Saturday, July 18, 2009

How Much Stress Does MS Put On Our Daughter

My wife and I chatted awhile today about how much our daughter has dealt with concerning my wife's Multiple Sclerosis. My wife was diagnosed with MS over 20 years ago and always wanted four children. We were blessed with one beautiful young lady who is twelve now, and has dealt with her mom's MS since birth. We have come to realize that my wife's MS has had a part in shaping the way my daughter views disease, the world and life in general. Even at twelve, she still doesn't understand all of it, but she is affected by it almost daily.

Right after we were married my wife and I spoke with Dr. Roy L Swank about how Multiple Sclerosis would affect pregnancy and us having a child. Dr. Swank explained that my wife could have a child and that we just needed to plan well for the birth, and for my wife to follow the Plasma protocol. The pregnancy went smoothly and the birth went without complications. We followed the Plasma protocol and my wife felt great during the first few months of having a newborn baby. She breastfed our daughter and went through all of the sleepless nights without any issues. I tried to give her time to rest as much as possible and she had limited issues during the first few years of our daughter's life.

The few issues she did have could be traced to specific circumstances. I don't know that our daughter experienced the first few years of her life any differently than any other family. Just like we do now, my wife tries to rest often, eat right and de-stress as much as possible. As our daughter moved into the third and fourth years of her life she probably noticed that mommy needed rest often and that we didn't participate in everything because it wasn't always the best timing. As I write this I can't think of anything in particular that would have left a large memory of the disease during those first years.

At five, our daughter had her first major experience with my wife's MS. My wife went numb from her chest down for over a month and our daughter actually remembers her mommy not being able to come to some of the school functions during that time. My wife couldn't walk or really even hold her during this time, so I was taking care of our daughter and her. I know that there were moments that my daughter was scared and didn't understand why mommy wasn't able to do normal things. She would ask some hard questions and I did my best to explain, but it never felt adequate. When my wife did get better and could walk again, you could tell a difference in our daughter. She had been holding stress through this whole time and that stress showed itself in all sorts of ways.

Since age five, our daughter has learned more about the disease and how it affects her mommy. She has expressed fear, anger, sadness, hurt, disappointment, hate and a range of other emotions concerning how MS has affected our family. There have been activities we have not participated in due to the disease and she knows it. Sometimes she becomes angry or jealous of her friends when we can't participate and sometimes it is hard for her to accept. She and I have had many daughter/daddy talks about how our attitude affects her mommy's health and sometimes I feel really bad about how much pressure that puts on her.

She is an AWESOME daughter and she has had to deal with some major struggles over the years. I can't imagine having to deal with those issues as a young man like she has. She has her moments when the stress of it all comes out and sometimes she will lash out at my wife. It is hard to watch, and it pains me to see the hurt on my wife's face when my daughter blows up on her, but she handles it so well. I asked my daughter to write a blog a little while back and she started writing about MS from her perspective. It was interesting to see how her young mind processes the disease. Not too long ago she asked the question I have dreaded from the beginning - "Will I have MS since mommy has MS?". That was a day full of a lot of praying that I would have the right words for her. Being a dad is hard enough, but try to explain a disease that no-one understands to a young girl that is worried she will also have it. It can make for some sleepless nights. I know that my wife's MS has caused some stress for our daughter and I pray that she will come to view MS as I do, a chance to bless our family and others.


Phil said...

Hi Cory

I've been following your blog for a while now since I've been dating a girl with MS. It helps me to read about your experiences with MS and how you deal with it. point for commenting on your latest blog is although this doesn't deal directly with MS, I've observed children being raised with a disabled parent. A very long time friend of mine has a mom with disabling arthritis. I grew up with this family as they were very close friends of my family. It amazed me as the girls got older, they grew closer and closer to their mother. They always understood that mom couldn't always do everything and were always there to help (button pants, open bottles, etc.). Arthritis made them into a closer family than most. Those two girls grew up into some of the most talented, caring, successful people that I know.

Your daughter has a rare opportunity to observe life from a different perspective. She will grow up with more knowledge and will be used to helping. She has the advantage!

Thank you so much for your blog. I love to read about MS and how you deal with it. I think I'm on the same track and am prepared for the challenge.

Patrick @ Caregivingly Yours said...

Powerful entry! Our daughter was 18 months when my wife's MS roared into our family on Thanksgiving morning 1989. Now 21, our daughter has never known her Mom any other way.

I have taken the liberty of linking to your journal.

Caregivingly Yours, Patrick