Disappointments...

[CFTwins]

Hi All,

To start... a disclaimer... I just got home from vacation at 1am so I'm tired and it's raining outside! So, perhaps I feel a little more blue today than I need too ; )

I am wondering how you cope with CF "getting in the way" of your plans and enjoyment. I am generally an optimist and look on the bright side even when something bad is happening with the kids. I think over the past year I've mastered "getting over it." But the last few days the disappointment is just nagging and making me feel blue. So I'm wondering how you cope with it? Get over it? Don't hit this slump? (

My quick story: We just took our twins on vacation to visit family in Portland. All of the things that I expected to be difficult were great (angels on the plane, played nice the cousins, slept through the night, .etc.) However, on the 5th day of our 10-day vacation (the day we left for the beach) our little guy started vomitting and not pooping... so off to the ER to make sure it wasn't an obstruction like he had in March. Long story short, 4 ER trips and an overnight in the hospital, several IVs, a gazillion medical opinions and now he's feeling better.... and we'r home. It may not have even been CF related - maybe just a bug. So we canceled plans, left the beach, generally stopped the vacation.

I'm so thankful that he's feeling better and that we're home... but now I'm struggling with getting over the vacation that wasn't. I realize rereading this over that it sounds pretty whiny when other people are struggling with life and death issues and I am whining about my vacation being spoiled....I'm starting to think I should just never plan anything than I won't be disappointed!)

Given that - I'd still like to hear your advice about coping with setbacks.

Stacy

 

[folione]

I've got a 3 year old w/CF so it's not quite the same as dealing with 2 15-month olds at once. We've been lucky not to have had any medical issues arise in the middle of travels but we have had to change plans to fit hospital schedules and it is frustrating to have worked out details only to have to change them - I'm sure it's vastly harder coping with changing plans mid-stream. That said, we have only attempted a few short (3-5 day) non-family vacations; the rest have been to stay with family in other cities where disruptions are easier to deal with than at a hotel in a strange city.

One thing that helps me a bunch in coping with the whole CF thing, not just vacation effects, is that my boy has been generally healthier than any of his non-CF friends; there have been far more emergency room visits and scary bugs caught by his little buddies and it kinda helps me remind myself that I can't blame everything that goes wrong on CF: lots of bad stuff happens to lots of people, not just us and we're not the only ones running to the ER for our babies.

 

[MOME2RT]

You are totally entitled to feel crummy. Last year our annually vac got cancelled due to Reece going to clinic that Fri. we were suppose to leave. As mothers of CFers we tend to take on ALOT and I think thats what makes the fall even harder. Try to look on the bright side...you DID get to go on vac for a few days AND your little one is doing better!!! Look back at all the great memories during those days and dwell on that!!! We are planning a vac for the 1st week of Aug. Reece has a clinic visit July 21st. Im hoping we get to go this year!!! Take care!!!

 

[illbehaved]

Stacy,<br>
First of all, you are doing an amazing job with what's on your
plate. I have 6 yr old twins w/o CF and that is hard enough! In
this household, the disease is mine. Yeah, know doubt plans are
hard. Even right now I am only half way through 3 weeks of IV
antibiotics. This is in the middle of summer, when the kids were
expecting a few theme parks and other day trips, etc. This is on
the heels of 3 weeks inpatient for a bowel obstruction last May. My
digestion system sucks, but you try to adapt ( I would however keep
an eye on herniation, my first surgeon didn't bind the incision.
The second surgeon said with all the coughing and no binder I was
probably herniated by the time I left the hospital!)<br>
I wouldn't say you have to lower your expectations so much, as
trying to see some good (you still got to see family, hopefully you
had extra support during that time, and in the end it was a pain-
but at least for something "OK"<br>
You are pushing forward with little ones that on top of being sick,
can't tell you what is wrong. God bless you, but hopefully their
little bodies will even out a little and all of you can breath a
little easier.<br>
Tips, know where their might be the best clinic in your area, but
plan to go. Make sure that everyone knows that , just like rain,
sometimes the unexpected can change your plans; and then just
assume you'll adapt. Look at outings with having possible speed
bumps that you might have to throw a few extra stuff in the car
for. knowing that your'e as prepared as you can be, sometimes let's
you just "GO FOR IT."<br>
I was dx at 3 with CF and 4 with Diabetes. For years trips were
taken with some trepidation, but we went. I spent Christmas Eve in
the hospital while visiting family one year- bummer, but I also had
two other trips back home with no instances at all.<br>
My kids are still disappointed but we are going to the free library
shows, seeing the free morning kids movies at our local theater
(regal cinemas does this in many locations nationwide,) and
learning a lot of board games. They adjusted because it was
different, but still fun I I think they'd be a little annoyed if
they knew they were also learning!) Play dates  are
not something I can do right now, and my daughter did miss a
birthday party, but we'll just try and make the next one.<br>
As your little ones get older, their are things that will be
interrupted missing a theme park day because one is sick will
probably not create a pleasant mood, but if they already (from
experience) know that you'll just try again, it will be an easier
pill to swallow.<br>
Having said all that, I get your anxiety and blue mood. As a parent
you want to give your children everything you can. Now you face not
just an unknown medical battle, but a psychological one as well.
I'm sorry to tell you this, but your human. Get some sleep (if you
can,) take a deep breath, reach out to others, here or maybe a
local support group as well, and let someone hug you or hold your
hand for a little bit. Will it always work out like planned, nope.
Can you handle it, I have no doubt. Hang in there.

