Hello

A forum for parents with multiple sclerosis, and how to cope with family life when a parent has MS.

Hello

Postby sofia » Wed May 05, 2010 5:00 am

Since I asked for this forum, I better introduce myeself.
I'm 34 years old, I was diagnosed in 2002, had my first child in 2006, a boy that is now 4 years old, and my second child in 2007, a little girl that is now 2. When I decided to have kids, I was doing fairly all right. I ahd been ill for some years, but did not have much bother. Thinking my prognosis was pretty good, not fully realising the impact this disease of ours could have on my life.
I think the biggest challange of beeing disabeled is fetching up kids. They get sad, and my eldest is even a bit worried about me. Questions I ask myself is how much should I involve them, how much info do they need. They do wonder why I can't play with them, they don't understand this about good days and bad, when they are this young. And I suppose as they get older, we will face different challanges. They migth be scared and worried, embarassed, sad etc.
Now the biggest struggle is practical problems, how to arrange the day, as they are depending on me for daily care, later on it might be more a financial question as they get more expencive as they grow up, with the wants and the demands of todays children, we have suddenly become a one income family. How best communicate with them, what to say and how much to explain I think is the big question.
How much to involve them, but not putting stress on them, and give them to much responsibilities, that will steal away their childhood. How to find the balance.
Just thinking it could be nice to talk with others about things as thing come up.
sophie
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby TeachX3 » Sat May 08, 2010 4:40 pm

Hi Sophie :) I'm Dannielle. I am familiar with the daily struggles you speak of... for me, it was this: '91 first child born, '92 second child born, '93 diagnosed with MS and '94 my last child was born. So, I had little ones when I will still new to MS. I must say, I was always very open with my kiddos... they were raised with quite a bit of responsibilities, we had certain rules that I'm sure other families did not because of my MS (simple things like things must always be placed in their 'home', for the days I was having vision problems, so I could find them... to more important things like when Mommy was having a 'bad' day, they would have to step up and help) I am sure this did force them to grow up faster than other children, but it was a necessity. We were always a very loving, supportive and family oriented family... and they were always more mature, responsible and caring than their peers. My 'babies' are now 19, 18 and will be 16 this fall and I have to say, I would not change one single thing... they have grown up to be very wonderful young adults and I am very proud!! Anyway, just letting you know there are others out here who know what you struggle with... take care girl! :D
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Postby bluesky63 » Sun May 16, 2010 8:07 pm

I have time for only a quick reply -- but I am a single parent to three great kids, ages 19, 14, and 11. I have been affected by MS as long as I have been a parent! I think one of the most important things we have done is be open about MS, not hide or sugarcoat it -- and no doubt my kids have had a very different experience than many other kids they know, but we are a loving and close family. :-)
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Postby Jackie_D » Thu May 20, 2010 9:36 am

Hi, I'm new here. I'm 28 years old (will be 29 in June) I had my first daughter, Savanna, in June of 2003; my second daughter, Kinsley, in November of 2005; my first son, Braedon, in March of 2007; my third daughter, Grace, in August of 2008; I was diagnosed in October of 2008 (never had any noticeable problems until after Grace was born); and now I'm expecting my second son, John (but we're going to call him JD I think), in August/September of 2010.

My children are all very small still, but we are very open about the MS. They know that sometimes Mommy has sick days, but we always reinforce just how much we love them to try to make up for it. It IS hard dealing with the MS and small children, but I wouldn't change it for the world! :)
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Postby prauly » Wed Jun 23, 2010 4:32 am

Hello all, This is a great forum. I was recently diagnosed and am still struggling with my emotions and also still overwhelmed with the information that is being presented to me constantly by the doctors, drug companies, and friends who 'know people with MS'. Much of my concern is for my daughter. I think that the Sophia posted my thoughts and concerns perfectly, and the rest of the replies helped those concerns.

For the last year I have had symptoms, but had not been diagnosed until recently. My daughter is an only child, so she always looks to us to do fun things with her when her friends are not available. Some of those activities that we used to do, are just not doable on some days! She is visibly frustrated when I tell her that I cannot because I am having a 'bad day'.

I do believe that there has been a slight shift in her attitude since my official diagnosis. My husband and I tried to explain MS and the struggles at her level, but in more depth. My husband basically told my daughter that if mom asks you to do something, do it without hesitation or argument. And, so far, she has been much better with helping. So, maybe the diagnosis helped her turn a corner! You see, we have a contemporary post and beam house with 4 levels. Sometimes there are things on one level and I am on another. That is where I ask for her help the most so that can reserve my energy!

