Just needing thoughts..........

[gijanet]

I can't sleep. So what's new? The Make A Wish rep is coming over
tomorrow evening. Katie has been medically approved for a wish..................so what is the problem, you ask? Now I am having second thoughts. I put this off for as long as possible ( Even though I, obviously, have known it to be true, it's hard to admit on paper that my child has a life-threatening condition and then see that her doctor is in concurrence with that.), but now, it seems it is going to be a reality, and I just don't know. Bear with me here as I try to explain myself.

As most of you know, Katie's fourth OHS is looming over our heads -
sometime in the next couple of months. I really, really want to do the
Disney thing before her surgery - I think we need that family time
together - God forbid, just in case. I would never forgive myself if we
(Katie) actually had the chance to "do" Disney World and didn't...............for whatever reason. ( I keep thinking of our
newest heart angels - Kolbey heads the list because he was granted his wish,
but they didn't have time to take it before surgery - and I know that we
just have to make this trip.) BUT, it keeps gnawing at me, that I am
choosing Katie's wish - not her!!! Yes, she wants to do Disney now! But, God willing, she survives surgery - she just has to - and she wants to,
say, meet Brad Pitt later down the road (okay, my wish again, not hers! Hmmmm! Wonder if I can teach her to say Brad Pitt before tomorrow
night! Heehee! ) and I have used her wish up for her. I don't know
what to do............argh! Seems like it should be so easy! Don is leaning towards just holding off on Katie's wish until after surgery, but, God please forbid this, what if there is no "after surgery"? This haunts me to no end.

In the meantime, we (meaning I) have been trying to manipulate "things" to see if we could pull this off on our own without MAW, and we think we can , but it would completely wipe us out - and I do mean completely!, considering we have to still pay for our surgery trip to Michigan - $2000 for the train trip alone. But it's only money! I would hate to think that I used Katie's wish up just because of money. It's not like it is going to keep me from retiring any time soon - hell! I will be working till I'm 80 by the time my kids get through college !(There is something to be said against having kids later in life! )

I know this sounds ridiculous in the big scheme of things - I should be
worrying about Katie's surgery - not whether she will hate me later
because I used her wish up, but it is driving me nuts. I am probably
subconsciously finding something to obsess over besides her surgery, but
I would appreciate any input. What would you do in our situation? Use the wish up? or deplete the savings? Please don't hesitate to answer thinking that you are deciding this for me. God knows that you can't, but I just need to use y'all as a sounding board. I know most of you can't relate completely to our situation, but you have faced a life-threatening situation in undergoing surgery, so you kind of know where I am coming from. P.S. I strongly suspect that we are looking at surgery early April, although I have yet to e-mail Dr. Bove to get that nailed down.................just can't seem to make myself do that just yet.
Hugs and thanks. Janet

Take care and God bless, Janet, Trip (12 HH & one heckuva Boy Scout),
Katelyn (AKA Katie, 11-19-00, Heterotaxy w/situs ambiguous,
dextrocardia, polysplenia, a complete AVSD, DORV, TGV w/L-looped
ventricles (L-TGV), BSVC, PS, IIVC, and a mod. leaking AV valve; BT
shunt @ 2 weeks at Cook Children's; cath @ 3 months; Bilateral
Bidirectional Glenn @ 12 months at UofM; failed AV valve repair on April
13th, 2004 at UofM; next OHS tentatively scheduled for Mar/Apr '05; a
real little toot, but absolutely adorable!), & Don (DH) Arlington, TX


www.carepages.com carepage name: KatelynSteffen

 

[geebee]

Janet,
Can't sleep either. Your post made me cry - I am sure not your intention but I wanted to share with you that I feel for you even if I can't relate.
I have always understood that being the patient is easier than being the loved ones watching. I know the agony my mom went through with my surgeries and I was "all growed up" - yours must be horrendous at times.
However, you have your wonderful Katie .
Accept the wish now. You are not doing it for money, you are not making the decision for Katie - you are merely assisting her in the endeavor.
MAW is there for people who cannot reasonably make something happen for their child. Wiping out your savings and taking a long time to recover is not reasonable. You will only add something else to worry about that will take time away from Katie.
I will say a prayer that Brad will wait for Katie to grow up. He is getting over his marriage anyway and that will take time .
Grab the excitement as it comes - opportunities have a way of getting away from you and never returning.
Hope this helped.

 

[gijanet]

Sorry, Gina..........

Sorry, Gina..........

Janet,
Can't sleep either. Your post made me cry - I am sure not your intention but I wanted to share with you that I feel for you even if I can't relate. Hope this helped.

NOt my intent at all, but thank you soooooooooo much. Very eloquent and true to heart, your response did help. THank you again. Janet (Now I hope you can get some sleep. ) Hugs. J.

P.S. Uhhhhhhh, Brad Pitt is for me (sheepish look).

