Discussion in 'General Parenting' started by Kit_Kat_MI, Feb 23, 2007.
Goodness Kaz, you have a lot on your plate right now. Don't make any decisions until you know what you are dealing with. In the meantime I'm sending soft hugs and good thoughts.
Please let us know when you find out more.
I agree with Nancy. You'll make better decisions when you have more information. Sending hugs and prayers.
I'm so sorry to hear what you're going through!
I just wanted to offer a little optimism and support. Years ago my sister had a brainstem lesion and the darn thing just resolved itself - eventually went away on its own. We all white knuckled it through the biopsy and waiting for results, and several months of follow-up MRIs, and I remember how very, very hard it was on her and all of us who love her, not knowing what to expect. I hope you have an anticlimactic situation like hers, and I agree with Nancy that it's not time to make any decisions, maybe just start compiling a mental list of all the support people you can gather around you should you need them.
All my best,
You definately have alot to think about. But what they suspect, may not be the case, or it may not be as serious as they may think. (keeping fingers crossed it isn't)
I had to give myself some time to answer your post. I have end stage renal disease. And I don't really talk about with much with other people.
I've lived with kidney disease most of my adult life. And although I received a terminal diagnosis, I just don't think I ever really went as far as to think of how it would affect my parenting. (weird huh?) I guess I was too caught up in the day to day.
But the first thing I did was make sure I had plenty of support in place. I live several states away from my family. So I couldn't just include family in my support system. Luckily I had friends who could step up and help til family could arrive and take over the situation if necessary.
Knowing I had someone I could call and say, hey you know I'm having a really horrible time coping today, could you come and take the kids to give me a short break? Helped alot. I didn't get it too often. Luckily I had husband to pick up the slack alot during some of the roughest times.
All I can say is that for me not looking too far into the future helped. I have a vivid imagination. If I let myself worry, I could have myself in a panic in short order. So I pretty much took things as they came. The support system let me do that.
And I was lucky that for the most part, if things were really bad my kids, yep even difficult children, would try extra hard to be on their best behavior and to help too. Now my T, being autistic didn't always "get" what was going on. I swear sometimes it seemed like the worse I felt the worse he acted. Then my Mom would step in and take him home with her.
Overall, I think we've managed as well as any family would. But I know I couldn't have done it without a family/friend support system.
Saying a prayer that whatever they find is not serious and very treatable.
G'day, Kaz. A lot really depends on whether you've only recently acquired this or whether you've had it for a while but just not had a name for it.
My symptoms are similar to MS, but I've had it for 24 years. On and off to begin with, but fairly static for about 20 years. I still get worse at times, especially if I'm fighting a cold or similar. I need to rest a lot.
The thing is, if your child is used to you being disabled (and I don't shy away from the word - it can actually be empowering to embrace it) then they won't notice much difference except when you going here and there for tests and procedures. Just as difficult children adapt to whatever they're dealing with, so they adapt to anything else unusual in the home situation.
Example: I grew up on a small farm, part of a large family. My mother was disabled and I often had to step in to get dinner prepared, if my mum was back in hospital. Since I used to have to help a lot anyway, doing that bit extra wasn't really a huge deal. Of course I would grumble but I'd be pulled up sharp and told to do it for my mother.
My own kids - easy child was the only one who knew me when I was well. She was very resentful at times. The others just took me and my problems in their stride. I remember easy child 2/difficult child 2 when she was only two years old would pick up my crutches if I dropped them. When she later started school and had a classmate with cerebral palsy, she would do the same for him. I remember one day he was working near the classroom door and needed something from his schoolbag just outside so he began to crawl to the door. She saw it and ran to fetch his crutches for him, where they had been left beside the teacher's desk. Not asked, just saw the need.
My biggest handful now, difficult child 3, will look out for me. Sometimes the kids seem callous in their apparent lack of concern, but if they lived their lives in an aura of concern they would be stressed. It's more natural to just get on with life. I call it "Doing the best you can with what you've got."
I need to physically rest a great deal. I cannot exercise - my muscles simply stop working if I do too much and I have to wait until I can move again. I catnap a lot. difficult child 3 will wake me (he's not quiet enough) but I know if I deal with whatever is bugging him, sort it out then he will go back to whatever he was doing and I can nap again, if I haven't had enough for the moment.
I work in my bedroom. The phone is there; the TV; my laptop. I can hear the garden gate and I can see if anyone is walking up my driveway, so I rarely get caught by surprise. I CD at the desk although I could hook up to my laptop. So CD is forcing me to do more physically, within my limitations. I can still drive a car. I walk with crutches about 1 km or so, but much more than a few hundred metres I ride one of those "old folks" electric scooters. I've hippied it up. Same with my crutches - I didn't want them looking cold and surgical so they're covered with stickers and tassels.
If I were 100% fit I'd be in the full-time work force. I would not be available to help difficult child 3 with his schooling but instead would be forcing him to continue in mainstream ed. We'd have a lot more problems and I'd be struggling at work with all the time I would need off to attend meetings and appointments for him. Instead, I'm available as an advocate. The official I'm haranguing over the phone has no idea I'm lying on my bed in a darkened room. I take notes while on the phone and if I happen to be at my desk, the notes go straight into the computer diary.
