her speaking about her own years growing up in a good home. She spoke frequently of how she was raised and I always loved hearing about that, but it was her actions that spoke louder than any lecture or book or lesson on character building ever could.

She had/has a gentle, calm, serene way about her. She has strict boundaries, used in a gentle way  that allow her to be at peace and know where her strengths and weaknesses are. She knows when to say yes and when to say no so she neither hurts herself nor anyone else. I admire this in her and she has taught me well. I hope I have taught my children this as well.

I read a book once on character building and it was good. There was one thing in particular I remember from it and it was this.....

Every "bad" trait has an opposite good trait and vice versa. Or, in religious terms, every vice has an opposite virtue. This is a wonderful thought when training up children to know that this opposite trait business can be used for the good. Let's face it, to have an argumentative, never-let-it-go sort of kid doesn't sound too appealing to a parent but if guided properly you may have an attorney in training right???  If we can take their natural traits and teach them to use those for the good we foster character building.

Do you have a little Jane or Johnny who takes apart your doorknobs, your DVD player, maybe even your computer? You may be very aggravated but you may also have an engineer in your midst. It's helpful to learn to look at what our children can do with the things that may annoy us. If we give them the freedom to use their talents with something they cannot hurt then we teach them their talents are needed. That they are needed in the family fosters character.

We had some plumbing problems. We decided that we would let one of the older boys (meaning a 12 year old!) try and fix it. We would have had to call the plumber anyway so why not let him read up on it, give it a whirl and do his best? He was our guy who took everything apart.

He did a great job!! He had a bit of help and we did not have to pay a plumber and to this day does most of our plumbing!! He got so much confidence from that and this does so much for a child's character as a man-in-training. 

Do you have a show off, a real people loving child?  Take them to the local old folks home and let them chatter away. We have one of those and she frequently goes and plays piano and sings to them. She has read stories and just sits and talks to them. One little old gal thinks Mary is her old school chum so Mary plays along with the game. This is our people person and she brings great joy to these people who are often forgotten. This fosters great character in a child.

We have a son who is also a people person and he too likes older people. His friends his own age used tease him because he "hangs out with old guys". Sheesh. Yeah, he had several "old guys" in their 70's who he loved to visit with, hunt with, work for, be teased by and tell jokes to. They loved him and bossed him around and were thrilled someone his age cared enough to hang around with them. We don't really live in a world like that anymore. We encouraged his friendships. Mike's character was formed by these "old guys" and we are thrilled they took the time to "hang out" with him. This was good old fashioned character building.

We have mostly introverted children out of our 8. Everyone strives to get them"out of their shells". They do not want to be "out of their shells".  They are happy right where they are and we love them just the way they are.  They are polite, they smile and say "hello" appropriately and are not "shy". They have solid characters.

I know it's shocking but do you know that one half the population is INTROVERTED. Yes, I'll say it again ONE HALF of the population is introverted. 

And being quiet (this is not the same as shy) is not a negative character trait folks.  It is not a pathology nor is it something to conquer.  

There is a wonderful book I have mentioned here before and I highly recommend if you know, love or are an introvert. It is called "Quiet, The Power of Introverts in A World That Can't Stop Talking" by Susan Cain. Meticulously researched, with dozens of studies and real life stories, this book is excellent. Susan herself is an introvert who was a high powered attorney. It tells how up until the 20th century so called "advice manuals" on character spoke in terms of attributes like...

Duty

Work

Golden Rule

Honor

Morals

Integrity

Manners

These are easily had by both introverts and extroverts alike. 

However, by the 1920's the words had dramatically changed to....

Magnetic

Fascinating

Stunning 

Attractive

Dominant

Forceful

Energetic   

(the above lists are from the book "Quiet")

It is no coincidence that in the 1920's Americans had become obsessed with movie stars.  How many movie stars come across as introverts?  The time for introverts was over and it had become a pathology to be an introvert, something to be "overcome". A character trait to be rid of.

