Tuesday, January 22, 2013

disabilities, life with them

I usually blog about baby and child loss, and life after, but today, I wanted to talk a little bit about life after loss with disabilities. 

It took me many years to admit I had a "disability... much less disabilities."  And to this day I get mad when I hear the word "handicapped."  Seriously, I just do. 

Me, handicapped?  Yes, yes I am.

I wasn't always like this, you know disabled and all. 

I was completely healthy until I went into labor with my second son.  And that time, those moments changed my life forever.  That time left me without my son and without my health, for my lifetime.

I remember applying for a "temporary" handicapped parking tag, you know the one you can hang on your mirror.  I was okay with doing that, because it was temporary, right?  It even had an expiration date on it!  YAY!  When it expired, I would be not handicapped anymore, right?


It would be then I was asked to get a "permanent" handicapped tag... and it would be then I said "NO!"  I haven't gotten one since. 

I remember going into the handicap stall at a bathroom and when I walked out got drilled by a lady telling me that stall was for those that "needed" it...

I needed it, she just couldn't "see" my disability.

Think twice before you ever assume someone is or is not in need of that handicap position.

Okay back to that bathroom story real quick, so I did yank my catheter out of  my purse and practically shoved it in that woman's face to let her know I obviously was in the "right" stall and that she was way out of line... she apologized and left quickly.  Hmmmm... wonder why? 

Now, to the rest of the story.

Lately I have been really frustrated with life, just life after such loss.  It is hard, really hard.  And coupled together with the loss of my son, it doesn't seem to get easier, but with God's grace, I get through every day.

I am well aware of how blessed I am, you can refer to my blog yesterday in regards to that!

But today, just wanted to reach those that I don't have the "connections" with through social media.

Those out there that suffer with a disability(ies) like me. 

Who are you?  Where are you?  I wonder do you get frustrated as I do?  But with the same breath thank the Lord for life, even as it is?

I mean, real life, real life with injuries stinks.
Like the concern/ worry/ aggravation I have every month of running out of catheters.  I cannot pee for free and that always weighs on my mind. 

200 catheters are what I am "allowed."  And apparently, I am only supposed to use 4-6 of them a day... well, they obviously didn't know me before my injury!  I have always been the pee baby!  Always!

I have to closely monitor the amounts of liquid I intake because I know that the more I drink, the more I have to pee...  the more catheters I use... the sooner I run out!

You may be thinking omgosh, TMI here, but I promise there is a point to all of this!  Keep reading!

WHY oh WHY can the insurance companies or the government tell me or anyone else how many catheters we can use?  I mean, really?  Do they think I am going to black market them or something?

Geez, it's a never ending battle.  Every month the struggle on the phones with the people on the other end asking me are you sure you need so many?  DUH!  I almost cannot tolerate the conversations.  Okay, okay sometimes I haven't tolerated them so well.  But...

Anywho...!!!  Then there's that concern if something happens, you know like a natural disaster or something... hmmm, like a hurricane or something!  If I am in a place where there are no catheters... I may be the only one checking in on a plane with 120 catheters for 3 days, but anything can happen, don't we know that?  When we traveled to the Bahamas, I carried an entire suitcase of catheters.  I mean who knew what would happen as we were travelling... or if we would be delayed.

There is the really raw part of disabilities such as these things that perhaps no one gives much thought to, unless you are a care giver or the one with the disability.  These things are real, and they don't go away.

When you rely on health care to LIVE not just survive, there is a great shift!  I promise!

I know many have experienced things as I am talking about, and that is why I am talking about them.

I look at so many young people with visible disabilities and imagine how life is for them... the daily tasks, the medical supplies, medicines and I also think about their caregivers.  And then I look around at our veterans and elders with visible disabilities, such as my dad, and it makes me more determined to want to not park in that space so that it will be available for them! 

I also think that my pride, yes I said it, my pride won't give in to the handicap word.  So if I have pride, why would I be writing this?  See, I am working on my pride!  I am working on humility in this disability.  I am trying to take this and turn it around.  There is nothing wrong with the word handicapped, there is nothing wrong with being handicapped... nothing.  I am handicapped.  I am living with major disablities but that doesn't handicap me from helping others and wanting to try my best to live, as I know it doesn't so many others as well.

This is where inspiration comes from, like the couple that had their first dance (blog post yesterday) as he was in a wheelchair!  I get so taken back by obstacles people overcome and I want to do that too!  I want to overcome every obstacle that I will face, as I have already overcome many.  I want to inspire others to do the same too!

I want to encourage the caregivers! I know it is hard!  I have seen my husband care for me and my mom beside my father's side for years!  You are so special!  You are appreciated and loved!

