7 Comparisons that will Challenge Your Roller Coaster Life

Special needs family life can be a roller coaster, in fact any family's life can be exciting with plenty of ups and downs, brief moments of calm thrown in and then thrilling loops, curves and ups and downs with some scary bursts of speed. What remains interesting with the roller coaster life is that no two rides are ever the same. So it's really not good to compare our particular ride with someone else's.

Our home has seen many challenges and endured testings that we didn't know about till we were well into the challenge. We were a licensed medically based foster home for 34 years with 406 placements. We have adopted and currently have 2 very special beautiful daughters age 9 with type 2 Spinal Muscular Atrophy, a 23 week 600 gram preemie, age 12 now with several challenges including her lungs and heart and at home we also have our 23 year old with Panhypopituitarism  unique special needs that now keep us going on multiple roller coaster tracks.

Life has been good. Despite the hardships and heart aches of life we can find joy in everyday living. One of the hardest road blocks for us to learn managing complex kids was that there are many different ways to approach the care of the child.  We need to always be observant and learn from the teams we work with. In the battle to save a child with a rare disorder not all medical professionals are up to speed and the families at first feel they need to trust them - but, sometimes only after they educate themselves first, then train the medical team on the proper care for their child. Nothing delivers the adrenaline and makes you scream like a maniac when you battle a medical professional and facility who have put you on the worse roller coaster ride available. This is the time for all families to not compare their children but gather together as teammates and become the village. To be successful we need each other to look for life's simple blessings, the more we hope and the more we rise above the disheartening strains and comparisons we will grow and thrive.

1. Comparisons will not help us through the trials. We need to fight the good fights. Instead of the comparisons we need to rise up to strengthen those in their struggles and refresh ourselves by drawing strength of all fighting their battles.

2. Comparison is not even practical when our roller coaster is in the midst of a death-defying plunge, anyone else's will seem calm and comfortable -- and vise versa! Looking over our shoulder -- or above, below, or around us -- can leave us either over confident or empty, discontented  and nervous.

3. Comparisons will always show us someone with a better life, a condition worse that ours or a disease we wish our kids didn't have to deal with. Situations dealing with schools, equipment companies, insurance companies and endless hospital visits along with numerous doctor appointments creates a roller coast ride in a very dark tunnel.

4. Comparison of our lives, our children's conditions and circumstances, our family and finances to another's destroys not only our joy but peace and contentment in our home and lives.

5. Comparisons of other families finances, successes, cars, lifestyles, health and happiness will not give us more happiness, health, friends or fun.

6. Comparisons can take away your whole life if you don't learn that the endless striving, and constant comparing is making you miserable. Yes things could be better in your life, in your children's lives. Yes we all wish for it, but in the end it is our opportunity and responsibility to make the most of the life we have. This doesn't mean to stop dreaming and working for the best for everyone in our home.

7. Comparisons can be related to selfies. The problem is that selfies are filling social media and our lives with false hope of assumed perfection. They are 'not real' and will eventually prevent us from being our best, most powerful selves.

Never give up and use what you observe in the world as a reminder that every family has made their life and may not be as happy you are with your life.  Even during your difficult moments you can decide to be happier, more positive today than you may have been yesterday.

• Instead of comparing, count your blessings.
• Instead of competing, simply accept and appreciate the people around you.
• Instead of attempting to keep up with others, find a way to rejoice in your highs and lows.

Look for friends and families who have more hopeful dispositions, more natural cheerfulness and more affirmative expectations.
Look for the bright side and resolve your life is just what your family deserves, when we do, our gifts are not just to ourselves, but to everyone around us.

Enough with the obsessions about the roller coaster car on the track next to us as being a bit less stressful, we need to simply get in our own car, buckle up, hold on and enjoy our ride!

Acceptance

Every year, every month, every day the internet and calendar is bombarded with awareness days of every type of physical and intellectual disorder and diseases. 

The month of August had us reading many inspiration stories of many of our SMA family and friends sharing their triumphs and tribulations dealing daily about life with SMA.

SMA Continues to be the largest killer of children under the age of two, but technology and modern science is providing hope daily for our families that's hard for some to understand. There is no cure today, but tomorrow who knows?

There are so many varieties of SMA and abilities of all those with SMA. It can be very encouraging and very discouraging to see a child with the “same number” doing things your child can't do. A number is something the doctors and researchers attach to a diagnosis, it is not how we label our kids.

As I have told folks about SMA, there is no cookie cutter type of SMA. 

