I Had A VERY rough night last night and need some advice

[AutumnMist]

I read to our six year old daughter every night, its a chance for us to bond and just spend some quiet mom and little girl time together after the rush of homework and bath time. She rolled over after I had finished her book and she asked me "Mommy? When is your disease going to go away because I don't like it". I answered her honestly and told her that even though it will be a part of our lives it doesn't have to be something that she is scared of or that will make things between her and I further apart. That I would always love her. I held her and she talked about it. She answered in a way that only a six year old could. She told me that she wanted her old mommy back. Because she didn't like to see me sick. I went into my bedroom after kissing her good night and cried. Man that tore me up. What would you do?

On Edit: I was diagnosed with YOPD last May. Young onset Parkinson's. If you know anyone going through the same thing I would love to hear about it. :)

[nadinbrzezinski]

1. You handled it perfectly well

you need to be honest with kids

Most folks don't realize just how much they actually understand

[AutumnMist]

3. I have always tried to just be straight forward with her

on a six year old level of course. We dont break out the MRI's. LOL. Thank you for the response, its much appreciated. :pals: I at times feel so insecure walking this road with such a young daughter.

[Ahpook]

24. You did very well:)

It is important to be up front about these things with children. Kids are smarter than we give them credit for.

I realize it's quite a bit different but my cousin shot himself a few years ago. Obviously his son started asking questions and his mother explained he "bumped his head."

I really think this should have been explained in a way he could understand? I worry my little nephew will have to go through all of this again WHEN he finds out the truth.

[Mike Nelson]

2. My mother is dying...

...I am so happy for the time we've shared, but she doesn't have much strength left. I feel exactly like your child. I would tell her the disease will go away, but your love for her will last forever.

[AutumnMist]

8. A hug for you as a mother...

and a hug for you as a daughter. Keep your chin up. I know it can be so hard. :hug:

[bicentennial_baby]

15. Same here, friend

:hug: I miss my old Mom...sigh.

[pink-o]

25. Me too. I lost my mom just after New Years

...but she was 82 years old. I had her in my life for 52 lucky years.

I'm so sorry you're going through this, Autumnmist. It's so fucking unfair that good people like you have to explain this to your family while the fundies do whatever they can to stop stem cell research. My thoughts are with you and your loved ones.

[blondeatlast]

4. My son has dealt with the same issues. My health has been

all over the map the last few years and my down period began shortly after he started kindergarten (secondary complications from lifelong insulin dependence).

That "I want the old mommy back" goes right to the carotid, I know--I heard it too.

Just love each other, treasure each other, and enjoy those moments for all they are worth. Kids are resilient--after my mini-stroke my son became quite a man and continues to do so when Mr. B travels. He was only 8 at the time, too.

Just follow your heart and you won't make a mistake--and know you've got loads of support. :hug:

[AutumnMist]

10. Back at ya!

:hug:

[PetrusMonsFormicarum]

5. Sounds like

you are already handling it well, Mist, specifically: keeping your child in the loop regarding your illness. She sounds young to be processing something like that, but ultimately it would be more hurtful if you had kept the knowledge from her.

I don't know your particulars, but I think you should tell her (not necessarily during the quiet time you described--maybe a more active, laughing time) that her strength--just being who she is-- is something you need. And then keep laughing.

[AutumnMist]

13. Honesty

is always the best policy in my opinion as well. I have always taught her to speak her mind and I have always tried to make it clear that she could come to me and I would answer her as honestly as possible as well. We went apple picking at a farm last weekend..just Mom and Hannah time. I love those moments. Because (just like you said) I dont want her to be the daughter of a sick mom. I just want her to be Hannah. :) Thank you so much for the advice.

[Mojambo]

6. You may already be in a support group

But I found this site that has a message board and listings for actual support groups.

http://www.yopa.org/page/page/1702945.htm

I'm sure someone else has gone through exactly what you're going through with your daughter.

Sounds to me like you guys have a really strong relationship.

[AutumnMist]

14. Great website!

Thank you. :)

[JohnnyLib2]

7. You are doing fine. She asked the question and gave her opinion

because you were right there and receptive and reassuring. When you think about it, you don't like the disease and you would like the "old Mommy" back, too. So, keep the lines open and the hugs coming, good mommy.

(probably should add that I sometimes work with the children of patients)





:hug:

[irish.lambchop]

9. Was the right thing to do!

Honesty - always - in the best way that they can understand. My sister-in-law has MS and still hasn't told her sons (my nephews) - they are 12 and 7. It is always hard when family is together because they ask me, "What's wrong with Mommy?" Children "know" when things aren't right. They need reassurance and that's exactly what you did. Information and communication is a powerful tool - no matter the age. I can't help but think how my nephews will react should, Universe forbid!, she take a turn for the worse.

