Monday, April 23, 2012

Purpose to Thrive

Life is full of questions, there's no doubt about that.  Some questions have answers that are simple, sometimes the questions have answers that you must seek out...And then, there are times when your questions have no answer at all.

I am a HUGE believer in PURPOSE.  Living with a purpose, speaking with a purpose, writing with purpose - and believing there is, if not meaning, an opportunity behind the challenges we face. An opportunity for growth, for education, for stronger relationships and faith, an opportunity to come out better on the other side, even if the other side is a place we aren't yet ready to face.

I have learned over the last 4 years, since I began "Thriving with NF", is that if you don't have a purpose, Life can be REALLY hard.  REALLY REALLY hard.

Finding your purpose isn't easy, and it isn't always cut and dry. It took me 34 years to figure out why I was here...for me to accept what NF was doing in my life, and the lives of my kids. Watching doctor after doctor dismiss my concerns and questions pushed me to my purpose, out of desperation, to a degree, and out of anger...out of a mother's love.

My purpose is still evolving, as I find myself drawn to speak to groups beyond Neurofibromatosis - to encourage families facing all sorts of genetic crises to Thrive. To speak to doctors and nurses - both educating and encouraging as they treat NF patients and their families. And still, closer to home, continue to evolve as a mom and a wife as my family matures and faces new challenges each day. Thriving, as a way of live, becomes a bigger, more important, and more rewarding task with each sunrise.

That may sound like a lot of work, a lot of responsibility. It is, but it provides two very important things. Diversion from depression, for one. It's easy to sit and feel sorry for yourself when you lack a purpose. But when you know what you want to be doing, you can be too busy doing it to focus on the negative. Doesn't mean ignoring the bad, just not letting it be the core of your being, the center of each day, each waking thought.

Secondly, it provides a self-perpetuating reward knowing I am, in some small way, helping others with their challenges, whether it's answering questions for a mom who's found out their child has NF, or sending out a batch of books, or just reposting a funny or uplifting quote to my friends on Facebook. 

If you haven't found your purpose yet, if you're hiding from life, hiding from NF, hiding, maybe, even from yourself, you deserve better. The people around you deserve better. There are people you don't even know whose life you can touch who deserve better. It doesn't mean doing what I've chosen to do, but it means doing something. It doesn't even mean doing something related to NF, or the challenges in your life. That is what MY purpose has become - but it doesn't have to be yours.

It doesn't even mean you have to be right the first time around when you choose your purpose (my first purpose was getting married and having kids - I had to do it (marriage) twice and (kids) six times before deciding it was time to change the purpose! I've kept the husband and the kids, though, and changed my focus for my relationships with them and the world as a whole. Try something, and if it doesn't work, try something else!

Your purpose could be working with kids, or getting involved in your community, or even just changing careers to something you actually enjoy. Maybe it's building a house out of recycled aluminum cans. I don't know. I just know your life will be more Thriving WITH one, than without.

What do you think your purpose in life is? What do you want it to be? Let me know below - would love to hear what you'd love to be doing with the rest of your life! :)

Thrive on! 

Wednesday, April 18, 2012


Monday, April 16, 2012

Disability--Things You Should Know!

Two years ago, when I sat down to apply for disability for my oldest child, who had JUST been diagnosed with a rare NF tumor, I thought I was doing exactly what I needed to do to ensure her the health insurance that she so desperately needed...

She qualified...NO doubt about it...But I sure wish I knew the "ins and outs" of what it would mean, to have and KEEP disability. Which is why...TAdaaaaa, I am writing this blog post! 

Things to know BEFORE you apply for disability

The first thing you should realize when you are applying for disability for yourself or your child is the amount of time it takes to #1 Fill out the applications,  #2 Get your decision back from the state.

---It takes A LOT of time to fill the application out (if you are doing it correctly, that is)  An insider tip from a friend of mine who works in the determination dpt at the Social Security Office, in another state tells me that EVERY SINGLE LINE in the application MUST be filled out, even if the question does not apply to you (or your child) Putting "Not Applicable" in the blank spaces is better than leaving it blank.

---CONTACT NUMBERS for Doctors that you or your child have seen SPECIFICALLY related to your conditions is a MUST!  Make sure the numbers/addresses are CURRENT contact numbers!

It took me a total of about 3 hours to complete the process (that is 3 hours of FOCUSED time)--Which seems daunting, but ended up being very worth it...Submitting  a complete and accurate application will increase your chances for a "fast" approval.

This is NOT a process you want to rush through...If you have ANY medical records that pertain directly to the condition that is disabling you, make copies, and send them in with your application.

After you finish and send in your application...The wait can be really hard to deal with.  It took our family 3 months, before we heard ANYTHING from the Social Security Office.  (Which, from the many people I have spoken with is considered pretty good!)

Expect a LOT of questions, after the ball starts rolling.  When we finally got our call, I had to explain--in detail--what Neurofibromatosis was (even though, in my application, I went into great detail about this condition)  

I was asked almost every question that was on the application...And had to explain how the complications I listed, impaired my daughter's ability to live a normal life.  

***Be patient with this process***
It's very easy to become frustrated when trying to explain your situation to someone who doesn't get it....The person on the other end of the call is just trying to do their job...
Being patient and thorough will make things go a lot smoother.

After the first call, it took another 2 months before we heard anything...This felt like a lifetime!  