I myself have had to learn the value of this trait. It is one I now see as important to society as it's foundation because of their ability to wait, watch and listen before doing anything. To ponder, to keep things in one's heart. Introverts are wonderful, I am married to one. Extroverts are pretty special too. Both types of people are wonderful. The character traits they each possess compliment each other and both are necessary. Buy that book and study it. It's exceptional.

Character building begins the very day a baby is born when they begin to watch their parents interact with one another and the world around them. It's everything we do as parents when we are not thinking about it that matters. The way we speak when we don't know the children are listening, the way we talk to each other when company is not around. 

It's returning to the store when the change is incorrect and the 8 year old has seen you count it. 

It's giving back the extra fry in the McDonald's bag even though you know they will throw it away.

It's not talking on your cell phone in the car, not because you have checked and you know it's safe but because the LAW SAYS IT IS NOT and if you get to decide which laws you get to follow then SO DO THEY WHEN IT'S THEIR TURN.

This list can go on for eternity.

Character is never doing what you do not want your children to do. And of course always doing what you want your children to do.

In a perfect world this would be easy and of course we all know this is not a perfect world. But a great deal of effort pays off big time. Seeing our kids do the right thing is beyond rewarding. Watching them do the wrong thing is coming too and forgiveness must be there.

This parenting business is exhausting but we did sign up and we have to run the race until it's finished which Ed and I have recently figured out is NEVER......sigh. Ugh.  We sort of thought this 8 kid thing would be done when they grew up but it isn't turning out that way....exactly.

We still worry. We still care. We still feel ill if they get really sick. We still stress when they are stressed. Geez.....

But God is good and they are all smart, make pretty good decisions, they all have good characters and we all laugh a lot. My Mom is proud and I am thankful. This big family business is fun if nothing else.

~Blessings~

Lisa

Sturge Weber, SUDEP and Jeremy

I have a little friend named Jeremy. I have known him since he was 4 months old when he and his family moved in next door.  His Daddy Paul is in the military and has served 4 tours in both Iraq and Afghanistan totaling more than 4 years away from home and family. I have already written about his mom and my good friend  Amanda, here.

Jeremy

 Jeremy has a very rare condition called Sturge Weber Syndrome (SWS). For a brief explanation go Here.  Among many other things it causes seizures. These seizures are not like normal seizures people have, each one he has can result in Jeremy having a stroke. He has taken seizure meds all of his life. 

http://www.sturge-weber.org/

When he was very little and Paul was deployed in Iraq, Amanda came running over. Jeremy had been seizing for more than 5 minutes, a dangerous situation where medication is given and if ineffective, emergency medical care must be called. She called 911 and he was transported and admitted to the army hospital. The next day that child had more than 60 seizures as we stood by his crib. It was so hard to watch. He was so little and his Daddy was so far away. Amanda knew what he needed and the staff was not listening. After a little talk and after they actually googled Sturge Weber (because they'd never heard of it) they were on board and began to listen to Mom. Amanda was now a veteran medical mom.

Jeremy has endured many, many painful laser surgeries to try and lessen the vascular complications of the port wine stain on his face, head  and ear. It extends into his brain which is why there are cognitive and motor difficulties as well as seizures. Each time he is put under a general anesthesia there is the danger of more seizures and stroke.

Jeremy after a laser treatment. Pretty painful stuff but he's a trooper!

A card and present after laser surgery

After Amanda's boys, four in all, grew a bit older she began a quest to educate, raise awareness, money and to help train a service dog for her son. It has been quite the journey to watch, in fact it's called Jeremy's Journey and you can follow it here.

It has gone world wide and my friend would tell you it's no big deal but it is. She helps others and they help her. She goes to conferences and she helps others get what they need. 

 Jeremy needs his service dog Balto for several reasons. He is going blind in one eye due to glaucoma. This is one of the many complications due to Sturge Weber. This makes navigating stairs, curbs, anything requiring depth perception impossible for him. He also has balance issues due to neurological problems. Balto will be trained for seizure alert. Seizures are the reason for this post. 

