Our journey begins . . .

Tomorrow we embark on a journey.  A very important one!

It’s a journey that I never  envisioned going on.

But, when I really think about it,  that’s how a lot of life is — filled with unexpected journeys.

While I didn’t expect to be on this journey, I am relieved and so very grateful that we are taking it.

If you’re still with me, at this point, you’re probably asking, “WHAT JOURNEY? WHAT ARE YOU TALKING ABOUT???”

Tomorrow is the day we fly to Philadelphia in preparation for our meeting next week with Canine Partners for Life regarding a Dysautonomia Service Dog for Lukah!

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If you had asked me 18 months ago what I would be doing on a Saturday in late April, I would have answered, “Watching my daughter dominate third base in a high school softball game.”

Fast forward 18 months and that is not happening.

If you had asked me a year ago what I would be doing on a Saturday in late April, I would have answered, “Hopefully watching my daughter dominate third base in a high school softball game.”

Fast forward a year and that is not happening.

If you had asked six months ago what I would be doing on a Saturday in late April, I would have answered, “Well I won’t be watching my daughter play softball.  Instead I will be worrying about her having another seizure or pass out, and praying that iF she does, her guardian angels are watching her to ensure her safety and not another injury.”

Well, that is still happening. 😦

But I’m hoping, after this trip, I will at least see a point in time when I won’t have to worry QUITE as much.

And that will be because she will have someone else watching over her — a  guardian angel. The angel won’t have glorious wings or carry a harp though.  Instead, it will have a glorious shaggy coat and will carry a “Don’t pet me . . . I’m working!” sign as her angel just happens to be a dog!

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While I never envisioned things getting to the point that we would be starting this journey, I am so incredibly grateful that this path is there for us to follow.

Obtaining a service dog for Lukah will provide so much more independence for her. Not only will she be able to go on more outings on her own again, it will also bring back her confidence, because right now, she lives a life of daily fear of when she will next pass out or have a seizure.

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“Will it happen in front of a stadium-full of people when I go to watch the track meet?  Will it happen when I am at the mall? Oh gosh what if it happens at the One Direction concert this summer?”

Put yourself in her shoes for one day and imagine how crippling the fear of not knowing would be.

This angel will bring back her peace of mind.

While our journey starts tomorrow, we are not on a fast track.

If approved, it will be 1-2 years before she actually gets her furry angel.

But a journey’s gotta start somewhere, right?

So tomorrow, as we board that plane to Philadelphia, I am asking you for a favor.  Please say a say a prayer for our important journey that is beginning. PLease pray that angels will oversee not only our physical journey to the city of Philadelphia and back, but also our metaphorical one — the journey that ends with a furry gaurdian angel in her arms.

And maybe a year from now, if you ask me what I would be doing on a Saturday in late April, I will be able to answer you, “Definitely NOT as worried about my daughter. Hey, in fact, maybe she and I and her guardian angel will go watch a softball game?”

Thanks for reading.

God Bless.

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3 thoughts on “Our journey begins . . .

  1. Hi just read your blog… Wondering how you are getting ivabradine in Canada. I have asked ,y specialist about going on this drug…

    Please email me at monshonday@gmail.com

    Take your prognosis from your dr with a grain of hope, faith and optimism. I have been living with dysautonomia for 10 years. The day it hit my heart rate went to 220 and stayed there… I have gon thru hard times, I won’t lie to you… But my heart rate has come down, the highest it seems to go now is115ish off my meds… That is a drop of 100bpm or so. Yes I have my bad days that occur when my immune system is challanged( when someone in the house is sick). I used to have to take meds to get up out of bed for my low blood pressure. It still does odd stuff,

    My message is whether you can see it or not, I have seen that my body is trying real hard to work at resetting itself… The progress is gradual and up and down.. It is not easy physically, emotionally, spiritually etc. but I can see progress. A few years ago my specialist said, that I should accept it as my new normal. I said to him no chance… Good thing I did not listen… I have progressed since then.

    Everyone has a different journey with this disorder, balancing meds in a hard thing in the beginning. As time goes by you will learn how your body works. There is always hope.

    Faith has helped me out big time…it has kept me going thru the difficult days, hours, minutes…

    Wishing you a good recovery towards a balanced autonomic system… It is a journey, and there are lots of amazing people with blogs to encourage nd educate you…

    Corrine

    • Hi Corrine. Sorry I am just seeing your comment. Lukah’s doctor wrote her a paper prescription for the ivabradine and then I just worked with a pharmacy in Canada to get it by mailing them the script. It was really easy. It took about 3 weeks to get the medicine from them was the only bad thing. I am sorry you battle dysautonomia, too. I am glad you are “learning” your body. Lukah’s doctor said she will learn hers too as she gets older and will know her triggers, etc. Infections are a big problem for her. When she has something as small as an ear infection it throws her autonomic system off so badly she is unable to sit up without passing out. So, I dread the germs coming into our house for her sake because her body can’t handle them. Dysautonomia is a beast that is for sure. Thanks for the kind words.

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