Inside: A new baby can have you doubting yourself. Read on to find the best advice for new parents from 40 Moms with Chronic Illness and Disability and feel comfort in knowing that everything will be OK.
Preparing for your little one’s arrival is one of the most exciting and, yet, terrifying moments of your life. From making sure that the car seat is perfectly installed to repacking your hospital bag for the millionth time in a row, you want everything to go just right.
The truth is, no matter how much you prepare, life never works out the way you think it will.
Parenting with a chronic illness or disability
Like many young women, you probably envisioned your future self in the kitchen baking cupcakes for the local bake sale or practicing soccer in the backyard with your daughter.
But what you probably didn’t dream of?
When I was pregnant, I was absolutely terrified of what motherhood with a disability looked like. I imagined a burning house with no way of getting my son out, or accidentally dropping my baby and having child protective services knocking at my front door.
It would have been so helpful to have an article with advice for new parents like the one below when I was pregnant and freaking out. That’s why I wanted to collect a series of tips and advice for new parents that may be struggling with anxiety before their new baby enters their life.
Biggest Trends in Advice for New Parents
I was blown away by the thoughtful pieces of advice from each of the moms below. Every single one of these women has a unique story on how they’ve dealt with parenting while chronically ill or disabled.
I encourage you to click on their links and learn more about these beautifully strong women.
With that being said, there were a few trends that stood out in the advice for a new parents:
- Don’t dwell on what you can’t do.
- Continue to focus on your needs.
- Be kind to yourself.
The 39 women below have had to reconcile their health struggles with parenting, essentially learning to co-exist.
Best Advice for New Parents: From 40 Moms with Chronic Illness and Disability
(in no particular order)
1. Don’t Compare.
“My one piece of advice would be to work hard at not comparing yourself to other moms whether they’re disabled or not. Comparison can do really harmful things to you as a mother. You and your child will figure out your own unique way of doing things and it doesn’t have to look like anyone else’s way.” – Ally Hotch
2. Don’t Neglect Your Own Needs.
“As a new parent, you’re already exhausted, but taking care of a baby becomes even more challenging when you have a chronic illness. You’ll hear all sorts of parenting advice, often with conflicting viewpoints and strategies that it becomes overwhelming trying to figure out what’s best.
When these moments arise, go inward and ask yourself, what does my body need right now? We often neglect our own needs and wellbeing because we’re trying to follow some prescribed parenting method. If you’re tired, take a nap with your baby, and don’t feel guilty about it. If you’re able to get more restful sleep co-sleeping or vice versa, having baby in their crib, do what works best for you.” – Holly Reisem Hanna
“My best advice for a new mom would be to self-advocate and try not to feel guilty about it! Sometimes you have to be very clear with a partner or family member. Let them help, and insist they help make sure your needs are met. Say things like, “I need you to take over and let me take a long uninterrupted bath,” or “I need you to take overnight feedings some nights so I can get several hours of uninterrupted sleep.” Speak up about your feelings, so someone can help make sure you’re mentally okay, too.” – Corinne
4. Don’t Try to be the Mythical Supermom.
“When you’re a new mother living with chronic pain, expect every day to be different. Sometimes you’ll be able to manage your discomfort, and other times you’ll have to force yourself to rest. Don’t try to be the mythical “supermom,” because she doesn’t exist. Just do what you can, and ask for help when you need it. You may not be the same as other moms, but you’ll still be the heart of your family, and your baby will love you even when you need to lie down.
Sleep deprivation may cause flare-ups and also affect your mental health. Keep an eye out for this, and surround yourself with a strong support network. Please don’t let yourself get overwhelmed with guilt for something out of your control. It’s okay to feel sad that you have to sit on the sidelines sometimes.