I do still worry about her being impact by my limitations. Example, I live in a community where there is heavy 'mom involvement' in the schools. I also work full-time, sometimes from home if needed, but I just can't tack on mom duties at the schools at the end of the day. I do what I can, when I can, but its difficult to commit to anything in advance because I don't know what state that I will be in.

Well...I am sorry for rambling on, but I think that this forum will be perfect for us moms! Thanks Sophia for asking for it.
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Postby REDHAIRANDTEMPER » Thu Jun 24, 2010 1:31 pm

wow this is a great forum to have..i have been away for awhile from the site and love seeing this one here..i am still waiting for the dr to get the offical word its ms..its the we dont see lesions but its what you have but we have to wait for the lesions..got to love medical stuff..i have 5 kids and two soon to be stepkids total...my oldest ones know about it and help out whenever they can and yes they worry but when they get down i always tell them not to..i always try and keep a postive outlook on it and they should to..be thankful for what we have now and not worry about later...my younger ones kinda understand it but arent quiet to the age to fully get it..i try and hide it when i am tired or anything like that..unforantly my kids have watched and know when that is..so i hear mom its time to go sit down dont worry we will do it..never thought i would be told by one of my kids to sit down and relax until i was in my 80's...i do alot of thinging with my kids now cause i know when they get older i might not be able to...kinda of scary but try and not think about it...
thanks for this forum its a great thing
waiting for answers
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Postby sofia » Tue Jul 06, 2010 2:50 am

Hello
It was nice to see activety here, I sort of forgot about this forum for a while :-) But I have bben very caught up in ccsvi and liberation lately.

We got a 12 feet trampoline in the garden. My 2 year old did not like me getting on, and told me to get off, she did not enjoy bouncing with me. I didn't do as she said straight away.

Then she told me : "mammi, you can't be jumping now, mammi you are lttle bit poorly now, mammi you need to rest!"

How many times she must have heard
- No mammi cant be xxxxx, cause mammi poorly now, mammi need to be resting!
Poor little thing wanted to use it to her own advantage for once :)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby harpgirl » Sun Jul 18, 2010 3:16 pm

I love this topic too. I am part of other mom groups on facebook, but no one can relate to what I am facing with the MS. So I keep to myself, and relate to them in their world.

My name is Cindy but go by harpgirl as I am learning to play the harp. I have two boys 10 and 4, and am 41 years old. I had three miscarriages in between my boys. I wanted a girl, love my youngest, absolutely. Tried to adopt through foster care for over a year, but no referrals. Can't have any more myself, and really wouldn't want to try. My hands are full, but the desire comes for more children and know it isn't realistic. I keep thinking one day, as each year passes. Don't know what will truly happen (we are an approved adopted home, but have taken our names off the list.) My husband completely content with our family unit as it is, but supportive of me no matter what.

I did struggle with how much to say or am I doing the best job type of stuff. Not any more. I always shared in a way that was child sensitive and only progressed with what I thought they could handle at the time. My youngest, 4, just knows I get tired and I have a sickness that makes me tired. So, my husband and the boys go out to eat during those times or just let me sleep. In his world, I think he understand as he is more sensitive to me and says, "I am going to do everything you say, even if you say no."

- Cindy
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Postby msgator » Tue Jul 27, 2010 10:46 am

great to see this thread. I have often thought it would be helpful. I was diagnosed in 1999, had my daughter in 2004 and my son in 2008. I am very fortunate and don't have any fatigue issues, but can't run to save anyone's life, so we have fenced in our yard to keep the kids safe. My husband takes the kids hiking and on any excursions that require significant walking because neither my bladder or my legs are willing to do that.

I sometimes feel selfish for having kids, when I am certainly not the kind of mother on all levels that I wish I could be, but I feel like I am compensating pretty well and I really think my kids are better off with a mom with my issues than a lot of other parents out there.

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby REDHAIRANDTEMPER » Tue Jul 27, 2010 11:36 am

msgator..you are a great mom..if you are there every morning for your kids and there every nite when they go to bed..you are doing great..every mom does different things for their kids...as long as you are always there for them when they need you that is all that matters...my greatest fear is losing my long term memory which every once in awhile i feel is happening....but i write things down of my kids to read when they get older...or maybe they will read them to their kids..we are all great moms here..we just might have to do something in different wys but all the same i think we all do a hell of a job...
waiting for answers
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