Pixie dust and prayers for our trip next week. Sorry kinda long, need to vent

[Hayden's Dad]

**UPDATE**
Well guys after many weeks here of he said she said, I'll get back to you and so forth and so on I finally got an answer from the big boss on whether I would be paid fo this or not. And the answer is that I have to take it as unpaid time. That's okay I am just glad I still have a job. Thank you all so much for all of your thoughts, prayers, pixie dust, kind words, and threats for my work they have all been very much appreciated. At least now I can keep all my time for this year so we can have more adventures with Hayden.

I am usually a very patient and understanding man. I have a long fuse that can burn for a long time, but I am coming to the end of my rope.
As most of you probably know my son Hayden was diagnosed earlier this year with a terminal neurological disease. The disease is usually terminal by the age of two. He is now 22 months old. Before he was born My wife and I started planning our first family trip to WDW since it is such a magical place for us. That trip is taking place next week. Once Hayden was diagnosed in Febuary of this year my family came together and with the help of generous donations from them and other friends, family, and complete strangers they were able to pay our way for all of us brothers and our families to go in May and it was a wonderful magical trip, but we still had our small family trip planned.

When Hayden was originally diagnosed I spoke to my manager at work, she said that our Regional manager said that any time I neede for Hayden would be fine, great. Now I didn't abuse it by no means, but there were a few things we wanted to do with Hayden in the time we had. Then my manager left the company and a new one has not been established yet so I spoke to my Regional to make sure everything was ok, he had no idea what I was talking about my mnager had never talked to him. We then discusse that if I needed additional time that I could take it off of next year or whatever, but it would be worked out. Well now he is gone and I have no manager, no regional manger and the person I am currently reporting to who originally knew what was going on is now telling me she doesn't remember any of it and she is not sure what we can do.

I found this out this morning, we leave for Disney on SUNDAY!! I told her that I would take it unpaid if need be but I couldn't change my plans now. She said she would make some phone calls and see what she could do and call me back later today.
On top of that we have been getting nothing but negative responses from our families (except for on eof my brother's he is very much for us going) Either they are worried about Hayden's health (which his nurse says he will be fine, an dif there is a problem we will be under Hospice care down there also) or about my job and that should be my top priority.

I refuse to sit around and wait for the inevitable staring at the same four walls day in and day out!! It is not fair to my wife who stays home with Hayden all day everyday, and it is not fair to Hayden!! We have to have small goals in place to give us something to look forward to! After Disney it will be Christmas after that it will be his birthday on the 10th of January.

Thank you for listening I needed to vent and have released some of my stress. Thank you for all the pixie dust and prayers you all have sent so far they have made an extrodinary difference in our lives.

[bleukarma]

I am so sorry you have to go through this extra stress with everything else going on. Worrying about your job is a major stress factor and to have that on top of a sick child has to be awful. I’m sending some pixie dust in hopes that everything works out and that you and your family have a magical trip next week!

[KylesMom]

You know what's most important in life - don't let anyone discourage you from taking this magical trip, Hayden's Dad. Know that our thoughts, prayers and pixie dust wishes are with you. Sending positive thoughts your way so that everything works itself out and that your departure day is trouble-free!

[ILoveLegos]

Go to Disney, enjoy the precious time with your son Hayden, do what's best for you and you family, ignore the naysayers. Best Wishes.

[ll MaJiK ll]

Do what feels right. You know what's best and I hope you have a splendid trip. Pixie dust and prayers coming to you.

[SurferStitch]

Your precious time with Hayden is what matters most now. Leave the stress behind, and you and your wife have a magical time in a magical place with him. Time spent together as a family is the most important thing.

Unless your supervisor (or whatever she is) is a horribly demonic person, the job will still be there when you get back. That should probably be the least of your worries.

The family will still be there when you get back, and they'll get over your trip with Hayden. He's your son, and you know what's best for the three of you. Again, no worries.

Go, have a magical time together, and make memories that will last forever. That's what matters.

[Tink&Goofy]

I think your priorities are COMPLETELY in the right place!! Spend that magical time with your child! Those are the memories that you will hold dear - Not the fact that you had bosses that didn't understand!

