Summer Time

I often marvel at how different things are in the last 20 years or so.  I had 2 of the boys at the orthodontist's office the other morning and as I was making their next appointments I looked around the waiting room. That waiting room was full of parents and children staring at their phones. There was no visiting, no stories being read aloud, no parents exchanging words with one another.

Twenty years certainly doesn't seem very long ago. I remember my Grandmother and Mother saying those same words......I am definitely getting older!

Technology, communication in general.....is so very different in such a short time. Things have changed dramatically.

However......

Summer is still Good Ol' Summer Time! Some things just don't have to change in 20 years to be great! Like....

 Our County Fair

Ball Games

Beaches

Gardens

Popsicles

Clear blue pools

Sprinklers

The wonderful smell of sunscreen

Picking strawberries

 Picking our raspberries, blackberries and eating watermelon!

Independence Day

Picnics

 Daylight until almost 10:00 PM here in the Pacific Northwest

Hot days and cool nights

Hot dogs, hamburgers and corn on the cob

Flip flops

Being tan

Days on the lake

All these things are so simple, so timeless, so wonderful. I look forward all winter to these lazy days and they are exactly the same as they were 20 years ago.  No technology can make any of this better!

It is just lovely that some things just cannot be improved upon!

~Blessings~
Lisa

When You See A Special Needs Child

This very special post was written by my friend and fellow medical Mom. She and I met because we shared a brain malformation and spinal cord problem in ourselves and our children. While talking we also discovered we shared another even more rare disease...Mitochondrial Disease. We both have 8 children AND homeschool!  God was at work. 

 I admire Amy so much and now even more after reading this.....

When You See A Special Needs Child

When you see a special needs child, do you know what to do?  Are you uncomfortable, not knowing whether to speak or look away?

When you see a special needs child, you can't help but stare.  You think the parents don't notice as you sneak glances, but they do.

When you see a special needs child, the best thing you can do is smile.  Smile really, really big at the parents and at the child.  Say hello.  Compliment the child's hair, or clothing, or smile, or even comment on how "cool" their medical equipment is.  Because it is!  It may be saving their lives, or giving them mobility.  And how cool is that!

When you see a special needs child, you see tubes, and a wheelchair, and birth defects.  But special needs parents see their child, their baby.  And he or she is beautiful, and unique, and very, very loved.  The parents are so used to the equipment that they don't even notice it anymore.  They know it's what you focus on, and that makes them sad.  So please try to look past it, and notice their child.

When you see a special needs parent, you don't know what to say.  Should you ask about their child's medical condition or avoid the subject altogether?  Parents spend countless hours researching medical information and they want others to understand.  Please show that you care by asking questions.  Maybe you've even done some research on your own, and that's good.  But do NOT suggest "cures" or treatments to the parent.  It's okay to humbly ask if they've heard of such-and-such, but please don't speak with authority on a subject the parent is truly an expert on.

When you know a special needs family, you wish that you could help.  But you don't know what to do, so maybe you don't do anything at all.  Short notes or email messages that simply say "thinking of you" mean the world to them.  Dropping off a dessert, or fruit, or a meal is always appreciated.  Gift cards in any amount, or a five dollar bill to pay for parking at the next doctor's appointment, ease some of the financial burden.  Joining them for walk-a-thons or special events let them know you are with them on their journey.  Every little thing you do is actually huge to special needs families.

When you see a special needs child, you think how lucky you are that your own children are "healthy."  What you cannot comprehend is that special needs parents are truly thankful beyond words for the biggest blessing they have ever experienced in this life--a gift from God--their very special child. 

"When You See A Special Needs Child"
Copyright 2013 Amy Boyd & The Dare to Hope Foundation, Inc.

The author of this post is Amy Boyd, mom to Little Miss Mollypop.  Permission is granted to reprint all, or any part of this post.

~Blessings~

Lisa

Making Friends With Illness and Pain.....Acceptance

I have had a lot of time to analyze my own experience, that of our children and to listen to other's stories of living with pain, disease and disability. I have watched how coping plays out during many months at Ronald McDonald House living with other families.

Long term illness and especially pain can break you. Strangely, it can also become a friend.  Not a friend in the friend sort of way....but something you get used to, are familiar with, know how to handle. If you have a chronic illness you may know what I mean.

