Living with Multiple Sclerosis

Well, I decided it was time to get this over and done with. Let’s address the ugly elephant in the room. I have Multiple Sclerosis. So do a lot of other people. Unfortunately, I don’t know as much about the disease as I should. I think some of that is denial and some of that is time. I also am raising two children with Autism. I know much more about that topic as I do Multiple Sclerosis. Reason being is that I feel it is my job to help them. I know I should know more about MS and I need to make a point to educate myself on it. Unfortunately, I just don’t think I am ready yet.

Let me start at the beginning with my children. Or even go farther back than that. I wasn’t raised in a typical 2 parent house hold with a dog and picket fence. Seriously, in this day and age, who was?  I was raised in very typical divorced house hold with step parents, step siblings and where nothing was as it should have been and everything was not as it looked. You learn how to survive. I am now able to look back and see how this made me who I am today and I am grateful for it. I am not breakable and I do not bend easy. Sometimes that is a downfall, but for this life… my life, it is necessity.

Enter my children. I have a BEAUTIFUL daughter whom I have fought a lot for.  I had a very hard pregnancy with her and I am blessed to have her today. She was born premature and I had one of those crazy ideas that the hardest part was just going to be getting her here alive. Irony. I often joke about God and his sense of humor. And how you have to know that you aren’t in charge of everything, or really anything and you have to learn to roll with the punches. Caitlin is my punch. She is the one who lets me know that I can’t control everything, or even anything, anymore. Life was simple before I had children. But life was also boring. I describe having children as living in a black and white world and then all of a sudden, you are slammed with 360 bit color. It is so loud and so bright, that you have to just sit and absorb it for a little while. Every sense you have is now on steroids. You have to learn that the world really doesn’t evolve around you and it really doesn’t matter how tired you are or how hungry you are… you have someone else that is even more tired and hungry. Now everything you have ever wanted has immediately changed and your life goals are different. You go from wanting the sports car to wanting the minivan. And somehow you are ok with that. You definitely don’t mind it at all.

Finding out that you have a child with Autism is scary. There was a moment where I thought why me. But more importantly there were a few moments I thought WHY NOT ME? I can fight for her. I am strong. I can get her what she needs. I will dedicate my life to her. And I want her to succeed. And with that comes the hard line that I have to draw every day. Ok, so you have Autism. So what? Does that mean you can’t brush your teeth? Does that mean you can’t sit in your chair? Does that mean we can’t go out in public and do typical things like other families? No. It doesn’t mean that at all. It means that we have to try harder and do it in our own way. I have never allowed either one of my children to use Autism as an excuse for anything. It just means we have to find other ways to do things. It may take longer, we may have to make allowances somewhere, but in the end, my goals are the same. And that is to raise two children to be responsible adults and live their lives as independently as possible.

Now this is where the MS comes in. A few years ago when I was diagnosed, I was really angry. Not about the diagnosis. Because honestly, what can you do about it? Being angry with God isn’t going to get me anywhere. Self pity isn’t going to help. I was angry at how everyone immediately became upset when I told them about the diagnosis. Of course it is bad. Of course this sucks. I am ok. This could be worse. I can live with this. It will just change the way we do things, but it isn’t going to stop me from living. I want to be strong and be a role model for my kids. I cannot allow MS to hold me back. I cannot allow MS to be an excuse to stop living my life. It has been hard and there are moments when I want to just curl up in a ball and give in. But I can’t. I can’t leave my husband here with two kids…these two kids. And giving up has never been my nature. Raising my head up and carrying on has ALWAYS been my plan. So what, I have MS. I need to get on with my life. And I think I tend to do what most mothers do when it is a choice to care for your children or care for yourself. I know I need to take better care of myself, and I do plan on doing that soon. But taking care of my kid’s keeps me focused on something that I can do. I have control over that.

So my commitment on paper is to learn more about MS. I want more of a say so in my treatment and not just roll over and take any medication that the doctor recommends for me. Medications have side effects and side effects affect my day to day life. I have told my kids that they have Autism, but Autism doesn’t have them. It doesn’t complete them. And MS will not complete me. I am just one person in the world with a few challenges. Everyone has challenges. Some people just have it worse than others. There are a ton of people out there who would trade places with me in a minute. The chance to be in a happy marriage with two beautiful children is a blessing. We just happen to have Autism and MS. I will take it. I will take what God has to offer me. There is a reason and I am not sure about it yet. But there is a reason.

So any day that you feel down. You feel over whelmed. You ask yourself “Why me?” Stop and think about why this is happening and what can you do about it? If you have a choice and can do something, then get up and do something about it. But when you don’t have a choice, then you have control over one thing. And that is you. How do you CHOOSE to handle this? How do you CHOOSE to feel? I choose to feel blessed. I am SO very lucky. And I am happy. My kids are happy. My husband is happy. And that is all we can be. That is what we have control over. Our feelings and what we plan to do about those.