[AuntPatsy]

11. My aunt has it and with the proper medication you will have no problem

doing the same things you have always done. she told me once that she cannot miss her scheduled does or she begins to feel the effects of the disease almost instantly so therefore she takes them on time and by doing so she does great.

She took care of my grandmother in her last days by herself, my grandmother though obviously thin is a five foot seven woman and not exactly lightweight and was incapable of doing even the most menial activity. she kept the house clean and was able to pick up my grandmother to bathe her settle her in different areas like moving her to chairs, the bed etc..

Don't worry, as long as you take the medicine available you should be just fine, she has had it for around ten years now and is always in good spirits.

[AutumnMist]

17. Yep!

The meds do work. I have been on them for over a year. I cant do the things I did like before exactly. The fatigue gets to me. But the medical advances have been so amazing for me. My right side is almost so weak I cant hold glasses and forks on many days. But I also have brain lesions that are hindering some of my movement. The problems that I have physically often clash with the fact that I have a young family and I myself am still relatively young as well. I cant slow down much. Thank you for the input! Its always most appreciated. Tell your Aunt to keep up the amazing things that she is doing. :)

[AuntPatsy]

26. You know its possible that perhaps they can either add or change your meds.

My aunt told me she went through several different medicines and is taking four of them at the present time to find the right ones that worked for her, like you just stated, the fatigue you get but can overcome even on the meds, but perhaps a different melee of meds could help the weakness you feel while holding things....

I love that woman, never met anyone as content with her lot in life as she is, I swear if anyone was ever feeling down, she is the one to be around, highly intelligent, and full of life and hits each new day with the same zest she had when she was younger..and she ends each day thankful for even the smallest things in life...

But like I said, she went through a variety of different ones, I seem to be having the same things happening to me that preceded her disease so I do attempt to keep track of what is available out there, my doctor told me its entirely possible that I too can get it but knowing how she has dealt with makes it easier for me just in case.

editing to add that the doctor told me that there is no blood test or medical test available at the present time to tell you you have parkisons, you just get the symptons, he said restless leg syndrome could be a sign of the onset of the disease, it still is not know yet but the thought is there...anyway good luck...

I know she has gotten scared though at times when she was a bit late on her meds, she said she could feel her body almost stopping as in her movement, I think that one small fear she has ensures she stays on top of taking her meds.

[AutumnMist]

28. I have an appointment with a specialist on the 27th

and my hope is they can change my original medication and move on to a more customized regime. I was in my early thirties when all this started and I was so young my own PCP didn't know what to do. I try to wake up and see the world in the same great light that your aunt does. It does make such a huge difference. Hugs again. Your aunt sounds like an amazing person. Its not just her meds. She has met life head on and made the choice to be positive no matter what. Thats half the battle. Good for her. And good for you for loving her.

[AuntPatsy]

30. That is so sad, i didn't realize you were so young, she was in her fifties which I am fast

approaching, and your right that having a positive outlook is half the battle, as for loving her, I don't know anyone who doesn't, its pretty easy to. I just wish I had been closer to her in my youth but her habit intimidated me a bit, but thankfully she no longer has to wear one, nuns are allowed to wear regular clothing...

She took leave from the convent when my grandmother became to ill to take care of herself, with four sisters and one brother you would have thought she might even at times be resentful that she pretty much had full care of my invalid grandmother but not her, she relished the time she got to spend with her regardless of she herself being ill...

Its funny, she also taught me that one need not throw their beliefs in one's face to prove they are good people, actions speak louder than words she always said, and for the record, she does not like this current prez and hasn't since day one, she is very politically savvy for a nun and considers pandering to the religious right unethical for a politician, an amazing person.

[AutumnMist]

31. I would love to meet your aunt

she sounds like someone who has an amazing light and extensive knowledge. People like that are not a dime a dozen. A very cool nun indeed. When you see her again give her a gentle hug for me. :)

[me b zola]

12. Good thoughts & wishes to you and your family

I have no advice to lend, just wanted to send a little support. :grouphug:

[AutumnMist]

18. I dont have much of a comment either

but hugs? They are always free and in unlimited supply. :hug:

[monktonman]

16. Sorry to hear about your condition.

I've battled drug addiction my whole life.
For the most part I managed to sheild my son from that.
now he's a teen-ager and wicked smart. He asks lots of questions about things
that happened when he was younger. (been sober a few years now)
The best thing I could do is be as honest with him as I think he can handle
and do my best to lead him down the correct path.
As a result he has been very, very supportive of me and my sobriety
and thats what I need the most.