It can shape who you are in a positive way if you let it.
At the same time, this does not negate the  many difficult, sad, heavy things about it.  It ain't easy to hurt.

I am writing of acceptance as a way of finding peace. Not waving a white flag and giving up, but deciding to embrace suffering and be happy anyway.

One of my first observations of this was many moons ago when I was a pediatric dental assistant. Every so often, because they required more attention then our average patients, we had a day we devoted to handicapped children. We would always remark how much we enjoyed these days because, first, handicapped children are so special and second, these were the best parents in our practice. We would marvel that they just didn't get worked up over anything. They had been through the ringer and came out better than when they went in. They were warm, friendly, never demanding and able to cope with a great sense of humor. They could see what really mattered in life and weren't distracted by things being easy.

You see, when things are easy, we don't appreciate the small things and the small things are what life is made of. Hardship can mold a person into something beautiful.

I see this as we move through life knowing so many who are sick and hurting. There is a real difference in how folks handle this difficult life that they have been dealt.  It can break a family, relationships, even one's own personality. It can be beautiful or tragic.  It's a choice.

This is not to say making a positive choice to learn to live with illness and pain is easy or that it isn't frustrating, heartbreaking, lonely and isolating......because it is very much those things.  But it is a choice to go on happily in spite of them. 

How do people get a diagnosis of something terrible and come out of it eventually smiling and with some style? 

We sat in the waiting area of a neurosurgery office across country, 3,000 miles from home. We were there for another consultation for another child. I had already had several surgeries/procedures myself and was in the midst of learning a "new normal". A woman was sitting there and had been watching us. She finally came over and asked about our diagnosis', wanting to know HOW we lived with these monsters called Chiari Malformation, Ehlers-Danlos Syndrome and Tethered Spinal Cord Syndrome and were still smiling. She shared our diagnosis....and was not smiling.

She said she had lost everything and everyone after being diagnosed. She shared how no one wanted to hear about her many appointments, struggles with pain, financial ruin and how terrible her life now was. After a long chat (the doctor was very behind) I began to see what was wrong, where her sadness and bitterness was coming from.
The acceptance was not there. The regret and mourning that rightfully accompany a difficult medical diagnosis had consumed her instead of her letting it happen then moving on, revisiting it only now and then on a hard day. A long process to be sure.

This is totally understandable right?  Doesn't a person have the right to feel sad, despondent even, longing for people to understand, have pity and offer assistance? Yes, I they do....but the attention cannot last forever. The disease progresses, things get harder and harder but the newness has worn off for those not living it.  It isn't fair but it's reality.

Friends and family get used to the way you may limp, or seeing you in your wheelchair or seeing you with no hair for the umpteenth time. They no longer blink that you have multiple doctor appointments every week, or multiple surgeries in a year, it's normal. It may not occur to them that all the things that come along with a diagnosis, cost money....a lot of it. They just do not understand all the facets. They do not, cannot understand because they have not been given this cross to carry....you have. And it isn't their fault.

Then there's the expectations we place upon ourselves. Those are the worst of all aren't they?  I know for me that's the hardest part. I want to try harder, push farther, make more plans, go 100 mph....but the body just won't let that happen. Frustration.

In our family, a medical life is the only life many of our kids have known. Regarding pain, we all have learned to live with it in our own ways. There is no complaining because it doesn't help. There is no attention seeking because everyone here has the same things.  Drama is not drama when it's normal. We try and make friends with the things in our medical life that can be so destructive and work around them.

There is a lovely mom and daughter we met through all this. They have the same diagnosis' we do. This kid has had 20+ brain surgeries and countless days in hospital. She suffers...a lot. Her Dad left as soon as the medical ball started rolling. The mom cannot work full time because she has to care for the child and her sister who also shares the same diagnosis'. The medical conditions they have are rare so she is constantly explaining and re-explaining to new doctors things they know little about. Few understand.

With all this, they never, ever complain. They smile, socialize, laugh and simply shrug their shoulders when asked, "How do you DO this?"  There are no excuses made, no blaming, no feeling sorry for themselves. All they want to do is learn to live with these conditions and be happy. Searching for a way for the girls to function in the best way possible.

Why such a difference in people's reactions to illness? I don't know. But I do see the results of both choices and there is no happiness, no relationships, no moving forward when it isn't accepted.

These are some of the questions I asked myself long ago and I ask others when they seek some answers.

*Does it help to blame?  Then why bother even if you want to know the answers?

*Does it help to complain, even if it is justified?   Nope, it drives folks away...far away.

*If you take your frustrations from pain and illness out on others, does it make the pain go away? Nope, pain is still there AND you are alone.

 *Do you realize always wanting to talk about it and having it validated makes you the center of attention?  If this is often then to outsiders it makes you look self-centered when you aren't.

Because something is always hurting or bothering you, must you make others aware of it?

 *Are there others who suffer more?

*What are the blessings in your life?

 Having a disease can make us very self centered not because we feel important like in narcissism, but because our bodies are always making us aware of ourselves. This is so annoying but something we have to learn to ignore. This is a skill.

I have seen over many years that the more acceptance I practice daily, the more peace I make with pain. It's still there, it can still drive me nuts, but it's okay (well, usually). I know this goes against the grain of many people. Like accepting defeat. But it is NOT. It is accepting something I cannot change. It is arranging my days to achieve maximum effort and get something done while appearing as normal as possible.

It really is a skill. Practice. If, when asked how you are, you smile and say, "Oh, pretty darn good. You know, the usual garbage that goes along with this lame disease. But I am thankful it isn't much worse." An Oh-Well sort of attitude, I guarantee you, will get more attention than you do giving gory details or the results of your last set of labs! The less you seek attention with your situation, the more folks will care.  When you are smiling, happy, asking others about themselves you become less self aware of the hard things your body is enduring.

Find a way to accept what is hard and unchangeable in your life. Try and make peace with what God has asked of you.

Do it with prayer.

Do it with style.

Do it with a smile.

Do it to gain self esteem...... it's an achievement.

And it works.....most of the time.

~Blessings~
Lisa

What do we "deserve"?

I have a pet peeve. I have a real problem with folks who think something is owed to them when something unfortunate happens. Anytime something goes wrong, or someone gets hurt or there is an accident of any sort, they feel they deserve compensation.

Law suits have made the world view a bit skewed.  They have also made folks thin skinned in the area of tolerating hardship.

Have you been to the park lately? Most parks are so darn boring now because....Oh My Gosh...a child might, possibly, maybe, get HURT.....gasp!  Really? 

Because some fool has sued the city or park association because their little Pookie got hurt on one of the super fun structures, they must all be removed.  Maybe little Pookie wasn't coordinated, maybe the parents weren't watching them, maybe they just GOT HURT.  I mean that is in every kid's operating manual at birth right?  What on earth would we put a band aid on if they weren't supposed to get hurt sometimes?

Have you ever seen a kid climb a tree? We live in Washington State and we have serious trees here. BIG ones, Douglas Firs. What are we going to do about those rascals climbing trees????  Maybe tree climbing should be illegal.  One of our neighbors came flying out of her house one day because one of our 6 boys was close to the top of a fir in our front yard probably 2 stories high. I came outside and she frantically asked what would happen if he fell.  I thanked her for the concern but I told her we would simply take him to the ER. 

Really???  

What kind of life can a kid have with no risks? Well if your parents think your life should never have any hardships, then no, no risks should be taken. Boring.

What kind of character building can go on when it's believed that if something, anything bad happens, compensation of some sort is deserved? 

Suck it up. Get over it. Brush yourself off and get back on that horse. How about "Stuff Happens" as a motto? 

Do you think for every hard situation blame must be assigned? Why? Really, think about it. WHY?Does blame always have to assigned? Why does a person deserve something simply because an accident occurred?

Last year we were rear ended and the car was smooshed.  The young lady (an older teen) was not on her phone, was not texting, it was very bad weather, and it was an unexpected back up that she couldn't have seen until after she made a turn and there we were.  Her insurance company hounded us about how much we were going to "go after" her for. They were waiting for a high demand of cash. Huh?

Because there was no negligence in our minds, it was simply an accident. Yes, I needed the car and very little in medical cost taken care of, and that's what insurance is for, but we didn't deserve anything more. 

Did it shake us up? Yup.

Did we have an ER visit? Yup.

Was there lasting medical damage? Yup.

Was it stressful? You bet.

Did we deserve to "go after" her?   NOPE.

She was a kid who was taken off guard in bad weather and couldn't stop. Period.

Stuff happens folks.