 

[fourkidsmom]

Stacy,

I read your post and just had to comment, I know exactly what you are talking about. I can't say I have twins to deal with both with CF, bless your heart! But we have had the disappointments with vacations and the bowels obstructions. Our now 5 yr old son with cf would get about 4 a year, it was so aggravating. One of the worst ones was when we went camping 3 hours from home. We have 3 other kids and beleive it or not we ended up going to the hospital at 1 in the morning, he then was vomiting and feelng a little better so we stopped in a parking lot and waited for about an hour and decided to go back to the campsite where we had a camper, but we all slept in our van because we were afraid we would have to take off at any time and we all were so exhausted with what was going on. He would get really bad stomach aches and you could actually hear his belly rumbling loud. He then would not eat and start vomiting and cry in pain. They would put him on his normal miralax and lactulose daily and up those doses and we'd give him up to 4 enameas daily- yuck- he really hated that and they'd put him on go lightly. Luckily he has always passed them on his own, only one time going into the hospital, one time he was getting ready to when he was still in diapers and then had a huge poop in his diaper and we got to go home. I never thought I would be so glad to see poop!!! The last episode he has had with it (knock on wood- it jhas been the longest time without one) was October 1, 2005 and we drove almost 3 hours to my husband aunt and uncles 50th wedding anniversary and we were to spend the night, etc., Well we ended up having to leave about 2 hours from arriving, weird thing is he ate mcdonalds on the way and was fine before and boom there it started. I still keep a daily diary of his stools, so I can see if he may be getting backed up. It really helps and he is so funny he tells me when and how many times he has went and tells me to write it in the book. Good luck with that because I know at first when he'd get htose all the time, I was at the point, I wasn't even going to schedule any more things because of him having the obstructions or being in the hospital for his lungs. This year I have all our vacations scheduled and hope it will all turn out!!! this disease is just like a rollercoaster you just never know.

Fourkidsmom
Step mom to 14 yr old girl no cf
Mom to 12 yr old boy no cf, cf carrier
Mom to 5 yr old boy with cf, 2 med port surgeries, 2 bowel surgeries, 2 nose polyup/ sinus surgeries, cultures cepecia, pseudo, staph
Mom to 3 yr old girl, no cf, but chromosome deletion 9 q 21.2 q 22.1 - developmental delays, oral defensiveness, no speech, behavior problems, poor vision, seizures

 

[Jane]

Having a child with an illness requires flexiblity, your schedule and your expectations. We learned along the way to raise and lower hopes for our kids as their health is good or poor. Changing plans or expectations IS disappointing, but realistic. Things happen. Don't dwell on the negative or you will be depressed and unable to enjoy the good times. So you had a few less days, how were the other 5? Find the positive things and celebrate them!

As a mom of sick children, this has been a hard lesson for me to learn. As with all moms starting out, you hope everything is perfect for your child's future. As time goes on, you learn to compromise. Its just like that "Holland" poem. You learn to deal with it.

It happens all the time. That's not to say I don't still have hopes for my kids's future, but I try to stay realistic, and optimistic. When they do well, it is a blessing.

 

[Ratatosk]

I have worried about travel with DS, but we try not to let it interfere with our plans. We've flown to Denver a couple of times and met my family at Rocky Mountain National Park. I doublecheck what kind of medical facilities are available whenever we travel. Last year he developed a fever and was kinda whiney -- loss of appetite. I gave him some tylenol and kept an eye on him - prepared to take him to the doctor just in case. Worked thru whatever bug he had and was fine.