I hope you have a magical trip!

[RedheadWriter]

to you and your family.
You have your priorities in the right place.
Rachel

[biodtl]

I'm sorry you are having a hard time right now. I hope you have a wonderful trip. Regardless of what anyone tries to tell you, you'll never regret spending this time at WDW with your son.

Hopefully your family will come around and see that you are doing the right thing. I'm sure they mean well, but are speaking through their own stress and fear right now.

[faline]

I'm sorry you've run into this glitch. I hope this is all resolved and you are able to leave your work stresses behind for a wonderful time with your family!

[IloveDisney71]

I hate to hear that you are experiencing these problems. It is so sad that so many people place work over family! Go and enjoy your time with your little one and don't worry about what other people think.
Hospice is a wonderful organization and will be able to help you with any needs you have.
Here's some pixie dust and best wishes for a magical and memorable time!

[meldan98]

I'm so sorry you are going through this. This is the last thing you and your family need to deal with at this point. You and your family will be in my prayers.

Hopefully, your employer will grow a heart and will accomodate you.

Now, with my HR Hat on, does your company qualify for FMLA (Family Medical Leave Act), if not does your state have something to fill in the gap? You should be eligible for that kind of leave.

[thrillme]

I've been thinking about ya'll quite a bit. My prayers are with you.

Enjoy your trip. Enjoy your time with Hayden. Things have a way of working out.

I totally agree with you...you'll make yourself and your dear wife crazy just sitting waiting for the inevitable rather than actually LIVING.

[Jeff]

Terrible that you have this unexpected problem with work. I hope they work it out for you.

Go and make some great memories!
God bless you, your wife and your precious son.

[pdrlkr]

[LandFan]

Wow! I can't believe that she is giving you a hard time about this trip! I am guessing she doesn't have children of her own!

Do what you need to do. No one else is in your shoes (not even your family) and can remotely understand you and your wife's need for a little escape and fun while you can.

I hope this all gets straightened out and we still see you down there next week with smiles on your faces

Life is short - even shorter for some - take the time you have and run with it - make sure you will have no regrets.

See you soon!

Tara & Jason

[mttafire]

You know what's most important in life - don't let anyone discourage you from taking this magical trip, Hayden's Dad. Know that our thoughts, prayers and pixie dust wishes are with you. Sending positive thoughts your way so that everything works itself out and that your departure day is trouble-free!

I hope your trip is the most magical ever. I hope you all, especially your son has a wonderful time!
God Bless, Shawn

[Jasper]

My heart certainly goes out to you, your wife, and to little Hayden.

If you and your wife feel like this is the right thing to do then it IS the right thing to do. Don't let others influence your decisions where your child is concerned. The only opinions other than those of you and your wife's that should matter are those of your child's doctors. And since you say they are OK with going then I say do it.

As for your job, I have spent the better part of the last 15 years working in Human Resources and I can tell you that rules can and should be broken at times and this certainly sounds like one of those times. There are two other things you should think about when it comes to your job.

First is that if your company won't work with you at a time like this then is it really where you want to be working?

Second, many people that lose a small child report that after such a loss that it helps them clear their heads about it by completely changing everything in their life including their job. So maybe if you do lose your job on the other end of things it may actually be good for you.

When it is all said and done you have only yourself and your wife to consider so do what you think is right and let life take you where it will!

Good luck and best wishes!!

[Jenemmy]

You know what -- this is the time to make it all about you and your precious family. Don't be discouraged by a soul. None of those people are walking in your shoes or know what you and your wife need. Doesn't matter if they get it or not! Hayden is the priority -- other things will fall where they fall.

I can't even imagine a company that wouldn't bend on this and see your position. I am so sorry you have had even the slightest of things deflate your trip excitement. You certainly don't deserve it.

As I said in another post, I pray for you all often and I pray SPECIFICALLY for your upcoming trip. May it be all you've dreamed.

[merlinmagic4]

Nothing should come between your family and this trip. I sure hope they don't give you any problems. I think we'll all be on edge until Sunday arrives; please let us know.