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cari
01-19-2010, 01:31 PM
I have no idea how some of you get through everything you go through. I am going through one of those rough spots where everything just seems so down. Emerson is doing fine and progressing really well but we are at a stand still because they will not decanulate (operate) here in Ontario until the child is at least five years old. I think that I am just having a low time. I want to know what everyone else does to cheer themselves up or to get in their "Me" time. I am thinking about going to a counsellor. Any suggestions?!

saywhatyouwill
01-19-2010, 02:17 PM
i think it's impossible to not feel that way sometimes!

how old is emerson?

if that feeling lasts then counselling is probably a good idea: i hope it works for you.

can you deliberately make time for yourself? i mean, try to make sure that you DO do something for yourself instead of just thinking about it.

one thing that worked great for me is to get away from the house, with emily usually. just load up the suction machine and all the clart and go somewhere. then i was so tired when i got back home i was happy to be home!

LKN
01-19-2010, 03:02 PM
I second the idea of counseling. It will certainly help to have an outlet to express your feelings. Can you get out by yourself or with your husband? Time with your significant other is a great stress reliever!

Is there any way you can get a second opinion on the time frame for trach removal? Five years is an awfully long time.

Ainsley's Mom
01-19-2010, 09:58 PM
The thing that was best for me was to accept the trach as a part of our lives instead of focusing on when it was coming out. I know that's easy to say and hard to do. It's been a long journey for me but I am much happier now that I have accepted that for us it might not come out. You situation may be much better, I don't know the details. But I think it's a good idea to get professional help in coming to a place of acceptance of your situation whatever it is. :hug: I know how hard it can be.

saywhatyouwill
01-20-2010, 09:52 AM
The thing that was best for me was to accept the trach as a part of our lives instead of focusing on when it was coming out. .

i absolutely and completely agree with that.
:)

lynn
01-20-2010, 12:07 PM
I have accepted that the trach is a part of our lives (and we dont really know if it will ever be gone) and I try to do as much as I would with a normally healthy toddler.. I would still be avoiding crowds, cold and germs (Im a little phobic about those things anyway).. I try to go out and do what I can with Joseph and my other kids.. I just have to carry a bit more baggage with him than I did with the others.
Counceling may help even if it is with acceptance of the way your life is at the moment.

Carla Marie
01-20-2010, 03:09 PM
Hi Cari

B Vits are really helpful! EVERYDAY! Excercise and having a friend to talk with. If you have those three things, I think you should be ok.

IF you need someone to talk to I'm happy to give you my number! PM me.

:hug:

Peyton's Parents
01-20-2010, 11:19 PM
I did the counseling but after a few sessions the counselor basically "fired" me - she decided there wasn't much she could offer me but to listen to me vent since she knew nothing about a situation with medically fragile kids.

I would agree with some of the other postings - I finally reached a moment last spring coming back from a dr's appointment with Peyton's jaw surgeon where I had a mini-breakdown (I gave myself about an hour of non stop crying). I finally came to the realization that the trach is a part of our lives and I needed to accept it. I had spent the first two years of Peyton's life basing everything on "when we get the trach out" instead of living in the moment. It was a very difficult place to be but once I embraced the trach for what it is - a way to keep Peyton healthy and happy and home with us - I have done much better. I don't spend my time planning around the trach coming out but have started doing as much with her as we can - trach or no trach. We take her out all the time, I drive with her without a nurse so I can get out of the house, she took a dance class this winter and is currently taking a taekwondo class. Instead of defining her in my mind as a trached kid I have redefined her as a kid and by the way she has a trach. It took two years and was definately a process but until I accepted the trach fully I often felt stress and anxiety as more time would pass with the trach still in. Now I am almost going the opposite direction - when a doctor mentions decann I start to get anxious - wait is that really safe? Strange how the mind works.

cari
01-21-2010, 07:06 AM
It is nice to hear from people who understand and know what it is like. I appreciate all the support and all the suggestions! You are all wonderful!

Kate
01-21-2010, 07:41 AM
I agree with others...I think we all feel blah sometimes. I know I sure do. For myself-I really just do not allow myself to look at the future. I just can't because there are just so many unknowns and so many things that Mitchell may not be able to do. That in itself helps me get through.
This board of course helps TONS. It is very comforting to know that someone knows exactly how you feel.
I also found that writing helps. I'm not a writer, but doing Mitchell's caringbridge journal really has been a nice outlet. If you don't want to do it publicly, like a caringbridge journal or a blog...keep a little diary and write in it as much as you need to. Maybe start every night before bed...focus on how your day was-what went right, what bothered you about the day. (I think it is important though to also focus on what is right in your life as well.)