 Most people have never heard of SUDEP. I know I never had until Amanda told me about it. It is Sudden Unexpected Death in Epilepsy. It is grossly under reported by coroners but there are two states New Jersey and Illinois I believe, that just past bills requiring epilepsy to be considered during an autopsy and if SUDEP is considered it must be registered in a national registry.

Due to a lack of large-scale, population-based studies and since SUDEP often goes unrecognized by physicians and medical examiners, the incidence of SUDEP is probably underestimated at 1 per 1000 people. This may be because of inconsistencies in the investigations and recordings of these deaths. In people with frequent epileptic convulsions that are poorly controlled with medications, the rate may approach 1 in 100 per year.

 The following is from the Chelsea Hutchinson Foundation:

chelseahutchisonfoundation.org

"The cause of SUDEP is unknown. It usually occurs at night or during sleep, and this makes it hard to find out exactly what happened during the last moments of life. There is often, but not always, evidence of a seizure before death. A seizure at the time of death is not needed for diagnosis of SUDEP.

It is unlikely that a single cause will explain all SUDEP deaths. Advances in research are identifying critical risk factors and a number of potential mechanisms for SUDEP. Researchers are investigating problems with breathing, heart rhythm and brain function as possible causes of SUDEP. During seizures, there is often a change in breathing and heart rhythm. In most people with epilepsy, this is not dangerous. Sometimes, a more serious drop in blood oxygen levels or changes in heart rhythm may occur. Seizures may also affect the brain’s control of breathing and heart function. In addition, researchers are exploring genetic links between seizures and heart rhythm abnormalities. Further research is urgently needed to reveal these possible causes of death and to help people with epilepsy understand how to lower their risk of SUDEP."

Jeremy's service dog Balto will be able to alert Jeremy's parents or caregivers in the event Jeremy has a seizure. There are also machines that can detect movement and alert in the middle of the night with an alarm for those with movement seizures.

Lest you feel sorry for Jeremy.....don't. He is smart as a whip in some areas but deficient in others as is common in those with SWS.  He smiles at everyone, loves trains, school and his Ommie and Pawpaw. He loves to ask Mr. Ed about the Post Office and his mail truck and we love to have him over to play trains. Our boys have always liked to have him around even though they don't talk much. They build elaborate train tracks and cities together.

 When they still lived next door we were describing Jeremy to someone once and said something about his birthmark. One of  our little boys said, "What birthmark?". I thought that was funny, they don't even see it because they have known Jeremy since they were all babies.  It is not, however, that easy for him in public. He is stared at and pointed at and it hurts. He has a younger brother who is ready to punch anyone who gets near him! He's well protected....always has been.  But it isn't easy. Amanda tells me adults are the worst. They don't mind people asking questions or if you want to look then look, but smile then look away. It's just a colorful face and a sweet one at that. 

~Blessings~

Lisa

Doctors Are People Too

I am good at a few things but what I am exceptionally good at and it is my primary talent.......

 Being a patient and the mom of many patients. Aren't you super impressed?? With this talent I live in doctor's offices, hospitals, operating rooms, infusion centers, pharmacies and labs. 

I did not ask for this talent. 

I do not resent this talent. I accept it like I do all of God's gift's to me.

I don't normally whine about it although every once in a while I do sniffle and feel sorry for myself.

I often laugh about my talent, am quite proud of it but I don't really have a way to show it off.

I share my talent with those who are new to the medical way of life and are shell shocked.

What I also do (with a raised eyebrow) is get very defensive about doctors. 

I do this because     1.)   doctors get bashed constantly and much of the time it is unfair    2.) I have several friends who are doctors so I have an insider's perspective.   3.)  There is a new movement that medicine is this covert operation by the government to hurt people.

Physicians are often misunderstood. Now mind you I am not in their social or economic class so please do not think I defend on that basis. We are SO not there in this family!  It is because we live in the same medical world with them. We speak the same language and spend waaaaay too much time together that I have any knowledge at all on this subject.