Our doctor is available most of the time, so if something comes up, I call his service and he calls back. He's had to call in a few prescriptions to us when we've been on short out of town trips.

I was a little concerned with going to Mexico last winter with him for a wedding, but we just made sure we had all his meds, clinic phone numbers and I researched the local medical facilities in the area prior to flying. I do get stressed out before we travel. Waiting for the other shoe to drop, so to speak, but I can't let my worries prohibit us from attempting to get away and have a good time.

BTW, we also travel with a bottle of milk of mag. Seems when we're out of town, DS gets off kilter and doesn't eat as much and sometimes gets constipated. Haven't had to use it in recent years, but we have it along, just in case. Liza

 

[JRPandTJP]

We all have needs. Sometimes when we have to spend alot of time taking care of others we forget to take care of our own. Sometimes our own needs don't seem valid or we feel selfish for taking that 1 hour to go talk to someone about the stress and grief we sometimes carry with us. I think we some how tell ourselves that we have to be optimistic and have high hope all the time or all things will just crumble before our very eyes. When I am feeling upset, guilty, saddened, even resentful, I try to go into it and give it some time. I feel it fully as best I can...go for a walk by myself and wail if I need to. Then after a day (or week or month) of letting it come I say okay I'm done grieving now, it is time to stop being sad about my son...he doesn't deserve it and I won't let it go further. I try to see this as part of me, not all of me. We have parts that are hurting, frustrated and grieving at the life we pictured for our children before CF entered the picture. As a new one forms we have to allow these parts time. You deserved that vacation and it's okay to be pissed that it was cut short...let it come, hit a pillow and tell CF you're pissed off and you hate that it did this to you and your little one. Let the tears flow and then let it fade away. I once found myself screaming at the top of my lungs at the universe for doing this to Ben, for all the sick children of the world and how unfair it is to have them suffer one second. My husband just let me do it and he held me afterwards as I grieved for all the pain I imagine for my son. Then I realized it is just that...imagined future, imagined suffering. You are the opposite of selfish...you are human and you are a loving mother who would do anything to change this for your children. It takes strength to be fragile. The joy comes back, nothing lasts forever.

Jody

 

[farmfamily]

Stacy,
You may already know this and I am not talking from personal experience rather it's from a friend of mine who has a daughter w/CF. Normally the daughter had been very healthy. Once on a vacation they had to make an emercency trip to ER. Vomiting and short of breath. Turns out their daughter who was very prone to motion sickness they had given her Dramamean and it constipated her big time. You may already know that but I did'nt.

Terri

 

[LisaV]

I think you need to do both.
Have realistic expectations - which means you have to be prepared for an exacerbation anywhere anytime.
AND look on the bright side -- which means that if half of your vacation days are really fun then you remember those.

Since folks can have an exacerbation anywhere anytime you might as well be on vacation when they have it.-- wouldn't want to never plan a vacation because something might go wrong - but you do need a plan you are comfortable with to deal/treat if one comes up.

And I think family members need to mourn their losses just as much as CFers. Trying to pretend (or stuff) the losses that CF causes family members in my experience just makes the anger come out sideways and causes bitterness. And folks (especially kids) are NOT stupid. They can see disappointment on our faces. Saying "oh I don't mind" isn't going to cut it long term. Better by far to acknowledge ahead of time that you're all trying to sneak a vacation past CF and talk about what your plans are to do that and (if you don't pull it off) how ticked off you all are and how you will outsmart CF the next time.

 

[CFTwins]

Thanks so much everyone. I was bluer and bluer yesterday. Your e-mails buyoed me today...even alongside a few tears of release too.

I love the pragmatic advice (like the M of Magnesia and Drammamine), the shared stories of challenge (at least I wasn't camping or in Rocky Mountain National Park!), the wisdom of people who have been their before and the permission to feel pissed off and sad. I'm going to give myself some time to be disappointed... and then get ready for our next fun adventure.... for next year!

Thanks everyone.

Stacy

 

[fourkidsmom]

Stacey,

Just remembered that when we were camping, we actually had to go out and get enemas and do them in the camper with our now 5 yr old with cf. You want to talk about uncomfortable and then at the time he of course was screaming his head off , I am sure people were wondering what we were doing to him. I know alot of people probably would of headed home, but we stuck it out--- it wasn't the greatest time but you learn to appreciate the times things go good without any problems from this pain in the butt disease. Just remember you are not alone... whenever you need to vent please do so!!!! We are here to help each other!

Fourkidsmom