You may never be “all better,” but that doesn’t make you a failure. Be compassionate with yourself, and set realistic expectations. And if you wake up to a bad pain day, just remember that a good day is just around the corner, which will make your time with your baby all the more precious.” – Tara Mandarano
5. Don’t Doubt Yourself.
“You’ve got this. Don’t doubt yourself because of your disability. Comparing yourself to others without a disability will leave you frustrated at times. You might think you’re not enough for your children, [but] YOU are the mom your children need. Remember that your love is unconditional and where you see limits, your children see their mom.” – Valeria Isaacs
6. Plan Ahead to Get the Meals You Need.
“As a new parent, you have to prioritize your health – so you can be there effectively for your child. For me, that meant communicating with my partner to ensure that I got three important things each day: a nap, a shower and a walk. All three made me feel more refreshed and back to myself. Also, if you’re on a special diet, plan ahead to ensure that you get the meals you need – tell friends and family about your restrictions, cook ahead and freeze, and/or order from a meal service.” – Casey Hibbard
7. Continue to Adapt.
“My advice would be – you were made for adapting. Parenting is no different. You will learn and then things will change. Continue to adapt. This is the best adventure you will take.” – Kerri Knudson
8. Fed is Best.
“I recommend taking on the “fed is best” mentality when it comes to feeding your baby. There’s so much pressure about “breast is best,” but depending on how well or unwell you are, breastfeeding can be very taxing on the body. Taking on the “fed is best” mentality allows you to put your health first and make the right decision for you and your baby, without guilt or shame related to how your baby is fed.” – Sara
9. Everything is Just for a Season.
“I think I would say remember that everything is just for a season. The nights that you’re only getting a few hours of sleep – that’s just for a season. The cute face and when they want to snuggle with you – it’s just for a season. So, embrace every season because remember it won’t last forever.” – Megan DeJarnet
10. Focus on the Things that You are Doing Fabulously Different.
“I think it’s really important not to focus on things that are difficult as a direct result of being different, but to focus on the things that you are doing fabulously different for you and your little one/s! This, at times, can be tricky of course, but it’s a wonderful learning experience that you can grow through together. No two disabilities are the same, no two mothers are the same, no two children are the same. YOU and YOUR FAMILY will work things out and that’s all that matters.” – Jo-Jo McQueen
11. Go Easy on Yourself.
“It is my belief that somewhere in the American Psychiatric Association’s Diagnostic Manual, there should be an entry titled, ‘Mom Guilt.’ The pressures put on mothers by society, family, spouses, jobs and most critically, themselves, is immense. I have never met a mother that feels like she’s doing enough or balancing life and parenting well the way she “should be.”
Moms self-talk themselves into thinking they’re “bad Moms” on a regular basis. ALL. MOMS. It can be paralyzing and most certainly can have a negative impact on a new Mom’s early motherhood experience. The guilt of not being a good enough Mom is unhealthy and is even worse for Moms with physical or mental health challenges.
Living and managing is hard enough before a baby enters the picture so a new Mom with a disability is up against a LOT of challenges and a prime candidate to suffer a massive case of Mom guilt. As a Mom with a disability that had a difficult early motherhood experience, I would beg any Mom with a new baby to go easy on yourself. Focus on enjoying your new baby. Nothing matters more than your bonding with your new baby. It’s a special time that goes by quickly so please enjoy it to the max!” – Miriam Stein Battles
12. Breastfeed Lying Down.
“Get yourself a stretchy wrap sling so you don’t have to use your arm strength to carry baby. Esp good for those clingy days. That, and teach yourself to breastfeed lying down – it’s an arm saver!” – Amy Millard
13. Do Something that Makes You Feel Like Yourself Again.
“The main advice I’d give to any new parent with a chronic illness is to sleep when the baby does and take help from family who are offering – even if it’s only for 1 hour. In the hour, do something that makes you feel like yourself again, like taking a long bubble bath or applying a fake tan. Even if it’s [only] one hour a week set aside for you, that’s your hour to just be you.” – Loretta