I realize there are stinker doctors. I know there are arrogant, rude, know-it-all jerks who deserve a smack-down. We call them god-doctors with a small "g".  They fancy themselves as god and they are scary. I have met them, I have been put down by them and I do not return to their offices. I have wanted to run from them while in the hospital under their care. I have had them taken off the care of my children because I didn't think they had their best interest at heart, so I know what it is to come face to face with a stinker.  I am not a ninny who is blind regarding an unkind physician who doesn't care about humankind.

However, most physicians are good folks. They chose this field because they want to do something good, to help people, to make the world a better place, many feel called to a life of service and sacrifice.

Do they get disillusioned? Do they get beaten down? Do they become exhausted and over worked and tired of the governmental and hospital administrative cogwheel that beats them down?  Oh, you bet. I know enough physicians and have enough friends that are physicians and let me tell you it's not what it's cracked up to be from the outside.

Physicians do want to change the world and make it a better place and they do have that power but they are also just people. They are not God, they are not magicians. They cannot make everything disappear with a pill or scalpel. Antibiotics do not cure every ill nor does the latest homeopathic remedy or vitamin. Medicine is as much art as it is science. 

Dr. Robert Lester III
It's ridiculous I can't even find a professional picture of Dr. Bob.

Only flying ones...he'll like that!  That's Mike with him.

Our wonderful amazing pediatrician taking the kids flying. Before your jaw drops, he shares this plane with several other doctors!  He is a good friend and great physician. He is however obsessed with flying. The kids could be turning blue and he would somehow get flying in on the conversation!! Sorry Bob!

Did you know a doctor has bad days? This sounds stupidly obvious, but if you go for an appointment and it has gone sour does that ever enter your mind as you leave madder than a hornet? His kids get sick, his family has hardships, he has stresses just like you do. He may have elderly parents who are ill. My friend who is a pediatrician would be on call all night, see little patients all morning, run to the hospital to see his elderly mother and have lunch with her on his lunch break, then back to the office for patients all afternoon then rounds in the evening. After all that he goes home to his family (a wife and 3 kids) so he can be on call all night again....then start all over again a few hours later. 

When should he spend all his so-called riches??? People do not often think about how a physician makes their income, how it feels to lose a patient, how it feels to make a human mistake.

Really....think about this for a minute. I am a Mom. I believe this is the most important job in the world. I form the hearts and minds of my children every day. If I make a mistake all I have to do is say sorry. If I am a pediatrician and write the wrong dose of meds or if I am a surgeon.... a neurosurgeon or a cardiac surgeon and I make a mistake......ummmm now what?  Human beings make mistakes right?  Not in the U.S. that means a lawsuit folks. It isn't just sorry, I made one mistake. Sorry your child is dead or handicapped, and even if it isn't that serious it is a huge deal. Think about the pain and guilt of the physician. Most folks don't make it that far. It's doctor bashing and many times a legal issue because of the ridiculous world we live in. Remember this is his or her job. Do you EVER make a mistake at your job???  It is not easy being a physician. 

Not all doctors are rich. Take a primary care physician.They may have more income than you but their college loans (not just 4 years folks), malpractice insurance, insurance premiums for their employees (and their own families), and overhead in general for even a modest practice would shock you. They get paid at an outrageously lower level than a specialist yet they are generally the air traffic controller of the same patient which requires a great deal of work (that is not reimbursed) behind the scenes. They do all the work before and after the patient sees the specialist with a tiny fraction of the pay. I live in this world daily, I get the bills...it is truly financially unjust in many ways.
Plus they are the hands-on, familiar face the patient knows and trusts when they are concerned, frightened, angry, etc. 

We also know many specialists, some the top in their fields and we have some awesome ones. Our hero is our neurosurgeon, the one pictured below. This surgeon sacrifices for his patients monetarily and with his reputation as he fights for their care at the hospital where he works and at other institutions across this country. He creates teams of doctors to work on patients others are afraid to work on because of our rare disorders. He has fought in courtrooms for parents who have lost their children, he has paid for life flights for patients who couldn't afford it, he consulted with a doctor in China for one of my pediatrician's nieces at no fee. I could write a book on his charitable works.  He would wave his hand and tell me to shut up in his Italian accent!  I smile just writing that.

