Facing Forward Stories shares real stories from parents and parents-to-be living with chronic illness and disability—highlighting both shared experiences and unique journeys. Through these voices, we offer connection, representation, and encouragement, reminding readers they’re not alone and that there’s no single way to keep facing forward.
Since being diagnosed with multiple sclerosis after becoming a mom, Heather has learned to balance the desire to keep up with her two young daughters with the realities of her physical limitations.
By asking for specific help, leaning on her husband and community, and making practical adaptations, she continues moving forward while also acknowledging the very real grief that can come with missing out.
| NAME: Heather PRONOUNS: she/her LOCATION: Weston, CT, USA DIAGNOSES: Multiple Sclerosis CHILDREN: 2 girls, ages 5 and 3 |
What came first for you: chronic illness diagnosis or parenthood?
Parenthood.
What have been the biggest challenges you have faced as a parent or parent-to-be living with chronic illness? How have you adapted to those challenges?
My hardest challenge has been physically keeping up with my active, young children. They want to go everywhere (parks, playgrounds, beaches, trails, etc) and I find myself torn between wanting to explore together and whether or not something is physically too taxing for me. I also find mornings incredibly challenging, particularly when my husband is traveling for work, which happens often. It takes a TON of stamina and endurance for me to wake them up, help with brushing teeth and toileting, make breakfast, pack lunches and backpacks, get them dressed, sunscreen on, doing their hair, and getting them out the door in time for school or camp. I’ve already used all my spoons for the day by 9AM, and then I need to start my work day.
In terms of adapting to the challenges, I am incredibly fortunate to have a great husband and village. My husband is always willing to take the girls on adventures or someplace active; he knows I appreciate the down time. I am also so lucky to have friends who are always willing to lend a hand when I am not physically up for it; whether it’s inviting them over for a playdate or taking one of the girls to use the bathroom when it’s far away. I also have to add there is a tremendous amount of grief that comes with adapting. I am incredibly grateful for my village and it’s hard not to think about all the moments I miss out on.
What does a typical day look like for you and your family? Are there specific tips or systems that help your family function day-to-day?
When the girls are at school or camp, I do my best to pack lunches and pick out clothes the day before so that mornings can go more smoothly and to prevent the need to go up and down the stairs to the bedrooms several times a day. I also am not shy about asking for accommodations when something requires a lot of walking or idling. I park the car as close as I can, and I tell school/camp/activity about my physical difficulties in advance so they can assist me if the drop-off or pick-up points are a distance from the parking lot. Thus far, everyone has been very gracious and accommodating.
How do you talk to your children about your illness?
I haven’t told my 3 year old yet because she is young, but my 5 year old is more aware and notices that I use a wheelchair to get transported around at the airport and I walk slowly with a slight limp. I decided to share bits and pieces at a time with my daughter. I started with 2 children’s books about having a mom with MS. It helped her to easily understand and relate pages and pictures in the book back to me. I call them our “Special Books” and she enjoys cuddling and reading them before bed. They were tremendous in beginning the dialogue about my MS; naturally, she asks lots of questions and all the while I am teaching her about my symptoms. I will begin reading these books to my 3 year old as she gets older and as both girls get older, I plan to share more with them.
What kind of support has made the biggest difference for you?
The support from my husband has made all the difference. I am incredibly fortunate to have a true partner, in both parenting and life. Not only is he always willing to do the heavy lifting with the girls, but he also has empathy for how I feel on a daily basis and is always willing to lend a hand when I am struggling.
The other kind of support that has made the biggest difference comes from those around me who take action to make my life easier. The ones who’ve offered to pick me up so I do not have to drive, who’ve sent me food on my infusion days, who will chase after my kids at the park, come over just to hang or play mahjong, or lend a hand with my kids when I am having physical difficulties.
What is something you wish more people understood about parenting with chronic illness?
It is crucial to be able to ask for help and be specific. Rides, carpools, playdates, water on a hot day, help getting to a shady spot, etc. Moms have a hard time asking for help; we think we can do it all and yes, of course, we can, but chronic illness throws a wrench in that plan. People are more likely to help when something specific is asked of them; “let me know if you need anything” doesn’t usually require follow-through.
If you could go back to the day of your diagnosis, what would you tell yourself?
It’s going to be hard, but it will be okay. You are more resilient than you think and something I always tell my girls “you can do hard things.”
What does “facing forward” mean to you?
Being optimistic about the future; both personally and in terms of research. And, to always keep moving forward, in life, in mothering.
Here’s where you can connect with Heather online!
- Instagram: @msmom_therapist
| 🌿 Facing Forward Moments: Heather’s Recent Parenting WIN! 🌿 Potty training my 3 year old; sometimes the ‘normal’ milestones feel like the biggest wins. |
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