Sunday, August 19, 2018

No Rest for the Weary



"So, who helps you out in the home?"  The doctor asks this question and looks at me expectantly.

It's a question I'm used to hearing.  It's one I get asked at every appointment, every in home visit, and at least every 12 seconds when we stay in the hospital.  I always answer the same way.

"My husband helps when he's home.  My son pitches in and does well above and beyond his call of duty and when my parents stay they help out around the house with odds and ends."  I end with a bright smile but I know what's coming.

"But what about nursing care?  Who comes for that?  Do you have any help?  This is an exhausting and demanding job.  Your daughter is 24/7 care.  Plus I see in the records your son has disabilities as well.  You must be so tired and worn out.  Are you taking care of yourself?"   Looks of pity and compassion often follow.  Sometimes I get a hug or a pat on the arm.  Then they wait for my answers on why my magic wand hasn't poofed me up a service staff.

In my state (Virginia) there are waivers.  Cary Lynn is qualified for nursing.  The problem is we are at the bottom of the barrel and on a wait list so long it is a very real fact that my child may pass away before we receive help that may actually help us.  Pay for non skilled attendant help is $9.22 an hour.  No overtime, no benefits, and we are not allowed to add any additional income.  Turnover is high and retaining people is difficult.  The attendant cannot give medicines, drive, and other various restrictions.  Pay for skilled nursing is still low and you are at the mercy of an agency to find (or pretend to find) you a nurse.  I'm on the waitlist as we speak for six agencies.  It would have been eight but one agency told me that they don't work with her waiver because there is no money involved for them and the other agency told me I would be better off putting her someplace since we would be lucky to find any help where we lived.

I wish I could say because I live in the sticks of Virginia this is a unique problem and if I moved to a more populated location it would be resolved.  But it's not.  True, where I live doesn't make things easy but trying to make a living off of $9.22 an hour with no benefits is hard.  Turnover is high and interest is low.  This is a problem that is happening everywhere.

We have had help from the medical community and Noah's Children.  They call agencies for us and advocate.  Two hospitals have put in nursing orders and called my list.  They let me know they are fighting too.  I'm grateful, but not hopeful.  I gave up hope in finding help years ago.  It's easier not to become upset and rattled when you stop hoping.

Not having what you need can impact other ways of life.  I'm not able to work anymore, not because I don't want to.  I miss adults.  I had a fantastic job and loved what I did.  We make it work.  I also miss dates and alone time with my husband. This weekend was supposed to be a get away for two.  Guess who ended up needing to see a gi/motility specialist?  I think my last date night with my husband was about two years ago.  I miss dressing up and going out.  I also don't always go get the medical care I need.  Things change.

I'm also not writing this so everyone feels sorry for us.  That's not what I want at all.  Nor am I this amazing super human who has lived off of bad hospital coffee for years.  I don't want pity.  What I want is change.  If things don't change people like my daughter will continue to be treated like a sin and an abomination from the dark ages to be carted off to an institution. 


My kids are vibrant.  They have fought and will continue to fight.  We've had a few setbacks and scares recently that we are still processing.  But part of what we have learned from this is that we are going to have to fight harder for changes and for my children's rights. Letters have been sent, calls have been made, and we are ready to speak out more loudly than ever.  Change doesn't happen with a magic wave of a wand.  It takes time, hard work, and lots of pushing. I won't stop because the stakes are too high and loosing isn't an option.




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I'm a mother, advocate and blogger.  This blog appears on my blog site as well but it's too important not to continue sharing.  Please follow me at https://manykindsoffamilies.com/

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  70. DR. GREAT IS THE BEST SPELL CASTER ONLINE WHO RESTORED MY BROKEN RELATIONSHIP AND I HIGHLY RECOMMENDS DR. GREAT TO ANYONE IN NEED OF HELP! 