 He is an amazing man. He has a sense, a gut feeling about things that is super natural. He has operated on our family more than 20 times and has yet to be wrong. It is uncanny. This takes a dedication, a sacrifice that leaves him missing many things in his and his family's life. He is constantly at the hospital and in the O.R. He travels the world teaching at conferences. He answers e-mails 7 days a week and I have received them at 2 or 3 am ! This time he takes is not paid.

Love this man.  Dr. Paolo Bolognese

His dedication and sacrifice has changed the lives of several of our children....

And myself

Yes, he's nuts. This is after our daughter Mary's surgery. She's in ICU and there seems to be a party going on!

 He loves the kids and always entertains.

The man thinks outside the box for his patients because we have diseases that are rare. He gets what he calls the "train wrecks". People who have multiple disorders and diseases that are very complicated and they have been misdiagnosed for years. Many have been operated on by those who did not understand their complexities and have become much worse by the time they get to him. He will sit and listen because he knows people need him. For him to sit is particularly funny because he is super high energy. He doesn't even know how to walk, he run-walks everywhere. It's really scary to think he's in the O.R. for such long periods of time as a brain surgeon. Our last 2 neuro surgeries on our twins were 9 hours and 13 hours!! How he manages that with his crazy energy is miraculous. He has the concentration of...well...a brain surgeon!

Being a doctor in today's world also requires amazing patience. People come in after having been on the internet thinking they know exactly what they have. There is a depth to medicine that takes years of training to understand. Folks will get labs back and look up a high or low level and think they're seriously ill when the level means nothing. Levels are compared to other levels. They mean something only in light of something else.  The biochemistry of the body is complex and changes depending on many variables. No computer can give the answers. A physician must compete with what a patient thinks they know, having to explain why their new found knowledge is incorrect, putting the patient on the defensive. Is this a difficult or arrogant doctor?  No.   Information is wonderful but patients go in with their pistols drawn ready to shoot. The poor doctors are immediately on the defensive these days as are the patients when they walk in! It's rough out there.

Our family lives in the medical world constantly. In fact I am writing from Hematology/Oncology at Seattle Children's right now.  Our doctors here as well as our wonderful pediatrician, family doc and our specialists back east go out of their way to make our lives better, easier, funnier. They do special things for us, call us from their homes, bring us things from trips, email us and check on our family. I could go on and on. I get so weary of doctor bashing. Maybe the old saying "You can catch more flies with honey then vinegar" should be considered by more families.  Well....and bring baked goodies or a little treat to appointments!  I do understand there are stinkers but let them go and find the good guys. 

I could write an entire book on the amazing things doctors do for patients. They're everywhere in your city, in your town, in your doctor's office. It's sort of like soldiers......They don't talk about their good deeds, they don't advertise it. They just do it. Every day.  

Try going in to your next doctor's appointment with a huge smile, a cute joke, ask about the doctor's family. Don't assume he's God, don't assume she knows everything. She wants to help you.  If she is rude or short you might want to try again just in case it was a bad day and something in their life was difficult maybe a death or divorce or their own health problems. If there is a second bad impression go somewhere else.  I do recommend though that you write a kind but firm letter about why you are leaving. I say kind and firm because this will help you feel heard and it may help the next patient. It's important. 

Get references from friends. The best ones are from nurses. They know doctors from the inside out. If you know any ask their opinion. They know how doctors treat patients and how they treat their nurses.....very important. Nurses know what goes on behind the scenes and this says a lot. If a nurse (and even better a few nurses) likes a physician you know they are good.

Please remember what you perceive as a physician's life is not what it is in actuality. Try and really think about what medical school, residency, being on call all night or many in a row, daily rounds at a hospital, 13 hour surgeries, missed holidays, missed birthdays, etc. really is for dedicated doctors. The 8-5 hours your family doctor sees you is only a fraction of his or her work day folks ...only a fraction! Yes, they may enjoy higher salaries but there is a price to be paid not only by them but by their families. 

