How do you do it

Re: How do you do it

I was diagnosed with MS in 1997, so I had it several years before my kids were born. I vacillate between feeling really guilty and being okay with it. Some days I just do not have any patience - especially on pain days. Plus with the cognitive issues, I wonder if I make a lot of sense sometimes. I feel like in some ways my girls have had to grow up faster than other kids because disease is a constant reality in their lives. My husband has a lot of health issues, too. We have been sick 3/4s of this year. People forget MS is an autoimmune disease as well as a neurological disease and we get regular illnesses very easily, are sick longer, and have a harder time getting well. Sicknesses that take a regular person down a couple of days lasts weeks or months for us.

So although, in some ways, my kids are spoiled, they are also living a harsher reality than kids whose parents do not have a chronic disease. Don't be too hard on yourself. You didn't ask for this nor do you want it. If you are a bit soft some days, other days she will have to help you and face grown up realities that her friends will not have to face for several years. What I am saying is, she is probably not that spoiled if you look at the big picture.

Sometimes I think guilt and being a parent with MS go together like bread and jelly. Remember that all parents in perfect health and youth are not good parents. Your daughter will probably treasure these times with easy diners and snuggling even if they are imperfect.

Here is an article about it: Multiple Sclerosis - Parenting with Multiple Sclerosis

It's realistic, but so far (I have only read the first page), it is not very upbeat. Kids have all different sorts of parents with all different sorts of abilities and disabilities. Your dd may have a mom with MS, but she also has a mom who loves her very much and is very concerned about her well being. A lot of kids don't have that and would trade all the health for love and compassion. It's hard for the chronically ill parent to do all the things a healthy person can do. But to use an analogy from the article, I think it's worse for the child to have a father who doesn't want to play ball or do anything the kid likes or who just isn't there at all, than the father who wants to play ball and can't. Am I making sense?

Re: How do you do it

Well said, Lenora! That last line is wonderful. I often wonder how you do so much.