I want to encourage those of you with disabilities... if you struggle like me, don't give up!  Find something everyday to motivate you to help others.  In that, you will be helped! 

I am not sure how you are injured, what caused your disability or if you don't like the "h" word either, but I know life is hard when you are merely trying to live life the best to your ability after tragedy comes and takes what once was yours... strips it all away and offers you nothing in return but 200 catheters a month and a permanent handicapped tag! 

I will tell you that my mom (she loves yard sales) and she was at a yard sale last year and a woman was selling a large bag of male catheters.... (WHAT?)  yes, I said that... and she told the lady about me and the lady gave her that bag... well, when my mom handed it to me, I laughed a little and almost cried a little but was grateful I would have a "stash" to put away, you know for a hurricane or something... well, since my supply of 200 a month have run short every month, I have been using that stash... gasp, of male catheters from a yard sale!  Well, if that didn't just take my pride and knock it all the way down, I am not sure what will!  I even told my doctor with tears streaming down my face that this is what I was having to use until the insurance company would ship my order out... it just doesn't make sense to me, at all!  BUT I will say that those male catheters (please know they were still wrapped in medical sterile packaging! so no freak outs on me, okay?)  LOL!  were indeed a huge, huge FREE blessing!  That lady had no idea how blessed I was to have those in supply!  Today, I wait on my order, and today, I used the very last one of the yard sale catheters!  God's timing is pretty good!  Yes?

Now I anxiously await the arrival of my medical supplies, and pray to God for another blessing of catheters to have for when my supply is running out!  It is crazy that this is even an issue.  Crazy.

SO, see, people, I look like I have it all together on the outside... but in my purse I have been carrying male catheters from a yard sale because my insurance won't cover any more! 

If you can relate to anything on this post and have had some really bad days or frustrating times with your life and health care, I understand!  And I send to you all a great big hug! 

And please take the following advice and pass it on... If you ever see someone come out of a handicap stall that doesn't appear to be handicapped, be KIND to them!  You never ever know if they have yard sale catheters in their handbag! 

Have a beautiful day and as that sweet little girl said that suffers from progeria, "Be FABULOUS!"  I plan to! 


Monday, January 21, 2013

being sick and fabulous!

Friday my voice started to leave me and by the evening, I could only whisper.  I get seasonal laryngitis and apparently, tis' the season.

So, I grabbed my roll of tissue paper, my lip saver and detox oil and hunkered down for the night.  Who knew today I would still be beside my tissue paper, my lip saver and detox oil?  Whew, I have a yucky cold.

I have managed to be out of bed very little this weekend due to the fatigue and symptoms I am having.  Ugh, I just feel ugh.

I have been able to talk today a little bit, but when I talk for over a minute or two, I cough... and cough... so silence is still golden, so to speak, or not! 

I was telling my sister earlier I think this is the worst cold I have ever gotten.  But truth is, I really just don't remember having colds.  Or being acutely sick with the flu, or anything else.  I know I get sick, I know I get colds, but the one thing that makes it all so "un-memorable" is that these things go away, and my permanent injuries do not... so everything else I battle seems so unforgettable and small.  Everything.  Ah, I just have a cold!  In a week, I will be over it!  I sure wish I could say that about the rest of my physical ailments!  But... anyway.

I have literally had some serious silence over the weekend, needing more rest than usual and not wanting my kids to get this yucky cold, so I have reclused in my room while life around me has taken place.  Thank God for a wonderful husband that takes such awesome care of my boys and me!  And for  family that always is there to help!  Always! 

I have to tell you that on Friday night, night one of my 'silence,' I watched 20/20.  Wow, talk about leaving an impression on my heart.

Barbara Walters was interviewing precious children with the disease, progeria.  Suddenly, all that I had, all of my injuries down to my snotty nose and lack of voice didn't mattter, at all!  I am very aware how blessed I am and always brought to my knees when I see children who are suffering.  Watching these little girls and their  parents caused many emotions for me.  Many.  I wanted to change the channel, but I couldn't.  This was reality, and I wanted to  learn more about the reality that these families face daily.  I was completely inspired at the smiles on the faces of these children and encouraged to see the hope the parents held within.  I pray for progress in treatment for this awful disease.  One of the little girls simply wanted real hair...  I thought, I want her to have real hair too!  And as parents of healthy children, we take great delight in providing what our children want when we can... but these parents can't give her what she wants...real hair.  The pain in that alone is overwhelming.  One of the little girls ended her interview with saying "Don't let anything ruin your life."  Wow.  And her goal was to just "be fabulous!" 