14. Don’t Worry About What Others Think.
“My advice for new parents that also have a disability is to forgive yourself. It isn’t about being perfect. It’s about showing up, being consistent and kind. Find what works for you and don’t worry about what others think.” – Suzanne
15. Don’t Get Wrapped Up in What You Can’t Do.
“Don’t get wrapped up in your disability and what you can’t do! Baby’s are only small for some time and the physical becomes less and less important as they grow! I found myself being wrapped up in who can lift them and physically assist them but my youngest now being three I’ve learnt that what is more important are the things that you can teach and the way you raise them rather than what you can physically do for them!” – Kelly Perks-Bevington
16. Don’t Shy Away from Asking for Help.
“As a mom of two with Crohn’s disease, my advice for new parents is not to shy away from asking for help and being open about your struggles. Even though parenting is a blessing, it’s hard work, especially when you live with a chronic illness. Be patient with yourself as you navigate this new role in your life and recognize that your disease will help shape the hearts and minds of your children in amazing ways. I have two toddlers and I already see such a level of empathy and compassion in them–which I credit to them living with a mom who has IBD.” – Natalie Ann Hayden
17. Focus on What Your Children are Gaining.
“Being a mom with a chronic illness comes with its own unique challenges and at times, you may feel guilty that your kids don’t have a healthy mom. During those times, focus on what your children are gaining by having you as a mom instead of what they might be losing. Kids with chronically ill moms are often more empathetic towards others’ struggles, are better at their own self-care, and are independent. Those are some pretty awesome life skills!” – Hannah
18. Give Yourself Grace.
“As a mom with disabilities, things look and are different but do it the best way you know you can. Don’t listen to others who don’t have to live the way you do because you will know what’s best for you and your baby. That maternal instinct is still there and you can and will always find a way. Also, give yourself grace.” – Amanda Bass
19. Breathe Through the Pain.
“I would say my best piece of advice for new moms is to enjoy every moment with your kid(s). There will always be more time to get the chores done, but you do not want to miss the little moment with your loves. Rest when you need it and enjoy the snuggles. Breathe through the pain because your love is waiting for their warrior mom. Just enjoy every moment to the best of your abilities!” – Andi Moritz Barber
20. Be Kind to Yourself.
“I think my best piece of advice for a new parent is to be kind to yourself. Set yourself free of expectations and pressure from outside sources that aren’t helpful right now. Do your best to take care of yourself as well as baby, and to enjoy every moment.” – Katie Thompson
21. Allow Your Body to Recover.
“Use this time to get to know your baby and to allow your body to recover from the birth. Your body has been through a lot and if the birthing process didn’t trigger a flare, overdoing it during the first few weeks could. Most importantly, remember that asking for help is normal, whether you have a chronic illness or not.” – Cynthia
22. Find Time for Doing Something You Love.
“I believe that parenting, whether sick or healthy, involves a balance between the love of one’s child and not forgetting the person behind the parent.
It’s difficult to lose moments in the haze of changing diapers, feedings, and lack of sleep. But I tried, even when I was in pain, to imagine that I was not me in the present moment, but that I was me 20 years from now, having the opportunity to live it again. This point of view helped me to let go of the “have-to’s” and allowed me to relish in the “get-to’s” – I kissed fuzzy heads and pressed chubby cheeks against my face. I tickled tummies and smelled stinky feet. I was in pain, but I was experiencing something I will never get back. I’m thankful for that perspective.
I think it’s just as equally important to remember that you don’t disappear when your child is born. It can feel that way. It can even feel like it should be that way, but if you lose yourself, as I did, your body will remind you until you make it right. Try to find just 20 minutes a day to spend time doing something you love (aside from your fuzzy headed chubby delight).” – Callie
23. Find Solutions for the Things You Can’t Do.
“I refuse to accept that there are certain things that I won’t be able to do with my son. For example, living in Southern California, my family often hangs out by the beach because my parents live right on the beach. My husband has taken the baby on the beach several times, and I wasn’t able to go along with them. It made me sad that I couldn’t be a part of an experience that had shaped a major part of my life. So I did some research and found out that the local lifeguard station has a beach chair to use free of charge on a first-come, first-served basis. There are also businesses which rent beach wheelchairs.” – Stephanie Arrache
