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.