Jump!

A few days ago, my husband had me watch a video clip of a motivational speech by Steve Harvey of the Family Feud.  Steve Harvey video   He starts by saying that every successful person has one thing in common.  They have all jumped.  They took a leap of faith.  They realized what their God given gifts were and they jumped in head first.

I truly believe that when each of us enters this world, God blesses us with certain gifts and talents.  Some of us may have one, others may have 5 or 10.  Once we identify our gifts, we need to jump.  Steve Harvey said that the only way we can soar is to jump and pull the cord.  Once we do, we have to be determined to keep going through the doubt, rejection and pain.  Eventually we will come out on the winning side.

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Think about the inventors of the past and how far they had to jump to create the light bulb, the automobile, plastic, or Apple Computers.  One of the best biographies I have ever read is on Steve Jobs.  Where would we be right now if Bill Gates and Steve Jobs didn’t jump?  I wouldn’t be able to share my heart with you on my MacBook or even find a way to deliver it.  In reality, most of us are not as brilliant as Thomas Edison, Albert Einstein or Stephen Hawking, but we can make a bigger impact than we think.  It wasn’t smooth sailing even for the geniuses of our time.  They jumped, overcame and soared.

steve jobs quotes
steve jobs quotes
We are all more capable of making a positive impact than we realize.  My son, Christian, wanted to make a difference.  He wrote a good part of a spy novel but stopped when his disease started to accelerate.  He wasn’t able to join the football team or play basketball but he did play his clarinet until he didn’t have the strength to sit up and cope with the pain.  He spent the last 18 months of his life tilted back in his chair but he still hardly ever complained.  His courage and grace impacted everyone he came into contact with.

What about the rest of us?  What are we capable of?  I have come to realize that I have a knack for photography and writing.  My sister overcame great obstacles to earn her G.E.D., becoming a volunteer fire fighter and EMT and is now in the best shape of her life.  How many lives would have been lost if she never jumped?  I encourage you to watch this video and to believe that God fulfills all of his promises.  He wants us to soar.  At some point, we have to ask ourselves if we are living or simply existing.

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Despite the physical limitations of Duchenne Muscular Dystrophy, the boys earned their GED’s in 2012.
I can hardly think of a time when God did not get me through difficult times.  After we lost Christian, I felt like I was falling, skinning my knees and having my heart ripped out every single day.  It’s still not easy, I still have moments when the reality of his death practically knocks me down, but God has helped me up from day one.  Steve says that our parachute does not open right away.  It most certainly did not for me until recently and it didn’t for my sister either.  I am pretty sure that most olympic athletes skinned their knees many times.

I encourage you to jump.  Stay with it until you soar.  Believe in yourself because God does and I believe in you too.  Do it.  Jump!

 

Long Time No Post

I must admit I was a bit shocked when I saw how long it had been since my last blog post.  I have read in more that one place that we have to make time to do the things that matter or we will never do them.  We also must not wait until everything is perfect before we pursue our dreams.  Our lives are ever-changing but our dreams remain in our hearts.  I have a dream of writing a book about my sons and their daily battle with Duchenne Muscular Dystrophy.  A book that I hope will inspire people to donate to the MDA and reach out to families afflicted with devastating, neuromuscular diseases.

So much has changed since my last post.  After over 10 years of being a full-time caregiver for my sons, I am back at work.  Not just any place of employment but the very company that I left to care for my sons.  I feel tremendously blessed to be rehired.  Even with blessings, it’s easy to still experience moments of fear and doubt.  Questions circled in my mind such as wondering if I would remember everything.  There is also the social aspect of working outside of the home that I have been missing for far too long.  It has been fun seeing people who I haven’t seen in years, literally.  It has been difficult not seeing my son as much but this change enables us to be a healthier and happier family.

October 27th marked the one year anniversary since Christian passed away.  I honestly thought it would be beneficial for me to go to work and with this year being the first one, I didn’t know what to expect.  Let’s just say I had to go home.  Being with my family made the day easier to bear for all of us.  This fall has been painful.  As I have been watching the leaves turn and fall off of the trees and the sun shine at a different angle, I have been flashing back to our last few weeks with Christian.  The good Lord has given me the comfort and strength I need to keep putting one foot in front of the other.  One sign of the healing that has taken place over the last year is the little moments of joy that fill my heart at the most simple of things.  A squirrel greeted me on one of my courthouse runs with a mouthful of leaves.  A house finch called to me from under a car in the parking lot behind the treasurer’s office.  A pigeon greeted me above the door before I went inside.  The simplest of sights are the most beautiful.

A squirrel in Gibson Park years ago.
A squirrel in Gibson Park years ago.