    My husband left me for another woman 3 months ago and ever since then my life have been filled with pains sorrow and heart break because he was my first love whom i have spent my entire life with. A friend of mine told me he saw some testimonies of a spell caster called Dr Great that he can bring back lover within some few days, i laugh it out and said i am not interested but because of the love my friend had for me, she consulted the great spell caster on my behalf and to my greatest surprise after 2 days my husband called me for the very first time after three months that he is missing me and that he is so sorry for every thing he made me went through.He came back to me and now we are happy together. I still can’t believe it, because it highly unbelievable. Thank you Dr.Great for bringing back my lover and also to my lovely friend who interceded on my behalf, for any one who might need the help of this great spell caster here is the email address:

    infinitylovespell@yahoo.com  or  infinitylovespell@gmail.com

    you can also call him or add him on Whats-app:+2348118829899 

    View his blog  http://infinitylovespell1.blogspot.com

    ReplyDelete
  71. DR. GREAT IS THE BEST SPELL CASTER ONLINE WHO RESTORED MY BROKEN RELATIONSHIP AND I HIGHLY RECOMMENDS DR. GREAT TO ANYONE IN NEED OF HELP! 

    My husband left me for another woman 3 months ago and ever since then my life have been filled with pains sorrow and heart break because he was my first love whom i have spent my entire life with. A friend of mine told me he saw some testimonies of a spell caster called Dr Great that he can bring back lover within some few days, i laugh it out and said i am not interested but because of the love my friend had for me, she consulted the great spell caster on my behalf and to my greatest surprise after 2 days my husband called me for the very first time after three months that he is missing me and that he is so sorry for every thing he made me went through.He came back to me and now we are happy together. I still can’t believe it, because it highly unbelievable. Thank you Dr.Great for bringing back my lover and also to my lovely friend who interceded on my behalf, for any one who might need the help of this great spell caster here is the email address:

    infinitylovespell@yahoo.com  or  infinitylovespell@gmail.com

    you can also call him or add him on Whats-app:+2348118829899 

    View his blog  http://infinitylovespell1.blogspot.com

    ReplyDelete
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  73. Thank you Dr Great for your genuine spells. This is really incredible, and I have never experienced anything like this in my life. Before i came in contact with Dr Great, i have tried every possible means that i could to get my wife back, but i actually came to realize that nothing was working out for me, and that my wife had developed lot of hatred for me.. I thought there was no hope to reunite with my ex wife and kids. But when i read good reviews about Dr Great work , i decided to give it a try and i did everything that he instructed me and i trusted in him and followed his instructions just as he have guaranteed me in 28 hours, and that was exactly when my wife called me.. We are more contented now than ever. Everything looks perfect and so natural! Thank you so much for your authentic and indisputable spells. Thank you Dr Great for your help. If you need help in your marriage of broken relationship, contact Dr Great right now for urgent help

    Email: infinitylovespell@gmail.com OR infinitylovespell@yahoo.com

    View his blog  http://infinitylovespell1.blogspot.com

    Call/WhatsApp him: +2348118829899

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  74. kamakhya temple black magic The Black magic of Kamakhya temple . The blog post seems to be superstious in this era . In the 21st centuary we don’t believe in all these terms Black m.agic and Vashikaran . But we cant turn our eyes from this . The blog post is all concerned about the origin and belief about the Black magic of Kamakhya Temple .

    ReplyDelete
  75. My husband and I have been married for about 7 yrs now. We were happily married with two kids, a boy and a girl. 3 months ago, I started to notice some strange behavior from him and a few weeks later I found out that my husband is seeing someone. He started coming home late from work, he hardly care about me or the kids anymore, Sometimes he goes out and doesn't even come back home for about 2-3 days. I did all I could to rectify this problem but all to no avail. I became very worried and needed help. As I was browsing through the Internet one day, I came across a website that suggested that Dr Great can help solve marital problems, restore broken relationships and so on. So, I felt I should give him a try. I contacted him and he did a spell for me. Two days later, my husband came to me and apologized for the wrongs he did and promise never to do it again. Ever since then, everything has returned back to normal. I and my family are living together happily again.. All thanks to Dr Great . If you need a spell caster that can cast a spell that truly works, I suggest you contact him. He will not disappoint you. This is his E-mail: 

    infinitylovespell@gmail.com or infinitylovespell@yahoo.com

    WhatsApp +2348118829899

    Blog http://infinitylovespell1.blogspot.com

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