We have had several very serious medical mistakes made on our children. The mistakes were not negligence per se so why would we deserve compensation?  Possible death was involved in one of them and the loss of a body part on the other.  We sought nor received not one penny for either of those.  Why would we? Because something bad happened? Because something hard had to be dealt with?  Does someone need to be blamed?

Part of this pet peeve has to do with Faith. We believe God is in control.....of everything.

He allows very difficult, sometimes unfair things to happen to all of us for very good reasons. His reasons.  We become better people, stronger, resilient, maybe even gain a sense of humor.  Nothing happens without it being used for a greater good....always.

We have had some pretty big things happen in our family. Our medical is such a huge, complicated circus even our physicians ask me frequently , "How do you DO this?"  Don't you think that implies it's difficult?  They compliment us on how we handle so much, that is so hard, for so long.  That says it's out of the ordinary. And it is.

We blame no one. There is no one to blame. It just IS. And we ask God how He wants us to handle it all, what is His will for us and for our children. What is there He wants us to learn?

There is no way to litigate any compensation from the myriad of diseases our children have. There is no compensation for "pain and suffering". It just IS. 

And there is pain and there is suffering...plenty of it.

And it isn't going away.

Why then, does someone who gets hurt, for example falling in a store, deserve compensation beyond medical bills if any? Have they never fallen in their home?  Maybe they're clumsy. Maybe they have a disorder that causes them to be dizzy. Why do they deserve compensation?

Why does ANYONE deserve compensation for "pain and suffering?"  Where did that start?

Babies are born with physical and mental defects.

People get hurt in public places.

Accidents happen that are just.....accidents. Not pre-meditated to bother someone or ruin their day.

Doctors make mistakes. If it isn't negligence like a surgeon operating while under the influence, it's just a mistake. Mistakes happen. There is no such thing as a perfect doctor.

Why must all of these be compensated or worse litigated?  Why does someone have to be punished because you are inconvenienced or maybe even your life is changed? 

Stuff Happens. Maybe it will make you a better person. Maybe you will grow from the suffering incurred or maybe you will meet someone or change some one's life by your patient tolerance of something very hard. God is awesome. He knows we only learn when something hard happens.

When did you ever learn something profound without some hardship?  Hardship is good for us. Really.

Someone or something does not have to blamed because something hard happens to you. Don't run for your attorney.

Pray.

Pray for strength, for wisdom, for patience, for humility.

So, I am done now. I will get off my soapbox.  Let's all buck up or as one of my sons says, "Open a can of man and get over it!"

Or......let's embrace the hard things that God sends our way as lessons in life for a greater good.

~Blessings~

Lisa

Act As If

Are you negative? Impatient?  Wouldn't it be lovely to adopt someone's positive attitude toward life or perhaps patience?  How about thoughtfulness, kindness, being a good listener? 

There is a way to adopt these traits without becoming discouraged.

Act as if.

Being a Catholic, I like to refer to the Saints because they have been-there-done-that.  They are not perfect folks, just ones who persevered in good with "heroic virtue".  Many of them give instructions on how to do just what I am writing about, change some quality we don't like about ourselves or adopt one we'd like to have. They say to "Act as if".

Are you moody? A brooder? Act as if you are in a good mood, even when you are not. What does that look like to you? How do people who are naturally cheerful look? Behave? It's a proven fact that if you smile, even a fake one, it will lighten your mood.

Are you grumpy and impatient? Act as if you are happy-go-lucky.... Say "Hello" to a passing stranger. Say "Thank You" and "Have a nice day" with a big smile.....or a little smile.  Smile and wave someone through a stop sign instead of yelling.  Look for ways to do good, step outside your comfort zone. Fake it until it is natural.

Let's take positivity (insert the characteristic you want). Yes, you act as if you are someone positive even if it doesn't quite feel right. Try it on strangers before trying it on folks who know you (obviously they'll fall over since they know you too well!). Only you know it isn't your natural state so strangers work better at first. You don't have to do it all the time, just keep trying when it comes to mind. Perhaps a little at a time.

Try it on.
Wear it awhile.

Do it more and more and you will become positive. I know this because I did it years ago. People comment to me all the time how positive I am ......little do they know I was Negative Nellie for my first 25 years. It was a trait my Mom gently tried to train out of me my whole childhood, but it took me seeing how unattractive it was in me to work on it myself.  It really didn't take long at all. I was surprised that after "faking" it for awhile I began to THINK like a positive person....it was awesome!!  Then I tried it on some other virtues I wanted to acquire and gosh darn....if it didn't work again!