With SMA you will observe children who have the cognitive abilities to perform with any Harvard scholar, but can't write their name due to the muscles in their body not working with their brain. 

Some-days you will see a child who is struggling to breathe or just survive every day, again due to their muscle weakness.

So I have people asking me what can your child do? How are they disabled? I'm shaking my head.

Most folks when they have a child, the first thing they ask is are they healthy, all their toes and fingers there, well our SMA kids have all their finger and toes. Most families are able to stop there as all they think about is there children are healthy.

Our children look like yours, they are like yours, but they aren't likes yours.

So what does our live entail that the other families don't understand:

• We as parents of children with special needs spend our free time (if you can call it that) advocating the government to get money so we can take care of them.
• We visit numerous doctors and specialist monthly, some in town and some far away.
• We go to endless IEP's (school meetings) so our children can get what they need.
• We advocate the schools to get speech therapy and occupational therapy in their classrooms.
• We fill out endless paperwork so they can get benefits that they are entitled to.
• We as a family turn their front doors into revolving doors for therapists.
• We open our homes and lives to strangers to become a part of our lives to help us.
• We want our children to go to a dance class or play soccer with a club. Instead we go to therapy and make special foods for our children and make sure they have the right clothes for the next day so they wont have a sensory outburst.

We don't get to the gym to work out as we work out everyday moving our kids from bed to their chair to their stander to their bath to their bed ... whew what a days workout.

Oh, and remember some of our kids have brothers and sisters that are unaffected and need your loving kindness also.

We are not negative people, just folks that are stressed out to the max, but loving it! Please accept us year around as positive people doing a fabulous job for our kids! yes they are special!

Awareness August has ended and most of you won't think about SMA until next August. 

We think and live about SMA 365 days of the year, sorry folks our awareness is ever present, so we have no choice but to show you SMA.

So what can you do?

We need acceptance. 

We need help – just ask us if you can help, cause chances are we won't ask you. 

When you see a special needs child take a look at how tired the parents look.

We love our kids. 

We love our jobs, and still care for our kids!

We love what we have to do, but we hate having to do it, yes we are tired, but don't get in our way.

A child with special needs will inspire you to be a special kind of person.

Just a few thought on SMA awareness till next August friends. ........Acceptance!

What a Very Interesting Weekend in our Society - November 2014

One of joy and tears. 

Two perspectives of young ladies and how they have lived their lives with brain tumors. 

My remarks are just a comparison of where 2 ladies have come from and what they did for themselves.

First, Lauren Hill who is attending college and enjoys playing basketball brought an arena alive while making two layups that brought the fans to their feet celebrating her baskets in what could be her last month as a brain tumor survivor. She is young and probably has now completed her bucket list.

Second Britney Maynard in Oregon celebrated the end of her life with her brain tumor by quietly taking her life her way. She had finished her "bucket list" and said she was suffering more with seizures.

I haven't read medical details or have I reviewed in detail the backgrounds of each ladies case. 
During the years I have personally seen kids, families and their friends deal with these situations where the tumors creates suffering with seizures and other catastrophic life activities. 

I'm not in these young ladies shoes and have no way to know how they feel everyday and what they are going through everyday. As bereaved parents my wife and I have been there. I can't imagine what their families are going through or what they have been through. There is not one journey that have traveled the exact same path or parallel. Each journey is unique to the individual. 

In my mind each has decided to live their life their way. 
In my opinion that is correct. 


I have had kids with terminal conditions including seizures in my nursing and foster homes in the past and have helped kids and their families live while making decisions that would affect there for years beyond the pain and suffer and  living life peacefully and naturally. 

I have known parents go to all ends to make their little kids comfortable. 
I have seen families suffer with tears of joy as they sat or held their child take their last breath.
I have seen families not know what to do.

It's sad there is no cure for so many conditions that have families traveling a journey they never expected. 

My wife and I have recently adopted a child who has a degenerative muscle disease and as of now there is no cure, but there is hope as there are many survivors living a happy life.

We do not want to face these issues, but, our family will and we will give our daughter the chance to make her decisions as she grows and develops her chosen life. 

Both these brave ladies have shown us what life is about -  through their eyes.

The bottomline is create a bucket list and keep it updated and finish what can be accomplished. 
Live in peace and cherish each breath.   

Thanks for listening.

FOSTER AND KIN FAMILIES

I just wanted to send out a reminder that some agencies do provide a clothing allowance for foster and kinship kids.
You need to ask your Case Worker / Social Worker what the stipulations are for receiving this with the kids you have.
In our county we get one payment allowance per year, I always try and get it around the time school starts to help with shopping.