Your daughter loves you very much
just be as honest as you can.
bless you.

[MoonRiver]

19. I think I read your husband's post last night.

Your daughter is beautiful and apparently brilliant. She's doing great and you are one of the, two, reasons why! Just keep loving her and doing what you've been doing.
:hug:

[AutumnMist]

21. You know parents are always jaded with their own. :)

Life is a day to day thing and we are doing our best and finding the joy in it when we can. And that I think that is the true blessing of just being alive and together. Thanks friend. Todd (AKA Straight Story) posts much more then I do. But he is also a very gifted man. I am a blessed woman. Thank you for spending your time here on the thread. :hug:

[Old and In the Way]

20. My admiration to you and blondatlast.

Raising kids with your full health is difficult enough....I can imagine how much more challenging it is when you are burdened with health issues. You both sound like you are managing quite well...very best regards and, of course, :hug:'s

[AutumnMist]

22. My admiration for you

for saying what you have. I have lost friends who just couldnt handle what happened and then silently drifted away from my life. Friends like you are always welcome. But more importantly your heart is in the right place and thats something to admire. Thank you! :hug:

[xchrom]

23. i can't imagine someone handling that better. i really can't --

it was about text book perfect -- she had room to express herself -- room to resist -- but with great love you let her know -- here it is.

how very, very difficult this must be for you -- and her.

peace be with you, atumnmist --

[kitkat65]

27. The fact that she knows she can share her worries with you speaks volumes

You did good! I think the more you hide, the more kids worry about what you're not telling them because they're not stupid and can pick up on stuff like that.

Prayers to you and your family.

[emilyg]

29. Big hugs to you.

[AutumnMist]

32. .........

:hug:

[blondie58]

33. (((AutumnMist)))

You handled it just right. Gosh, this just reaffirms my idea to live life to its fullest each day, you never know what life is going to throw at you.

As for myself, I was diagnosed shortly after my divorce with ms. I had no idea what the disease even was, my perception was a person in a wheelchair with drool coming down their chin. That first year though, I learned everything that I could, as knowledge is power and I also got on some bulletin boards for support, which I found invaluable. The people on these boards know what you're feeling. One of the best was http://brain.hastypastry.net/forums/ and they also have a forum for Parkinsons. I learned so much and was able to talk with others that knew what I was dealing with and I spared my family the need to talk about it or worry about it.

Here is is, nine years later, and I am doing pretty good for the most part. I wish you the best and good luck in the future. It may not be a bad as you fear, it does sound like they have some new drugs.

[SalmonChantedEvening]

34. Read to her again tonight, and find great solace in knowing

How perfectly she loves you.

Strength and health to you AutumnMist

:hug: :pals: :loveya:

[Steven_S]

35. I really appreciate you sharing this....

I am struggling with a somewhat similar issue. When I was diagnosed with ALS in March I couldn't bring myself to tell anyone. It was a month before I told my wife.

My 12 year old son thinks I have something like MS. (like Mom's friend Lisa)
We plan on telling him something closer to the truth soon. Probably the truth would be better.

It would be easier if it wasn't terminal, or the prognosis wasn't so grim.

In the meantime we are indeed enjoying our lives to the fullest, the best we can anyway.

By the way, I admire the way you handled it. I think you did the right thing. :)

[blondie58]

36. (((Steven S)))

I am so sorry. I wish that it was MS, it can be dealt with. Doesn't Steven Hawkins have als? and if so, how has he lived so long, albeit disabled? I wish you much happiness and peace.

[Steven_S]

37. Thank you blondie...

Stephen Hawking has had ALS since the early-mid sixties if I remember correctly. He is of course an exception. Only a small percentage go past the typical survival rate of 3-5 years after onset of symptoms.

I have no idea what the numbers will be for me, of course, but I always figured to just go as long as I can anyway. The illness certainly changes things a bit though.

[cboy4]

38. Ughhh. You're a good writer AutumnMist...that made me tear

up a little bit thinking about your little girl.

It seems like you're handling things as well as can be expected, and you sound like a great mommy. :)

[SeattleGirl]

39. I think you handled it very well, AM.

You gave her the truth (on that 6 year old level), and she gave you the truth back.

Some truths are not easy to deal with, but it's so much better to tell the truth, than try to hide it, or lie about it.

My mom is going through some pretty bad health stuff right now, and even my almost-4-year-old nephew understands that he can't jump on Grandma, and that he and his mom have to spend greater-than-usual time there. He's adapting to it very well.

[From The Ashes]

40. Autumn...

...I think you handled it just fine. It's better to speak the truth with her. :hug: