Monday, November 23, 2009

You Can't Always Be There

As some of you know, I am having Thanksgiving in Shanghai with my family (my parents live there), so I flew out of Phoenix on Saturday morning. Most of you are quick on your toes and have realized that I am going sans Ronnie, and worse yet, I’m leaving him all alone in the Hole. I must say, I feel a little guilty. I already felt guilty leaving Ronnie back in the states for the holiday of thankfulness. I would love for him to be able to join me, but the last (and only) time he was in China with me, it ended in a 50 day hospital stay. So him coming along really wasn’t in the cards. To add insult to injury, Ronnie came due for a tune-up...and there was NO way I could back out of my family trip. So where does that leave us? With a little guilt and the reality that we can only do so much when it comes to planning our lives around CF-related occurrences.

In an ideal world, we family and loved ones would be able to drop everything when it was tune-up time and spend all day and night with our CFers. I know I’d love nothing more. But unfortunately the reality is not as awesome. We all still have to be at work on Monday morning, have prior commitments, have kids to shuttle around, have chores to do, and in my case, a trip booked for months. This all sounds good on paper, but it is a little harder to grasp when you’re sitting on a 13 hour plane ride feeling guilty that you’ve left your fiance of one week sitting in the hospital without you and you’re missing him TERRIBLY (and it’s only been 24 hours since you’ve seen each other).

The only thing that makes me feel better is knowing his family is in Tucson and knows just what he needs when he’s in the hospital. They bring him dinner every night, come over to watch TV, play games, etc. I have to remember that they took care of him for 29 years, and can easily take care of him for a week while I’m out of town. Knowing there’s someone else to pick up my slack makes me feel so much better when I’m feeling guilty, and wishing I was there with him.

Have you ever wanted to be with your family member or loved one and just couldn’t? What did you do to avoid the guilty feeling? And what do you do to make sure they’re still cared for?? CFers- clue us loved ones in, how does it make you feel?

Comments (12)

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I would make him a little Mandi care package. Let him open a small gift or reminder of you for each day you will be away!
Hey Mandi, yes, it's hard. But don't beat yourself up over it. I understand what you're saying, and I'm sure that Ronnie does too.
Ah I can totally understand where you are coming from, Mandi. Mike's parents live out of state and I hate when I have to go to work, school, or anywhere when he's sick. It's tough, but I am sure that Ronnie appreciates all of the time that you spend with him, and all of the little things that you can and do give up to be with him when he is sick.
Hi Mandi! As the father of a 6 month old with CF, my wife and I can already see the extra planning ahead that comes with CF. Having our first baby was a challenge enough, but adding CF took it to another level. Going about your daily life while Ronnie is in the Hole must be challenging.....but it seems like that's what he wants you to do. He has family in town so that should really help :) Love the blog!!
From a CFer who has spent plenty of time in the Hole, we are completely understanding of the difficulties that come with CF. Family members may feel guilty for not being there, but the CFers can also feel guilty for needing you to be there. We understand when you need to be away, and we don't resent it or feel like you're abandoning us. While we miss you and wish we could be with you, but we're happy you still have a life of your own.
it will work out between u two, i see u two really love each other, so u will make it work,, good luck to both of you, and in the future,,, i have a grandbaby that will be born with CF in febuary 2010, we don`t know how bad yet, but we will surly love him and take great care of him,,, i know he is going to be spoiled rotten,,
I'm sorry you guys can't be together on thanksgiving. Maybe you can skype??
OOh Sara likes the skyping idea, my skype isn't on this computer, I wish I had it back.. :) and be sure to take lots of pictures.. :)

you'll make it, you have your entire lives with each other.. this will be long but when you look back it'll be really short!
okay. . . out of curiosity, why is your family in Shanghai? I am actually really fascinated by that. :) Other than that, I spent plenty holidays in "the slammer" it sucks even if you have family. It is hard cuz I would have plenty of visitors, but the only person I really needed was Bryan. Over the last 12 yrs, of course there's been times when he couldn't be there. . . . all the time. Lots of long phone calls helped. Also you might leave "gift" or reminders with his family and they could bring him one everyday while you are gone. That was a cute idea. I hope your trip is safe and you enjoy your time with your family. As for Ronnie, he seems like a pretty tough guy and he'll miss you no matter what you do. Good Luck!
Bob Roberts's avatar

Bob Roberts · 802 weeks ago

Don't worry, Mandi, there are a couple of hot nurses who will "help" Ronnie with any needs he may have. They'll cater to him in the hospital. He's in good hands.
Mandi...its ok. I'm a CFer who has been with the same man for 20 years (married for 15 of the 20). There have been times that I was really sick but he had to go to Florida for a few days to check on his dad who is ill as well. I also have to say it makes us feel guilt free to see you go on with plans or every day life stuff because then we don't have the guilty feeling of holding you back from doing what you want to do. I have those feelings alot with my husband but he does realize it is best for him to take a break from everthing as well...even if it is to check on another ill family member. He went to FL kicking & screaming back in August but he needed to go & when he got back was happy he had. So go & enjoy (as much as you can) your time with your family for thanksgiving & you will be back with Ronnie before you know it. I do also like the suggestion of a little Mandi care package...even if it is a card or two...I usually put a card myself in my husband's bag so he has a surprise when he gets to his destination. Good luck & have a safe trip. Take Care.

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