You may think that "nothing" is happening during this wait time...But rest assured, A LOT is happening!  This is when Social Security is checking all of the medical information and contacting the doctors.  You may receive a few phone calls during this time...Or you may be asked to go back to the doctor for further testing.

For my daughter....She received a full Neuro-Psych evaluation during this time.  

A neuropsychological evaluation (assessment) is a form of psychological testing that examines a child's mental abilities as they may be related to neurologic or other medical disorders, mental health difficulties, or problems at school. 
The primary focus of a neuropsychological evaluation is the child's cognitive functioning, considering abilities such as intelligence, language, visual-motor skills, memory, attention and organizational skills. Behavior and emotional factors are also considered as they affect the child's performance, but they are not the main focus of evaluation.
The primary goal of a neuropsychological evaluation is to understand a child's strengths and weaknesses, and with this knowledge to assist parents, physicians, and others working with the child at school and in other settings.
---This test was a crucial part in our approval process---

***Some Other Important 'NEED to KNOWS'!***
---Just like ANY Government program, Social Security Disability is income restricted.
What does THAT mean?
***This simply means that in order to "qualify", you have to meet certain income requirements.  This includes knowledge of assets such as Pensions, Life Insurance and strict reporting of earned income.  go to for more information
These "Assets" can be the determining factor in your case...Which really made angry.  I have a good friend, who has a child with NF1, just like Bailey.  This child is definitely more disabled and more limited than Bailey, but his family was DENIED disability, based on the fact, the Dad had a significant Life Insurance policy.
This family's assets, worked against them, which just seems so wrong!  The mom, even talked to me about the possibility of divorcing her husband and live in separate households, just to qualify their child for disability!  What's wrong with this world?!?
---For our family, the income limitations have been EXTREMELY difficult to live by, but the benefits in knowing that the health care is there has been worth it. 
This is NOT optional!  You MUST report ANY changes to your income or household within 7 days.  Not doing so could result in the SS folks disqualifying you.

Also...Every family is different, every situation is unique, so it is important to ask questions if you want to know more about something...

I am happy to answer any questions that you may have about applying, qualifying and keeping Disability...Reply in the comments and I will answer as quickly as I can.

There With Care

This past week 'There With Care' sent out volunteers to help families with a "Spring Clean-Up"...I was immediately impressed with this group who simply googled "Volunteer Opportunities in Colorado" and found  this wonderful organization!

They raked 10 bags of leaves and garbage from around my home...and kept asking for more to do!  I just LOVE the heart of a giver!

My family would like to say THANK YOU for spending your day giving to others!  You unselfishly gave of your time, to help my family-- and that to me, is something words could never fully express how truly grateful we are!


UPDATE On MY Yard Project

If I would have realized how much of a difference removing these ugly bushes  would have made...I would have taken more "before" pics....But with this pic, you can kinda get the idea.

2 weeks later.....
I have raked...and raked...and raked

Today I planted grass seed and dug a planter around the tree.  In a few more weeks, I'm hoping the grass seed will produce a nice - healthy blanket of grass.

Tuesday, April 10, 2012

StarLight Foundation!

I can't say enough good things, about the organizations that have come into my family's life since the diagnosis of Neurofibromatosis.  We have been so blessed by these charities and non-profits that words cannot possibly express how truly grateful we are!

Last night, our family was invited to a Denver Nuggets game, 
thanks to the awesomeness of the Starlight Foundation!

The kids were invited to "High Five" the players as they went onto the court...Riker says, 
"Wow basketball players have really big hands!"

We sat courtside during the practice and pre-game --

When we got to our seats - we settled in to watch an amazing game!  We do the people who have had experiences with hardship of any kind, that events like this don't come around very often.  

It's organizations like Starlight, that understand how important "feeling normal" is to families...And for that OUR family would like to say THANK YOU!  Thank you for the thoughtfulness, and kindness you show families, who truly need it. 


Sunday, April 8, 2012

Happy Easter!

For God so loved the world, that He gave His only begotten Son, that whoever believes in Him should not perish, but have eternal life. For God did not send the Son into the world to judge the world, but that the world should be saved through Him. John 3:16-17

 Ha Ha! Bucket Head!

 Brookie Bucket Head!

 The Hunt is ON!

 The Loot!

 Dying Eggs!

 At Home Egg Hunt!

Early Morning Easter Baskets! 

Happy Easter-
God Bless

Tuesday, April 3, 2012

Life Gone...But Not Forgotten!

She was so excited about planning her families Make-A-Wish to Disney World in just a couple of weeks!  "We'll look for Bailey's star!" she told me.

We had become pretty close friends over the past year...Neurofibromatosis, the string that connected us.  I am not sure if NF is what took my friend....Or possibly the complications that can obviously arise from it...But I miss her.

Her death hit me hard.  Harder than I thought any death of a friend could.  Maybe because it hit so close to home.  (An NF mother, MY age...who was losing weight and trying to become healthier) Or maybe it's just that I don't think death is very fair sometimes.  I mean in all honesty...NO ONE deserves to die....But the person in particular left this Earth WAY too soon. (In MY opinion)

Kambi, your kind words that you spoke to me, just the day before you left this Earth are captured in my heart forever.

For some reason, I thought this blog post would be longer....Like I had so much more to say....But I just can't seem to get the words out.

You are missed Kambi.

Thrive On!