 

[Ross]

Take the little martian lover and go! Don't look a gift horse in the mouth. It's an opportunity that few get and no matter what, she will enjoy herself.

 

[hensylee]

A few years ago our high school graduating class of 1950 (old) came back together. Turns out one of us was working for MAW foundation. She was so proud and so fulfilled to be working with the children. She was Mrs Santa Claus for a couple years. Everything she had to say about MAW was good news. As Katie faces surgery, happy thoughts are important. Would her trip to Orlando help provide those happy thoughts. We know you want to give her everything now - wouldn't we all be the same? If you go, and you and your husband are the only ones to decide that, she will be treated so specially and given so much care and kindness from MAW. She and you would have such a wonderful time. If you would like, I am sure she would email you. If you want this, please send me your address by Private Message here in VR.

You are so stressed right now and it's hard to take on yet another thing to concern you. You are to be admired for staying the course - because you love little Katie. Blessins......

 

[Gnusgal]

Take the wish. I am very certain that Katie will not begrudge you for deciding for her... She will just be glad that you wanted to make happy memories with her. You ALL need this wish. Not just Katie. And worrying about where the money is coming from to pay for it sure won't make it the magical trip it should be.

By the way, when you get there, you'll have to look up my sister-in-law (who happens to share Katie's name) who is working at Disney World through the college program this semester. She'll show you around to all the best stuff.

 

[MichyB]

Reading your story this morning sent shivers. Reading it all together as opposed to in bits and pieces really makes the enormity of what you and your family are going through hit home. What troopers you all are!

I think you should consider taking the Wish. The program wouldn't be offered if people didn't strongly believe in helping people out in these circumstances ... and if it was not beneficial to the kids and their families, wouldn't we know that by now? Sounds like your family could use a break.

But ... maybe you could ask your daughter where she would want to go if she could ... even if you suspect that she wants Disney? Kids with illnesses are so much more mature than we think ... would it mean a lot ot her if she got to pick the next family vacation ... Wish or no wish? Perhaps give her a sense of control in some of this? I know she's not even 4 1/2. But kids are so different from each other. Is she too young for that kind of decision? Only you know. Sounds like what is getting you is not only that she may be eligible for the program but that you would be choosing for her ...

Whatever you decide will be right for you all ... There are no words to describe your heroism. I wish that you never need the Wish. But, I'm glad it's there for you if you do.

 

[Karlynn]

Janet, I sure can understand your mixed feelings on Katie being accepted for a wish. But another way to look at it is that Katie's doctor feels that she has been through so much in her little life that she deserves to have her wish granted. Take the wish. Your family needs the "away time". Katie needs to experience the magic before she braves another surgery once again. It will implant in her young mind that life is not all hospitals and doctors - but big huge cartoon animals and fireworks as well.

Also look at it this way. Brad Pitt is to Katie, as Robert Redford is to me. (Not that I don't lust after Brad as well! He is only 6 years younger than me after all.) One day, as a grown woman, she'll look at Brad and think "MY GOSH is he wrinkled and old." Just as I had to do with Robert. Tigger and Pooh will always hold their age.

hugs to you!

 

[Mb]

Oh, my heart aches for you.........

Today, whenever I am faced with a situation like this, I try to remember the most said prayer in the Christian world. The "Our Father". Remember, it says "Thy will be done", not "My will be done". This is being controlled by a higher power than you. The opportunity is presenting itself, and truly is meant to be. So, if it were me, I would take the wish, and really enjoy the special family time, knowing that in this life, it is God's will. - Marybeth

 

[ericaj]

my thoughts

my thoughts

Janet,

I think you are very thoughtful aboutn your and Katie and youyr family's situation. I think you are trying to do what is best for litle Katie and I think that MAW just wants to offer a few days of stress free fun to perk up little Katie as well as you and your family. Not that it is ever easy, but I do believe you will have an easier time getting through and over the surgery for Miss Katie once you are relaxed and refreshed but from a great silly vacation. I do not think you are trying to use Katie's wish eitherm I am just betting that she would ENJOY a trip to Disney - A place where Magic really CAN come through!

My best wishes and Hugs,
Erica

 

[Rebecca]

I think you should take the MAW trip to Disney World before Katie?s next surgery. Plan a trip back to Disney World when Katie?s is older so she will remember the trip. The Disney characters breakfast is a good thing to do because the Disney characters go around to all the tables. Take a cheap umbrella stroller for Katie to use at the park. The stroller that you rent can not be brought on to the cable cars or trains to get to different parts of the park. Only park strollers in the stroller parking spaces or the park employee will move then. The stroller is also good to carry a small duffle bag with drinks, snacks, bug spray and suntan lotion. My sister grew up with juvenile rheumatoid arthritis and it has made her a stronger person. Even today she is glad that she had health problems because it made her a better person. I hope one day she writes a book about her life.