Meds....I personally haven't had to go on meds but there are many who take meds for depression. KNow that it is OK if you need them. I think that sometimes people get so ashamed if they get depressed and need meds-but good god I think it is nearly impossible NOT to get depressed at some point while living the type of life we do.
:hug: :hug: Know that we're all here to listen. :)

Melisande
01-21-2010, 09:56 AM
I did counseling for a while... but mostly what helped was lots and lots of antidepressants! After the first few months at home, I had to have them. I felt more like myself. When I got pregnant with Conrad, I went off them and I haven't gone back since, but Donovan has also made some significant improvements too. This is a rough cycle of stress we all go through. It was enough to send me over the edge, but meds helped me a ton! There's no other way I could have made it, to be totally honest.

This board, friends, family, it all helps, but I had to get my head straight first.:hug:

kadiera
01-21-2010, 11:06 AM
Having been to counselling multiple times, I can say that it helps if you find the right person. My current therapist doesn't know much about medical stuff, but specializes in grief counselling, and a lot of times it *is* a place for me to vent - knowing that I can say things that will never get back to nurses, doctors, family, or friends is sometimes helpful in getting things straight in my head.

I was on meds for a while last winter - winter in Michigan is hard for me to begin with, plus Alexander was still in the NICU and about to get a trach (though we didn't know it at the time) *and* my husband was hit by a car while crossing the street to catch his bus to work.

While therapy has gone all over the map, from childhood issues to marital issues to Alexander....a big part of the process has been focusing on self-care. I'm finding that a key feature to surviving this experience is that I really do have to come first (unless Alexander is turning blue.... ;) ) - if I don't, there is no way for there to be time for me, no way to make time for my marriage, and no way for me to function at the top of my game, which is important when you're coordinating so many medical things.

It's always been my expectation that having a child could not take away things that are core facets of my being - and while I lose sight of that from time to time because of Alexander's very complicated life, when I remind myself again of things I love that I'm not doing, and make time for myself first, everything goes more smoothly.

MRSJOH
01-21-2010, 11:11 AM
everyone seems to have different things that work. I like walks, and coming here and complaining, thankfully people aren't sick of listening :-) There will always be bad days, allowing yourself to feel bad i think helps me too. Somethings there is no control over so I try to find things I can control. I have been researching the perfect toy box for months...
GL this too shall pass, or that's what they keep saying

JacobKaden
01-21-2010, 06:40 PM
Hi ya Cari,

We met a while back at Mac. I am wondering why they are making Emerson wait 5 years before operating? Is it a specific issue that requires that long for growth and development? Jacob had a double stage LTP last March at Mac, when he was just shy of 3, which did not work. We are now taking him to Ottawa for a second opinion by Dr. Bromwich, who trained under Dr. Cotton. You will find this Board to be a HUGE resource both for the trach stuff and the lifestyle that goes with it!

I also took antidepressants for a while and am now weaning off, as I have now adjusted to life with a trach.;) The others have given great suggestions as well. Good luck.:hug:

TaraB
01-21-2010, 08:09 PM
I've been there with all of you. I also agree with focusing on the trach as what is keeping Logan healthy, happy and breathing. We were first told that he would probably have the trach for a year. Now that we are almost to his first birthday, I can honestly say that do not see it coming out any time soon. We had a very good nurse in the PICU after Logan's trach surgery who happened to have a daughter with a trach, and she told us that we would actually get to a point where we would rather have the trach than not. At the time I was like, "No way will I ever think that."...well, never say never. At least with the trach I know he has an open airway.
I remember going to the doctor for my "release" to go back to work last May; I broke down to a complete pity party--this isn't fair, I didn't do anything wrong during my pregnancy, how could this happen, I have 3 healthy, "normal" kids, this isn't how it is supposed to be. And the poor doctor just sat there and cried with me (she is an angel!). After that (and some serious praying and discussion with good friends, pastors, and fellow parents of special needs kids) I realized that we were meant to have Logan and he was meant to have us. This wasn't something "done" to us; God gives us what he knows we can handle, and He knew that we would love Lo for the gift that he is. My husband said to me just a couple of weeks ago, "I'm glad Logan is who he is--look at how much we have learned because of him. We now see things we would have never noticed before."
I hope that you find an outlet, Cari! And know, you will always have one here. I do not know what I would do without all of you here--you have all kept me going on some VERY down days!!! God Bless you all!