It's so simple it seems ridiculous, but it works. Try it!

~Blessings~
Lisa

A Lovely Question

The other day my oldest son, 25 years young,  asked me in the kitchen, "How old were we when you stopped spanking us, because I cannot remember ever being spanked". He had been having a conversation with some room mates and this was their topic.

First of all my heart surged. He had good memories of his childhood. He didn't remember ever getting in trouble. That means the good far outweighed the hard. Yay. I was so happy and thankful about his question.

As I stood there I could see him long ago in his feet jammies, rumpled hair, yelling and running around with the red satin cape I had sewn for he and his brother, sword held high! Wasn't it yesterday? How could he be 25 and have a full time job and home of his own thinking back on his childhood? 

Didn't he remember the days of my exhaustion, grumpy attitude, telling he and his siblings over and over to do this or that?  Didn't he remember the chaotic bath/bedtimes and being told to shush and go to sleep?  Maybe, but his memories are happy and good of those days.

He was number 2 so I was still new at this Mommy business. It was a little while before I discovered peace amidst the chaos!

I told him we had always had a plan for discipline and that consistency when he was 1,2,3 meant I would not have to discipline near as much at 5,6,7.  This has held true for all 8 of our children. We were super consistent not because we are great parents but because in the long run it's easier on us!  I wrote about it here Or Else..... 

We believe that to discipline is to disciple which means to teach. Our job is not to punish but to make a child see his wrong and want to make it right. To teach them how to do things a better way. Hopefully to make them want to take the High Road in all things. This is/was a tall order but the only one worthy of parents who wish to teach.  This is not to say, however, that the kids have not had to make reparation to those they hurt or to make up for deeds that were destructive. Or....that I didn't totally lose it sometimes.

It matters to me a great deal that my children have good memories. I believe this sets them up for a well adjusted life. Not a perfect life but one with a solid foundation.  This question from my son made me hopeful that the good will outweigh the more difficult parts of childhood.  It was one of those moments as a Mom we all wait for. One of those cherished moments when you know you might have done okay. It was lovely.

~Blessings~

 Lisa

Going Back

Today our wonderful pediatrician, Dr. Bob, called. He asked me if he could give my number to a Mom whose child has a new diagnosis of one of our most debilitating diseases....Ehlers-Danlos Syndrome.  He has now diagnosed several families with this because he is humble, listens, learns and acts. The medical world would be very different with more physicians like him.

This gal called me and it took me back. Back to the day Ed and I were told one of our sons had a "catastrophic" condition and it had been missed prior to his heart surgery. The doctor said his aorta was very dilated and there was a danger of dissection....and death. He also had a deformed heart valve. He said this in front of our 14 yr old son. I remember standing there not able to say a word. Our son's life would change forever that day. We walked out and I couldn't speak.....something unusual for me. Ed either. We walked in silence and so did our boy. It's a long story and I'll tell it another day. 

The Mom on the other end of the phone was in the midst of pure panic. Panic and confusion at new words, a new language, new doctors, a new future. That was what she spoke of again and again....."It isn't going away" she said. I said softly," I know, I know."  I told her the diagnosis of a chronic progressive disease is very different than a diagnosis of something like cancer which has an end.....be it good or bad. (I do not mean to be disrespectful and put levels of importance to diseases but to explain the difference.) The knowing your child will grow up and always live with a stalker is very painful, full of mourning.

Her perfect baby boy was now not perfect.

Again, very painful, full of mourning.....with different hopes, different worries.

I tried to share things that would give her some hope. But the hope I could share really has to do with how things are handled. A disease diagnosis can destroy you and bring out the worst in you or it can make you strong and resilient. It can tear your family apart or bring you together, learning a sick sense of humor! It really is a choice. But it isn't easy and it isn't over night.

That day, way back in 2004, when we were told about Ehlers-Danlos Syndrome was the real beginning of our medical circus. We had had some earlier starts, with our 10 yr old son being diagnosed with hard to control Type 1 Diabetes and having 6 shots a day, our 5 yr old daughter having a stroke then seizures and me having unexplained neuro problems.  But to actually have a diagnosis that involved the whole family was big. Yes, after we were told what our son had, we were informed the whole family, that would be 10 of us, had to be examined by the cardio-genetics team at Seattle Children's Hospital.