 

[catwoman]

Janet:

If you were Katie and got to go to Disney World (or Disney Land), would you have know you could have chosen to go elsewhere or do something else? You'd be so excited about going to DW or DL, nothing else would matter.
But ... if you are troubled by it ... give Katie several options you think she'd enjoy.

And enjoy the trip, wherever you go!

 

[geebee]

Janet,
Have an addendum to my post last night (or this morning depending on how you look at it ).
I finally got to sleep and, this is a true story, dreamed about Katie at DW and guess who was there - you got it - Brad Pitt.
I woke up smiling cuz - you never know.

 

[Karlynn]

Janet, this one's for you!!!!!!!

Janet, this one's for you!!!!!!!

I just received this email from Janet. (Just pretend okay!!!!)

The strangest thing happened to me at lunch today. I was sitting at a local outdoor cafe having lunch by myself and two men came and sat down at my table..... I gave them the death look, but they just casually stayed at my table and wouldn't leave me alone. I shined up my ring on my married finger, then placed my hand on the table and I hinted to them that I was married and that I was not interested in them. Luckily for me they got the hint and left, but thankfully the whole thing was captured on the Cafe's camera. I'm sending you this picture as a warning.............. just in case they try and pick you up too.

Honestly, some men think they are God's gift.

 

[Bryan B]

Janet,

Take the wish!!!

Save maxing out your savings for Katie's college tuition.

 

[Emma]

go!

go!

Janet,
I 110% know where you're coming from and your post brought tears to my eyes as i have often felt this way about Chloe and making decisions for her.

I also hesitate to tell you what i would do because ultimately it's your decision but my gut reaction would be take her and have the time of your lifes together and create many happy memories for you all to share! I have absolutely no doubt Katie will fly through her surgery with flying colours and then you can use your savings and take her all over again as a 'recovery treat'!! Failing that use the wish and convince Katie she wants to come to England and stay with us!

Just one more quick thing and sorry to disappoint you here, but I'm pretty sure Brad is waiting for me!! LOL (in my dreams!)

 

[Guest]

In some ways, I wish my parents had considered "Make A Wish" for me.... In other ways, I'm glad they didn't. I know that doesn't make sense...but I can't really explain it...it's just one of those things, I guess.

*sighs*

Sadly, many things these days just don't make sense.... But, I digress....

Janet, I'd go to Disney World. I don't see Katie hating you at all. She is much to hyper and happy of a kid to waste energy on hating anyone, especially you or anyone else in her family. I was shocked...and still am...by Katie's upbeat attitude and her rambunctiousness the night we all met in TX last October (golly...that's been some 4 months ago already...aye!).

And, as has already been written, this wish is more for your entirely family...not just Katie. I think you all deserve it.

Good luck with whatever you decide.


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
What's it like to buy your favorite car brand new? Wish I knew...

 

[Harrybaby666]

Take The Wish Janet...

Take The Wish Janet...

You need this time away with Katie....I hope with all that I have in my heart and mind that you will look upon this as somthing that will give you, Katie, and all your family members the courage to get through the upcoming events for Katie, and know in your heart that we are all behind you as you spend this time with Katie. My prayers are for you and yours. God Bless...Harrybaby666

 

[Abbanabba]

Yes, she wants to do Disney now!

Janet, knowing what a wonderful, kind and caring person you are, I can't imagine Katie being any different. If it's Katie's wish to go to Disney Land now, then she will never regret it - let alone hate you for it!! Take the chance to go through MAW now and save your money for other wishes in the future. If the worst does happen (and we are all here praying that it doesn't) you will only leave yourself destitute and the wish would have been wasted anyway - so grab it with both hands, and stop beating yourself up about it.

Sending best wishes and positive thoughts to you.... (..I tried for Brad, but he just wouldn't return my calls!!! ..)

Anna : )

 

[Harpoon]

Katie's five now? (or will be soon maybe...)


Take her, go ahead.

My wife and I have done a few trips "for our son" that have been more for us (or at least HER) than anything else.

We took him to see Seasame Street Live a few years ago. He BARELY remembers it but my wife's wanted to go since she was a child. We did the same thing with Bear in the Big Blue House which Patrick does remember, vaguely.

We went to a Buffalo Sabres game (before they killed professional hockey) and everyone loved it. Same with Niagara Falls and Marineland. Patrick still talks about seeing the dolphins and the whales and getting to pet a whale....


She's old enough now to remember stuff like that and it's a chance for all of you to "escape reality" for a day or two. Take it. You'll probably regret it if you don't and if she's that "serious" to qualify then a lot of people who deal with very sick kids all the time believe your daughter deserves it.



I wish there was a Make A Wish foundation for adults....


Granted, my wish would be for a nice house which would cost a whole helluva lot more than a trip to see Mickey Mouse and Donald Duck.....