It might not be much, but all helps out.

For those in Ventura County, the Ventura County Foster Parent Association (www.vcfpa.com) has a clothing store for foster families to use to supplement their kids clothing. They also have a large supply of new books for all ages.

PET PEEVES - A spin on Water, Ice and Moms

Not to beat some dead horses, but here it goes anyways ....

Recently an SMA family posted about the #ALSICEBUCKETCHALLENGE and the connection with SMA. The SMA family wants to thank ALS for opening the door so we can now bombarde you with information on our kids.
We all know that this is a great fundraiser and will be in awe of it for years to come. Let's all hope that the monies will benefit cousin diseases such as SMA which is the largest killer of children under the age of 2. So they have raised millions of dollars and if you want to consider sharing, then please ask me what SMA research would benefit from your dollars and Ice!
Now, this peeve is for us in the Southwestern USA, California and areas short of water, just imagine if all of those in the midwest and east would ship this ice and water to the western states we could refill our water reservoirs and lakes and save our grass, trees, and shower more than twice a week ...

The morals to these peeves are save your water and send your money to an SMA friendly research project!

Pet Peeve # 2 .....
Still concerning Facebook and many posts are addressed to Moms, now as a man don't get me wrong moms are great ! BUT ladies, there are men on a lot of these groups that could offer a lot of information to your questions.

The moral to this peeve is open your questions to all of us!

Pet Peeve # 3 ....

This one I'll throw in as a closer is the use of abbreviations and shortening of words. The age of texting started this with a limit of words to 160 when texting started, people abbreviated words. Texting is now wide open and able to write full and complete sentences. OR, maybe schools haven't taught everyone how to spell yet?

The moral of this peeve is that Shakespeare made up words in all of his writings, when you achieve his status of writing then you can use strange words such as he did .....

Now What Say Ye? 

A Simple Introspection: IT'S NOT FAIR – WHY DO BAD THINGS HAPPEN?

A Simple Introspection: IT'S NOT FAIR – WHY DO BAD THINGS HAPPEN?: IT'S NOT FAIR – WHY DO BAD THINGS HAPPEN? It's probably the oldest question in the history of human thought.  It's sure...

A Simple Introspection: WHAT IS YOUR SHOCK AND AWE?

A Simple Introspection: WHAT IS YOUR SHOCK AND AWE?: August is SMA awareness month.   Do you know that it is very hard to unknow something that you have learned?  So please take a few minute...

WHAT IS YOUR SHOCK AND AWE?

August is SMA awareness month. 

Do you know that it is very hard to unknow something that you have learned? 
So please take a few minutes to get to know something about SMA. 
Do you pay attention to viral internet causes? Do you know about the Ice Bucket yet?
This has been a great public awareness campaign and fund raiser for ALS. 

This is a great example of guerilla marketing. But there is more, here is the rest of the story. Thanks ALS for awaking the sleeping giant from your kissing cousin SMA!

• DID YOU KNOW that the purpose of the ice is to show you how the body is shocked when ALS takes over.
• DID YOU KNOW that SMA is the little people version of ALS? 
• DID YOU KNOW THAT SMA affects 1 in 6000 kids everyday.
• DID YOU KNOW that our Lil Darling has SMA? She "inherited" this dreaded disease from her parents who didn't know they were carriers, they walked out of her life and now we are honored to have her in our forever family.
• DID YOU KNOW that most families struggle hourly with the medical challenges of raising a child with a dreaded neuromuscular disease that is slowly killing them. Some sooner than later.
• DID YOU KNOW that SMA is very similar to ALS? Check out this chart attached 
• DID YOU KNOW that all the little kids battling SMA don't understand the genetics of how they have been given this dreaded disease? 
• DID YOU KNOW that some of our kids think that feeding tubes are normal, along with ventilators, braces and wheelchairs?
• DID YOU KNOW that there are hundreds of thousand of carriers that could be tested to see if they have SMA. For information visit www.gettyowl.org
• DID YOU KNOW that science is very close to finding out how modern technology can help our SMA kids live life better or even help prevent this dreaded disease? 
• CAN YOU IMAGINE our little girl getting to WALK - that is all she wants 2 steps she says.
• CAN YOU IMAGINE SMA kids with no wheelchairs, no ventilators, no therapies and talking?. There is an organization that is helping raise funds for our kids to be "normal" from talking to using their fine motor skills. This organization runs so someday our kids will run. Check out www.thegsf.org

SO WHAT CAN YOU DO? 