 Oh boy, I had a ton of time for that with 8 children and homeschooling!

Thankfully for us they are world class physicians. We found one more of our sons had a mildly dilated aorta and another sat at the 99th percentile.  We all had a connective tissue disease....all of us. I went through my days then in shock. Shock and disbelief. Emotions I learned later were part of the normal grieving process.

These brilliant guys also discovered what one of our little guys had that no one had been able to diagnose......a very, very rare metabolic disease. At the time he was 1 of 60 world wide. Most babies who had it didn't live. We knew something wasn't right but I am seriously thankful I didn't know that when he was little and in the hospital all the time.

Ehlers-Danlos has a wide range of presentations. It can be completely debilitating and life threatening to fairly mild. There is no way to know how the disease will progress for any given person. It has many symptoms and manifestations but the most difficult is the unrelenting pain. Pain that there is little relief from.

There are things to help this pain, things to help the kids learn to cope with the pain. We have been blessed with a fantastic team of Pain Specialists at Seattle Children's that have made a difference in our children's lives.  They have worked as a team on one of our sons and one of our daughters. They took our son from not playing or moving because of pain to playing, laughing and riding a bike again. They brought our daughter Mary from a wheelchair, in constant pain and disability to being in college and living life with the ability to laugh, smile and hide her many medical problems. We are so grateful to them.

These amazing physicians are anesthesiologists who have a special interest in pain relief in patients who are awake! I thought anesthesiologists only dealt with patients in the O.R. One in particular took our family under his care as our "air traffic controller" which is a significant job let me tell you! Dr. James Mooney ought to work for the CIA the way he can elicit answers from kids on pain and the emotional consequences. Our children never complain of pain because they've always had it, so getting an answer is really, really difficult. He arranged multiple specialties to be involved in their care as well as new treatments for pain that have been amazing for Mary. Lidocaine infusions have allowed her to be back in the world after a long absence.  Rheumatology docs took her from limping, then in a wheelchair to dancing again!  The meds they use and the treatments they prescribe cost an outrageous amount of money but Children's doesn't count that sort of cost, they care more about the cost to their young patients' lives.

One of the hardest things I had to tell this Mom was that this disease is mostly invisible. This is both a blessing and terrible. A blessing in that the struggle of people staring at an obvious deformity is not there but so difficult because it is easy to become invisible.

 Invisibility. There is nothing more painful. Nothing.

I wrote about this here The Princess and the Pain

If you deal with pain well and don't project it on to others, it is invisible. This is lovely for those around you but acutely painful for you. If you talk about it, complain about it, share, people walk away eventually. It is too heavy....we get that. It is just a lose/lose proposition if you are the patient.  It is the rare person who befriends someone who has a chronic illness with a lot of pain and disability. They are special people.  Friends

But there is hope. You learn who cares and who can hear about it and bear the burden with you. You don't make illness your focus but it is part of who you are.  It is a precarious balance. You learn.

We choose, in our family to look at the myriad of diseases we have as a blessing for some greater good. And we have seen plenty of good from them. We have hope and faith in God that we have been chosen for a reason. It's just sort of...the way it is. We say all the time that taking others down with us, "taking prisoners" so to speak, isn't going to take away the suffering. We want friends, we want family, we want to be happy in spite of this circus we live in.

This is what I tried to convey to that Mom today. She seemed relieved, thankful and she sighed in relief. It made my day to do something to slightly lighten her load.  I cannot do one thing to change what is coming for her 16 month old baby boy, her perfect little angel. I cannot do one thing to change what is coming for her and her husband. I can, though, be there to listen, to encourage when it all gets too heavy. 

I am thankful I got to speak with her today because after looking back to that beginning of our circus, I saw how far we have come on the journey. It is still hard, still heavy, still daunting. But it's familiar now. We know the system now, the language, the innate difficulties, even the blessings.

We know Who is in control after all.

~Blessings~

Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are some of my favorite websites if you have or know someone who has EDS

www.ednf.org

http://www.ehlersdanlosnetwork.org/

 http://csfinfo.org/research/csf-funded-research/csf-ehlers-danlos-syndrome-colloquium/clinical-presenation/

http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

https://www.facebook.com/pages/Ehlers-Danlos-Syndrome-Network-CARES-Foundation/107023919382477?fref=ts

Choices

Do you have a child who you seem to forever be at odds with?  Is everything a struggle or argument?  If you say yellow socks she says red?  You want khakis for church wear and he says jeans?  How about some oatmeal and they want muffins? This can be a miserable existence.

