I was first diagnosed with MS in 2005, and my son Zander was born in 2006, while I was still adjusting to my illness. I can only view this timing as miraculous, as it had such an impact on me.
Iâ€™m sure every new parent finds that having a baby completely re-orientates your concerns and priorities, causing your natural instincts to kick in. Zanderâ€™s birth in the midst of my diagnosis distracted me, forcing me to focus my attention on someone other than myself. I found that becoming a parent completely changed my outlook (I knew it was going to be good, but I didnâ€™t realise how good) and it helped to centralise me, making me feel confident and optimistic about what the future would bring, and determined to find solutions to any problems that I encountered.
When Zander was a small baby, Sarah (my ex-partner) took care of many of the hands-on aspects of caring for him, as I was still adjusting and nervous about muscle control. Before my diagnosis I was a former Royal Marine and outdoor instructor, and after Zanderâ€™s birth I was determined to regain a decent level of fitness, both for myself and so that I would be able to be the active father, as I had always wanted to be. I began looking for other ways to stay active and build my strength, including physiotherapy, and Iâ€™m happy to say that I have taken part in several very physical challenges for charity, including completing the 24-hour Three Peaks Mountain Challenge in 22.5 hours, and the Clyde Charity Challenge.
Whether you already have children or have a child on the way, I believe in doing your best to focus on what you can do, rather than what you canâ€™t. Try to be positive and realise that an MS diagnosis does not always mean that you have to give up the things you love doing; just that how you do them might have to be revisited. I stress, this doesnâ€™t mean that your hobbies and interests are now off-limits.
In my experience, being open with Zander about my MS in a way that was honest but not above his level of understanding was really important. Children are very resilient and can handle changes, and they will always see you as you, not as your illness. Zander has only ever known me with MS, meaning that my boy has only ever seen me this way â€“ determined, stubborn, and driven (but always positive). Seeing these strengths will only instil determination in him. When I was training for the Three Peaks Challenge, Zander asked to come with me on training walks- which were long and hard for a two-year old â€“ but he would keep going even when I gave him the opportunity to stop. Later on, when I was completing the Clyde swim, he accompanied me across the Clyde in the boat the MV Synolda, shouting encouragement as the shore approached – â€śNearly there, Dad! Only two more miles to go!â€ť. He insisted on swimming the last twenty-five metres with me, arriving on the shore to applause.
I think that you can use some of your experiences as a positive, a tool to teach your child. When Zander was a small boy, he was due to have his first jabs, and was incredibly nervous. I happened to have a doctorâ€™s appointment the week before and took him along to reassure him. Seeing me laughing and talking to my doctor as he took blood showed him that there was nothing to be afraid of, and Iâ€™m proud that I was able to use my experience as an example to reassure him.
When it comes to playing and bonding with your children, I think it helps to have common interests that you can enjoy together. Iâ€™ve always enjoyed being physical, so bike riding and swimming are two activities that Zander and I have been able to enjoy together since the beginning. Balance is easier on a bicycle, and walking is easier in the pool, so itâ€™s a hobby we can enjoy and a way to build up your health.
In some ways, you might have to adapt some of your parenting techniques- when Zander was a toddler, I was perhaps quite strict, so that he knew he had to stop when I told him, as I might have struggled to catch him in time if he ran towards danger.
My experience of parenting with MS is that having a child is an overwhelmingly positive experience, which can give you the motivation to keep pushing hard, to tackle your problems, and to look forward to the future. Every day, I wake up at 7 am and remind myself that my son has never known me without MS and therefore it doesnâ€™t define me; I am bigger than my excuses.Thinking positively has helped me immensely, and I must stress that my experiences with MS have not been what I thought they would be when I was first diagnosed.
I hope that this post is helpful in some way, and that my experiences can help to spread some reassurance and positivity to everyone reading that being a parent with MS is truly possible and very rewarding.
Â© Genzyme Europe B.V.
Date of approval: May 2018