• EVERY MINUTE is valuable so please take a minute to learn and tell others about SMA. Check out www.curesma.org
• EVERY MINUTE there is a new condition discovered with modern technology. There are plenty of conditions and orphan diseases that need publicity - choose your favorite and make people aware!

EVERY MINUTE SMA will SHOCK a new family. 

Now that you know the rest of the story what will you do?

WHAT WAS YOUR SHOCK? AND WHAT WILL YOUR AWE BE?

You may not have any SHOCK now, so please find time to show your AWE and help a family.

IT'S NOT FAIR – WHY DO BAD THINGS HAPPEN?

IT'S NOT FAIR – WHY DO BAD THINGS HAPPEN?

It's probably the oldest question in the history of human thought. It's surely the most disturbing, the most frequently asked and the least satisfactorily answered: Why,  do bad things happen?

How do we manage the frustration, anger, helplessness and all the other emotions that flood in when this happens? I never saw one class in school with a title “Dealing with Terminally Ill Children, Parents, Orphan Diseases and Other Unknown Maladies.”

• Is it different looking in or being in the situation?
• Is it different for the doctor than the family?

Yes it is, but why?

Everyday of every week of every year we hear the news on radio and television, we read the news in the paper and we are crammed the news on our social accounts and our internet pages. 

Most of these new feeds are of the bad nature - cause we want to read it! 

We will look at the warm fuzzy news, but we are drawn to the bad.

Everyday of every week of every month there is an awareness day. 

From cancer to autism to energy to child hair loss we are made aware of something new to us, this isn't fair that we have to suffer through these conditions to feel good. 

There is an “official” site ( Chase Calendar of events) -( http://www.mhprofessional.com/templates/chases/special-months.php) for listing awareness days and months. There are som many events, days, weeks and months for all types of activities that seek our attention.

I checked out the site and couldn't find one condition one of my children have - panhypopituitarism. There has been so much advancement in diagnosing this disorder in the past 19 years - I'm just happy that these kids are thriving and are survivors.

Today as I scribe this note I am aware of the good, the bad and the ugly news from around the planet earth. Our family has fostered children that really makes us wonder WHY? From the homeless child to the ones with life threatening diseases and disorders to those whose lives have been taken too soon. 

Today only a few know that we are halfway through a month I knew nothing about 3 years ago. As we brought a beautiful little two year old into our home we had no idea we would be in the middle of Spinal Muscular Awareness month.

The message today is not about SMA awareness month, foster care, syndromes and orphan diseases, childhood cancer month or Juvenile Diabetes month. 

One part of the message today is the question why are innocent children brought into this world and then suffer unbearable conditions that not even some adults can pronounce let alone comprehend. Why are parents left childless - the worse grief anyone can bear. All grief is natural and normal and causes us to examine the relationship and discover that there were things we wish we had ended - differently or better. 

So this blog is questioning why do bad things happen?

If you believe in God, you will have one belief of why. I've found that when most God fearing people ask the question there is a hidden personal pronoun in it asking 'why did God let these things happen to people?' This is an accusation we bring to God, sometimes it is asked out of questioning why we are experiencing a life changing event in our live or in our world.

If you believe in evolution there are other opinions you may believe, but the question is when tragedy strikes, how do we handle it? And who do we blame? When innocent people undergo medical maladies, horrific disasters or when children are hurt or killed, these become particularly challenging times and tests our belief in a caring and just existence.
Every hour of every day a new tear is shed as something horrific happens on planet earth. 

Where are the blessings? 

We do not know why bad things happen to good people. As parents, children of aging parents, as tenants of this earth we can remember that underneath dark clouds the sun is still shining. We all must stop to look for the good to come out of a bad situation. 

So what good comes from a child dying at three or when a elderly family member passes at sixty, or one hundred?

Do these tragedies cause you to reexamine your life? 

• Have you taken time to reevaluate your life? 
• How do you feel and handle when you hear about a family member who is sick? 

We can redeem these tragedies from meaninglessness by imposing our meaning on them.

• What about when you read about a “friend” on social media? 
• Was it easier to once a week to pick up the newspaper and read the obituary page?
• What should our response be to innocent suffering for which there is no good purpose?

Above all should we realize that “bad things that happen to us in our lives do not have a meaning when they happen to us. They do not happen for any good reason….”  However, we can give them a meaning. 

Everyone asks the question:  "Why, do bad things happen?" 

The philosophers, theologians, butchers, bakers and candlestick-makers - No one really answers it.