Here's a helpful hint.  Give them choices. Choices that you like. If they have 2,3,even 4 choices and they are all choices you like then you are happy and they feel they have some control. Some kids need this, others are happy with whatever you choose for them. 

It's not a bad child who needs to exert some control. It isn't something they do to bother you even if it feels that way!  Their personal choices are not a personal attack against you they are just....choices. 

Those kind of kids pop out that way.  An easy going Mom may handle this but a more regimented one may go into fits over trying to force a child into compliance. I've seen this play out with sad, disastrous consequences. It isn't a discipline issue. It's personality. You won't win forcing the issue, you will just be miserable and the child loses.

It can turn into a discipline issue if you are forever arguing over things and they come to expect this with each request. We train them by our actions and reactions.

Sometimes it's how a parent presents the request. If the request is delivered with that sing-song "and I-don't-want-to hear-anything-about-it" at the end, you can count on a response you don't like. Kids know what you expect and if you expect non-compliance you'll get it. I rarely got a grumpy kid after giving them several choices then telling them it was a great choice. 

We even had nurses do this many times in the hospital. One of our sons was repeatedly in the hospital as a small child. The wonderful nurses would give him choices about how he could help them. Important choices that mattered. This took his fears away because that's what most stresses patients out in the hospital....lack of control over what is happening.  He would always choose to flush his own I.V.'s and that helped him be calm and compliant. Those gals knew what they were doing.

Give them choices. It's a great trick, and it's a win/win effort. Try it!

~Blessings~

Lisa

Rising to the Call.....

You know,  as parents we often wonder if we are doing okay in this parenting endeavor. In fact it can be an all consuming fear that we are not doing it right.  I can go along just "doing" life and then it hits me ,"Am I really doing any good with these kids", "Do they love God and their neighbor?"?  "Am I getting anywhere with teaching them how to get along in life", "Do they appreciate all we do for them"?  and on and on.  I really can't tell you how many hours I have spent thinking I didn't do enough, didn't provide enough, been creative enough to raise good, holy, thoughtful, patriotic children.  My whole life has been dedicated to this and it matters to me....a great deal, so to dwell on what I might be doing wrong is acutely painful.

One of my closest friends, a Catholic priest, can tell you how often I have had a meltdown that I am not doing very well in this Mothering business. He tells me always that yes, we are doing fine. But I don't think we as Moms can see this because we are too close. We don't see how they might be when we are not over their shoulders giving direction. I think this is common for all Moms once your children get beyond the toddler years and into the world. When you see them make mistakes, or maybe not do what you would do in a given situation or treat someone in an unkind way.  When you try and instill a kind spirit, or a sense of responsibility and you feel like you just do not see any fruit.

We have a strange life in that we live in a medical circus. Our lives are intricately interwoven with medical problems, appointments, surgeries, equipment, meds, etc. We are used to our odd life. It is normal for us. But I can sometimes step back and look at it and feel a sadness at a lack of the normal normalcy (as opposed to our normalcy) that many others enjoy.  I feel guilty that we don't do what other families do or go where other families go. There is a whole book waiting to be written on this but what I want to share in this post is the wonderful thing that comes out of this mess.

We have seen over and over that when we have an emergency or extended medical trip for neurosurgeries, our older children rise to the call like champs. I want to make it clear I am not bragging. I hope to encourage you that at the times you really wonder if you've raised a self-centered ax murderer......you probably have not simply because you care enough to wonder about it! 

I was cleaning out my school stuff from this last year and ran into two essays from two of the younger boys. I assigned the topic from the hospital in NYC after having another surgery. We were supposed to be gone about 10 days but it turned into a month when my hospital stay extended to 2 weeks.  The essay was on what they thought of being left behind again while Mom and Dad were gone. This was not new to them. Since they were toddlers they have experienced this difficult phenomenon. It has not been easy. The essays were so funny, sad, wonderful and telling that I felt a bit better after reading them.

