Firstly, it’s really important to be honest with your kids when you have MS. They understand more than you think. They can get the wrong end of the stick if you don’t give them the age appropriate facts on how your illness affects your life. You don’t have to do this alone. My local support group gave me a brilliant book called “My Mom Has MS and She's Still the Best” which I included in the bedtime routine. The MS Readathon is also a wonderful way to educate your little ones and their friends. The aim is that it will become normal to your kids that MS is a part of your family life.
Every once in a while, I ask the kids how they feel about my MS. I want to make sure that the door is left open if they ever want to talk. So far, I have only received responses like “Not really…. Can I have an ice-cream when I finish my tea?” but they know that I am there if there IS anything on their minds. I think that sometimes we don’t give children as much credit as they are due. I have had (albeit undiagnosed) MS symptoms for as long as I have had a family. They know I have to take my meds, that sometimes I have to cancel plans and that I can’t walk too fast. They have accepted these facts a lot quicker than I did!
The next thing is that if you are a parent with MS, it’s really important to always have a backup. Plan B can often turn into Plan C when you have an unpredictable, chronic illness. It’s critical to have support networks in place so you can strike a balance between having a family life and MS. If I need to spend unplanned time in the hospital due to a relapse, it’s important that my children know what’s going on. I would hate for them to feel scared or that they don’t matter. Have a drill prepared so that things go as smoothly as they possibly can. Make sure you accept constructive help- otherwise you will be left to do it all on your own.
I used to panic about things that COULD happen to me. “How would I manage if I could no longer take care of my kids?” “What if my husband decided that he hadn’t signed up for this and left us?” “What if my kids felt ashamed that their Mam has MS?” None of these things have happened and I decided to banish these negative, destructive thoughts. I try to look on the positive side and enjoy the extra time I now have to watch my family grow up.
My last piece of advice is to find some friends in a similar situation. People you can compare notes with, have a laugh with and talk through the tough times. People with MS know what it’s like to have MS and parents know what it’s like to have kids - so a fellow parent with MS should get where you are coming from. I asked Karen, a Mammy with MS I know, to read through this blog to make sure I was representing what it’s like at the coalface. Keeping it real - so to speak.
Having children is hard. It’s hard for everyone. It’s also incredibly rewarding and I don’t regret a second. I hope that I have given my kids the right information at the right time to help them understand my MS. The regional MS Ireland office in the North-East holds a weekend for teenagers where they get a chance to talk to their peers about having a parent with MS. How great is that? Please remember that you are not alone if you are struggling to find a balance between MS and parenting. Find a kindred spirit you can relate to and enjoy the precious moments with your little ones.