As if the first segment of the show didn't have me adding to my pile of tissue, the second segment aired.  It told of a young couple marrying after he had been paralyzed in an accident.  They wanted to have a special first dance at their wedding and it showed the couple, along with many others in wheelchairs dancing to beautiful music!  I felt like I was on inspirational overload... literally.

The determination this couple had, the courage it took to dance after the tragedy, I could feel as I watched the story unfold and their wedding guests floored when the music started to play! 

I started thinking about the future for my health in regards to the "migration" of my injuries and I became overwhelmed at the very thought of being in a wheelchair, which was the prediction for me at five years after injury.  This is year eight.  Eight.  I knew in my heart at that instant, if I were in a chair at five years, or eight or twenty post injury, I would not be alone.  RW would be there to push me, love me and dance with me, even once the music stopped.

In that moment I was completely humbled.  I was grateful for healthy children, I was grateful for my husband, I was grateful for these injured legs and feet... I was absolutely grateful I learned to dance again after tragedy and even more determined to keep dancing!

Though the amounts of tissue have been really grand lately here, and the cold is lingering like crazy, I know it will go away.  I will recover and forget I ever had this cold, again.  I will forget about the lack of sleep from coughing and sneezing, but I will never forget the lesson I learned while being silent.  I will never forget the words from that precious little girl... "Don't let anything ruin your life... and be fabulous!"

I think I will take her up on her advice!  :)  Maybe you should too! 

Monday, January 14, 2013

seeking the good...

It's been a while since I have been on the computer to write... not because I haven't had anything to say, but perhaps because I have had to filter it out! 

The last couple of weeks have been hard to say the least for many of our friends and family.  I mean there have been some really bad days!  Know what I mean, some really tough days!

Both mentally and physically, these weeks have challenged me.  I had two options, stop or keep going.  These weeks have given me an ultimatum for how this too would pass.  They have challenged me to push harder, to meditate on the promises that God has given to us over and over and to just not quit!

I am fully aware that quitting would be a whole lot easier than persevering!  That I know to be true!  But quitting wouldn't lead me to where I need to go.  And I must get to where I am going!

I have relived Matthew's death, his funeral services over and over in my head and heart so much lately.  I recall the moment my husband drove me to the cemetery (and I was so sick in that moment, physically) to look at the little piece of ground reserved for Matthew.... WHY, WHY, WHY was I there?  Well, I had to approve of the place that my son's body would be laid to rest!  That is so surreal to me... all of it is... still!

I don't remember the drive there, I don't remember RW ever asking me about it, I don't remember anything but walking to that place and saying yes.  Yes this would be an okay spot! 
BUT what I say now is NOOOOOOOOOOOOOOOOOO!  I can honestly say I have not the slightest idea of what I was doing, what I was thinking or what was happening to me or what had even happened to my baby.  How did I get there?

I wasn't present enough physically or emotionally to understand my baby was gone.  I just have flashes of the moments that take my breath away.  That is one of them.

How do you pick a place for your baby?  How do  you find the perfect place?  The perfect place would have been in my arms and in our home... not out there.

"There is no longer walk than to walk the path a mother has to take to bury her child. And no path more frequently visited, whether on foot or in her heart or mind, the path always lies deep within her soul." LCW ~ "Facets of Life ~ What I Didn't Expect When I was Expecting"

I get so sick when I know that mommies and daddies every day are having to take that walk... and it makes me so sad... I know what comes next and that makes me even sadder. 

One of my friends went to the cemetery with me around Christmas time and we were talking...she is going through some touch challenges as well and I stopped what I was doing (weeding the gravesite) and I looked at her and said, "Rest assured that what you are going through today will be different next year... your circumstances will change and next year at this time, your life will  be different.  You will be in a new place in life... BUT I will still be HERE!  I will still be at the cemetery doing exactly what we are doing today." 

That's what happens when you lose a child... it never changes.  And year after year, life goes on, new things come and go, changes are in place all around us as we still stand in the same place, the place that holds what we cannot.  With great hope I embrace the change for good in my friends and families lives... and I embrace the change that will lead to better days.  And with great understanding I know one thing that will never change in my life.  And that is loss.  And next year you will find me at the very same place I was this year...as I will be the rest of my life.

When so much in the world is going bad, sometimes you just long for some good... even if it just a little tiny piece of good.  Good for your neighbors, good for your friends and family... and good for you. 

So I seek the good.  Today, I seek the good.

Today, I can say I haven't given up... and that is good.
Today, I have a roof over my head... and that is good.
Today, I have family and that is really, really good!
Today, I have a greater appreciation for life than I ever have, and that is good.
Today, is one day closer to seeing Matthew, and that is GREAT!

I hope you will seek the good today!