The essays included being thankful how the older kids took them to the park, to Costco for hot dogs, on walks on the bird trail, and many other things. They also wrote of being bored and sad. They missed us yet both essays stated that they, "Were not worried about Mom because she has lots of surgeries and it's normal now."  This makes my heart warm and a little less guilty.  I never want them to worry about me to excess.

The essays also told about who did not do their chores, who did not pick up their things etc.!!  I thought that was funny because the younger boys picked up after them!  They wrote of the house just not being the same without Mom and Dad.

 We recently were gone for 2 months on a medical trip including 3 brain surgeries on 3 different people in this family!  Our older children took care of our home and anything that needed to be handled so darn well. Even their girlfriends cleaned our home, watered my plants, etc. They all pulled together for the good of the family and we returned to a spotless home.

What strikes me as lovely when I look back at these many trips is how the house still operates daily as if we were there. That's because we have a daily routine that rarely wavers. Our routine each morning comes before anything else including school. What I like about this is that the kids don't think twice about their daily work and they understand how it matters to how our days progress. When you begin the day behind in chores the whole day seems to be more stressful. The older ones have known this routine their whole lives, so to get up and get things done comes naturally to them. When we are gone, I believe this produces a security for the younger kids that things go on even when circumstances are a bit different. 

The older kids step into our roles with no problem at all. They do the shopping, chauffeuring, bed times, keep our rules intact. They get the house work organized, the many appointments handled, etc.  They put the younger kids first!  They fix balanced meals and provide fun treats. They make sure the many meds are taken and once our son Joe stayed up all night to observe, take stats and take care of one of the younger boys who has a rare metabolic disease and was having a metabolic crisis. He miraculously kept him out of the hospital!  It was amazing to experience this from across country where we were for surgery. He kept us up to date all night long on Frank's status. After this we knew we were doing okay.

It's funny that the same wonderful responsible, caring, even heroic kids that take care of everything when we're gone go right back to being kids when we return!  But it does give us a glimpse of how they will be out on their own when the rubber hits the road. It also shows us they are capable of caring for others first and themselves second. So important. 

I guess my point is....keep it up. Don't despair because they really do hear what we say over and over, as well as absorbing our actions. They internalize it whether they know it or not. When they have the chance to step up to the plate they'll use all those things you've taught them.  Have faith!

~Blessings~
      Lisa



   

Just Sit Down.....

Have you ever had one of those horrid Mom days where everything goes wrong? No matter how hard you try, the little ones are either screaming, crying, spilling, whining or following you around hanging on your leg?  How about bopping each other on the head? Or stealing a beloved toy from one of the little ones and hiding it?  Then there's the teaser who gets everyone going then laughs?  Yeah.....

It is beyond frustrating and can get you in a nasty mood quickly. I have found over the years that the only cure for one of those days is to give in and sit on the floor. Yup, just for a bit. Turn off the T.V., no electronics, just Mom on her rear end.

Really, plop yourself down and I promise everything gets calmer. The kids will bring you a book or a plastic tea party treat or a ball and will immediately calm themselves. They may even just sit down next to you and stare at you!

Sometimes they just need us right there.

Is this giving in? I don't think so. As Moms and particularly if you have a large family, we are always on the go. Yes, it's for them and about them but it isn't usually with them. We talk at the kids so much of the time. It's inevitable and doesn't make us bad Moms. Giving direction, instructions, etc. is a necessity to having an ordered life, but on a bad day it can get the kids all out of whack. Sometimes we just need to be with them at their level doing nothing.

I know you're probably thinking that's too simple, but it works and I always felt better too after sitting on the floor playing Lego's or tea party or reading 8 books!!  This isn't an everyday thing. It's for those days you are close to losing it, when all heck is breaking loose and you know you are reaching a breaking point.

Just STOP...then breathe. Then give in.

We homeschool. There have been days where I woke up and felt behind from 6 AM on. Those days always seemed to have one or more of the kids acting out too, so it would all escalate. I have called for a recess day many times and they turn out to be great days because we are all giving in and doing something different to change the mood. It was fun, unexpected and the kids loved it.

So on those days you're just DONE, have a seat on the floor. Give in. Wave the white flag. Even if you're exhausted and haven't gotten anything done on that To-Do List....give up and sit down.  The kids get creative, stop arguing and the mood lightens considerably. I guarantee the kids will be so much better and you will get those To-Do things done after your little pow-wow.

~Blessings~

 Lisa