I had to remind myself lately that going back to work full-time does not mean I have to stop pursuing my dreams.  We can always carve out a little time every day to write, play a song on the piano or take a 30 minute walk.  I would love to hear about your dreams and I will keep you posted on mine.  I have a piano that I would love to start playing again but with most things, I will need to take baby steps.  I read a blog post by Tsh Oxenreider (theartofsimple.net) about not setting goals too big or it sets us up to fail.  It’s far easier to exceed a goal that’s simpler and realistic.  Wise words!

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I will keep getting back up!

Drew patiently awaits his name being called to go back to see the lung doctor.
These critters have looked down on us every six months for as long as I can remember.
This wall hanging with the names of other patients is always a comfort to look at.
Drew is getting ready for his spirometry test with a plug over his nose.

Drew had his 6 month check up this morning with his heart and lung doctors.  We had to get an early start on things and jet across town by 8:30.   The sun was shining and we were in good spirits.  We expected to hear good news based on Drew’s energy level and overall well being.

Drew had his heart echo first.  The boys have been seeing Dr. Ruggerie since they were small, shortly after their diagnosis of Duchenne Muscular Dystrophy.  He treated Christian up until he passed last October.  Unfortunately, after less than a year after losing Christian, we found out today that Drew’s heart and lung function numbers have decreased.  We know how this disease progresses and have had this told to us in the past about Christian, but it still doesn’t prepare us or make it any easier.  The heart is a muscle and muscles in our chest help us to breathe.  Duchenne’s affects all of the muscles in the body.  It doesn’t pick and choose, doesn’t affect only the face, legs or hands.  At times, I think this disease is a monster.

Oh, sure, I could curl up in a ball and give up.  Yell.  Get mad.  I would rather get back up, dust myself off, and keep fighting for Christian, who I know would want me to keep fighting, for Drew, my husband, my mother and for all of the boys and families dealing with this devastating disease.

The more I see this disease affecting my son and my mother, and especially after losing Christian last October, the more I want to do something to help, educate people and keep fighting for a cure.  Okay.  Here it is.  I want to write a book.  This scares the crap out of me but I know it needs to be done, especially after I found out the telethon has been discontinued.  I don’t have a writing degree or any kind of education that pertains to writing a book but I have lived it.  I have seen my boys learn to walk but eventually lose that ability.  I have seen them fall,  I have heard the awful things other kids have said to them.  I have seen them go through the surgeries, humiliation, raw fear, pain and suffering.  I don’t know how to begin but writing in this blog and sharing my heart with all of you is the first step.  Thank you so much for reading my blog and walking with me on this journey.  This book needs to be written.

Skin cells

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Today I started writing in a brand new journal.  Even though I had a few pages left on my previous journal, I just had to start fresh in my new one.  I am certain that I am not the only one who is trying to figure out what my new year’s resolutions will be.  I want to call them goals instead.  When I think of resolutions, I think of someone wanting to lose weight, quit smoking or give up drinking coffee (over my dead body – hah!).

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I read an entry in my devotional, Faith in the Valley by Iyanla Vanzant, and it resonated with me.  She said that our skin cells, our hair and other parts of our body are not the same parts that we had a week ago, a month ago or a year ago.  Without our intervention, our physical bodies are ever-changing, not always the way we want them to either.  (I find more and more gray hairs every week.)  Iyanla said that one thing that does not change on it’s own is our mind.  Do we have the same attitude and do we have the same thoughts that we had years ago and have they held us back from the life we truly deserve to live?  In my case the answer is yes.  What if we decide to be more of who we are, take better care of ourselves, love ourselves and others, and express more kindness and gratitude instead?  Once we do these things, wouldn’t that make it easier to lose weight or eat healthier?  Maybe it’s better to start within.

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Today the sun was shining and I felt blessed to have a day with my family.  What are my hopes for 2014?  For my oldest son to be in less pain from his MD, that perhaps we will find good help with my sons and that we would love each other just a little more every day.  I hope to post more in my blog, read more books, do more crossword puzzles and listen to more great music on my new turntable.  I wish you all the very best life can offer in 2014!

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Never stop reaching for the sky!

Never stop reaching for the sky!

I’m baaack! I must admit, I was pretty shocked when I noticed how long it had been since I lasted posted. I convinced myself that I did not have time and did not need to write in my blog. It is amazing how if we tell ourselves something enough times, we will really start to believe it. A phrase I have seen many times states that “we become what we think about”. Our attitude really does make our world. It can make or break our day.

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I have recently joined the gym after wanting to go back for several years. It was humbling after my first workout. I ended up very sore and tired. With anything new, it’s easy to fall prey to fearful thoughts. I payed for an entire year up front and I have asked myself several times if that was a mistake. I have been in the same routine for so long that it has become a rut. I spent so many days at a time at home caregiving, cleaning etc. that when I actually did get out, I was a little shocked.

The truth is, I need the exercise, we all do. It keeps us strong and less prone to injury and combats depression and anxiety. I know it will improve my life so long as I keep on keeping on! As I continue on this journey, doors will open, opportunities will present themselves and the walls I have built up will begin to fall.

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