By being organised as much as possible, by having a supportive family, we do OK. Probably better than OK. I know I can't expect it all my way so I do what I can to make it easier for the family. If I rest during the day I can cook dinner. Often several dinners, because different kids have different fads. But I've got a system in place so I'm not overdoing things. I plan my time and my energy. By cooking ahead and filling the freezer on good days, someone can always thaw out a good meal if I'm too ill to do anything. Right now husband is cooking dinner. It's just how it's worked out tonight; plus, I'm very tired. We have a houseful of appetites, with easy child 2/difficult child 2 and her boyfriend, plus us plus difficult child 3. Even when I'm tired, I have to plan early so I won't have a houseful of whining, hungry people. Keeping them well fed keeps my life calmer. (I have a recipe book I've developed if you're interested - I can pm it to you, or email it to you)
So - if you have support; if you've already had to slow down a lot anyway; if you can be/get organised even as you look after yourself; you can do it.
If this is a new change in your health, then be prepared for difficult child to be resentful. Any kid would be. If you have to send difficult child away, this could send a message of rejection. it's hard for a kid to not feel this. Do make sure you involve difficult child in the decision and the reasons for it. She has her own support system too, of sorts, even if it's just the tree in the garden.
Keep her informed and involved anyway, so she doesn't feel guilty or responsible inappropriately.
It can be done. Of course it would be easier without having kids to worry about, but in my case I think it's kept me more active and less self-absorbed than I would have become. Having a child who needs me gives me something positive to live for.
There are a lot of variables. I'm not in your body, I can't advise you what decision to make. But I would wait, if I were you, until situations become such that you need peace and quiet and she needs less upheaval. It really depends on too many things.
Keeping you in my prayers that the news will be better than expected on Monday.
Sending prayers & positive thoughts your way!
Sending warm caring thoughts your way. I'm also amazed, once
again, at the depth of knowledge & support available in our cyber
CD family. What a gift we all have to be able to share. Hugs.
I think you have enough to worry and think about right now. Try not to think about plans until you know if plans are even going to have to be made.
I can tell you that my sister was diagnosis'd with MS a little over 3 years ago and it has not negatively affected her health or ability to single-parent her children and work at an extremely demanding career. She is healthier - taking care of her body more (working out, yogo, eating healthier) and has to give herself injections a few times a week.
In other words, you will do what you have to do.
Try and take the weekend to rest, enjoy some down time with difficult child, and take to heart some of the words of your quote - don't fear the unknown.
Lots of hugs,
Fingers crossed for the best possible news!
If you read the signatures on peoples posts, you might see that a lot of people here have some hefty diagnosis'es for themself in addition to the ones for their children.
I have had similar experience as Marg- I would still be working 16-20 hours shifts 6-7 days a week and trying to juggle raising my 3 kids and care for my very ill husband had I not been stopped in my tracks WHAM! by severe Lupus and rheumatic illness.
My husband has brain lesions, diagnosis'ed many years ago. My best friend had MS and then melanoma and lost an eye while parenting.
I would suspect some of the biggest changes in your life might be how you view life. Possible it might change some of your priorities and focus.
I greatly feared how I would parent my 3 kids, 2 of whom have disabilities, while fighting my battle for my life and while taking care of my dependant husband..........but what has happened is we began to really LIVE the gift of life more. In that process, I like to think my kids have become more compassionate people.
Becuz my family deserted me when I did not leave my very ill husband, and becuz my husband is also very ill, I have had to be creative and make a go of it on my own. It is not easy, but, it is not impossible. We had a crash course in "picking our battles"
Hang in there. Take it one step at a time. Once you find out just what it is you are dealing with, maybe you can join a support group, either in person or online. Very often support groups help guide you to available resources and share ideas specific to the needs you might find yourself needing along the way.
My thoughts are with you.
I am so sorry for your problems. I too would advise you to get all the facts then weigh your options before making any decisions. Just remember you MUST take care of you first. If that means sending your difficult child to relatives while you recover then that is what you should do. Talk to you doctors and to hers. Take as much time making your decision as you need and that your condition will allow. My thoughts and prayers are with you -RM
Prayers for good results on Monday
Whatever you learn tomorrow, deal with that first and worry about your difficult child afterwards. Kids deal with alot more than we think they can.
I will pray that you get good news. My sister has been diagnosed with a brain tumor and possible MS. They have dealt with the tumor by scheduling surgery but are still running tests to see about the MS diagnosis. I don't know if it is typical that it takes repeated tests to diagnosis MS or if her tumor has just pushed that to the back burner so to speak. Hope you get your answers quicklly.
Wish I had something helpful to say, but you are in my thoughts and prayers.
why did they schedule an mri for 240 AM? middle of the nite?
My best friend had MS from the time her kids were toddlers. (they have now been driving for 2 years, LOL) We worked together as nurses. She did OK and continued to work.
My husband best friend, (best man at our wedding) also has MS.
2 of my aunts and an uncle have MS.
It does not have to be bleak, have hope, good luck!
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