They save our lives. They save our children's lives.They are the ones we anxiously wait for while our loved ones are in the O.R. They are the ones who we call when our babies are sick in the middle of the night and we are in a panic. Let's appreciate them more and bash a little less.

~Blessings~

Lisa

Hitting...A Hard Title

I want to write this post in a sort of vacuum. I would like it written and read not as a finger wagging post nor as a "look how terrible these parents are" post. I really am still trying to find out why a certain behaviour is so common among parents in this country yet so ineffective. 

What drives it? What compels parents to believe it works? Why is it acceptable within a family yet not in the workplace or in society? Why is it legal one day and considered assault the next? Is it defended by Holy Scripture? Is it always wrong? Is it always right? 

Hitting. 

Not spanking a small child on the bottom.

Hitting an older child or teen or young adult.

Hitting. Shoving. Badgering. Insulting.

Are you angry yet?

Many of you are.

Is your heart beating faster? Is it because you are the hitter? Or is it because you have been hit?  Is it because this wounds you or because you feel justified in striking another person because they "belong" to you?

This interests me because I grew up with a parent who has never yelled at me even once. I was never hit by my Mom who had amazing self control always. I have many other posts about speaking to children if you're interested.  I am truly interested in this subject because I don't "get it". I do not wish in this post to criticize per se.  I am not going to address all the questions above, only some. I will not get into the Biblical issues regarding spanking as that is a never ending mess. I will address more later but today I talk about the self control exerted at will. I use the word "child" here to mean around
8-18 years. So here we go.

If you sit on the outside like a spectator and watch the last confrontation you may have had with your child that ended in a slap or push or hit, what did that look like?  What did it sound like from the outside in your new observer seat?

How would it have sounded to a kind, older neighbor? How would it have sounded to your pediatrician or Pastor? How about your child's teacher?

What was your demeanor that day?  Were you having a good day or bad? Were you over booked, over worked?  Were you in a hurry?  Was your confidence low, your self esteem attacked by someone else? Was there something or someone else who already had your blood boiling? Remember..... turn off your defensive mode as you read.

Does this child "push your buttons"?

In this same day would you have spoken to your spouse the same way? Would your spouse have also been hit?  Would your Mother-in-law have been hit? Your best friend?  Your boss?  Your neighbor? The idiot on the road who cut you off? The old lady in the store who's cart was in your way?

The family is getting ready for church on Sunday and there is chaos. Suzie cannot find her shoes, Johnny is fighting with Ben and your husband can't find his belt. You look like Attila the Hun and you're all late. Now the child who pushes your buttons says something rude that sets you off and you are DONE. What happens next?

What is so very interesting is......

When that happens at work there is no slap. When it happens within members of the family that are not your children there is no hitting. When you get seriously mad, when you are so darn frustrated and angry you could just spit there is no slap.

Why?

I want to know this answer. It is an interesting sociological phenomenon.

But when you have had it, have been running all day, dinner is late, Johnny has said the wrong thing and you are in your own home with no prying eyes a slap or insult is easy.

Does it work? Do you get the result you want?

Does the child smile and say, "Okay, No problem" and skip off and do just what you wanted in the first place?

Then I suppose in theory it would be worth the hit or shove or slap. But does it?

I really, really want folks to sit back, put on different eyes and see the situations when this happens and ask different questions and see if this behaviour works and if it doesn't, what does it produce? What would it produce in you if it happened to you today?

Do you know you can slap, shove, hit a 17 yr old kid and it is perfectly legal as long as you do not leave a mark, but on the day of their 18th birthday it is a crime? It's assault and rightly so. Now does that make any sense at all??  Behaviour that can get you arrested one day is acceptable the day before?  Hmmmm. Something to think about.

For this moment, don't get mad, don't feel guilty. Think logically about if this works and if it does not. Think why you do it to your child and why you do not do it to everyone else you know. That you have self control for everyone else but not them. Is there common sense in this to an outsider from another planet who is watching this behaviour?  That we would hit, shove, slap those we love the most, those who we would NEVER allow anyone else to harm?

 What IS this mechanism?

It is a very interesting thing to ponder.

~Blessings~
Lisa