24. Be Gracious with Yourself.
“I think the piece of advice I’d give to new parents, especially parents living with chronic illness and disability, would be to be gracious with yourself. Parenting is hard, and none of us know completely what we are doing. That is okay, and we learn as we go, growing alongside our children. The love you have for your children far outweighs the playdate you missed or the game you couldn’t play or the days you had to just hang out in bed together. Be gentle and forgiving of yourself and know that just by loving your children, you are giving them the one gift they most need.” – Angie Ebba
25. Take Care of Yourself First.
“Take care of yourself first. The healthier you stay, the better equipped you’ll be to take care of your little one. Asking for help so you can nap, exercise, or relax for a moment is essential for your mental and physical well-being, so don’t be shy!” – Sara Gorman
26. Talk to Yourself Like You Do Your Best Friend.
“My best advice as a new parent is talk to yourself like you do your best friend. Be supportive, gentle and don’t judge. Being a mom is hard and if you are doing your best, you should know that’s all you can do. You are enough! And you are doing a great job!” – Sarah
27. Sleep When the Baby is Sleeping.
“I can’t remember who said it, but before I even left the hospital with my first-born, someone told me to sleep when the baby is sleeping no matter what. I’ve seen so many new moms try to do it all and push themselves to the max. At the end of the day, though, getting that laundry folded or scrubbing the toilets is almost never worth it. So leave that laundry for another time and catch some Z’s anytime that baby is out — you’ll feel much more rested and able to care for your child as a result.” – Megan Glosson
28. Simplify Every Area of Your Life.
“Stress makes any chronic condition worse, and as a new mom, there are going to be stressful days! The best way to antidote this is to simplify every area of your life as much as possible (like decluttering your home, simple and healing home-cooked meals, and less busywork). After 3 of our own, we’ve learned that children do not require a bunch of toys, extracurricular activities, and extravagant meals, but rather, they prefer your love, creativity, and presence over everything else.” – Frank & Anna
29. Your Best is Good Enough.
“It will get hard and the voice in your head will start whispering that you are not good enough. But remember that you are the best mom for your child and no matter what the inner critic tries to tell you your best is good enough.” – Marina
30. Focus on the Positive Ways Your Children Have Been Impacted.
“The first thing that comes to mind is so many of us moms feel guilty for not being able to be that active mom we had envisioned being to our kids. My advice would be to focus on the positive ways your children have been impacted by your disability.
For example, I once had a mom tell me how beautiful it is to watch my older teenage boys be so tender with their mom. They are tender in the way they help get me in the car or put my ventilator on at night. They are tender in the way they think of their mom by getting her food before their own.
They are developing compassion, responsibility, caretaking, leadership, etc. in ways they may not have if their mom was not disabled. This is the beauty that comes from the hard. They also are not afraid of others they see with disabilities, they are quick to help others because they recognize those needs. My advice would be to not feel guilty because we are giving them so much more than we realize.” – Melody
31. Never be Ashamed of Telling the Truth to Your Children.
“Always be yourself, never be ashamed of telling the truth to your children, if they are too little to understand, simply try to enjoy every little moment you can when you are well, create memories, and live, because life is short and for those with a chronic condition, can be even shorter.” – Luciana
32. Learn to Go With the Flow.
“I think the thing that new parents need to remember is to give themselves a break. Nobody has it all together, everyone is just doing the best they can. Things may not go as planned and that’s ok. Learn to go with the flow and your life will be so much easier.” – Elaina Barber
33. Remember that Your Value as a Mother isn’t any Less.
“Your value as a mother isn’t any less because you have a disability. You are able to provide all of the love and emotional support a child needs. As your child grows and watches you live your best life despite challenges, they will grow to be more empathetic and resilient.” – Tara Merrell
34. Set Up a Support System.
“My single best advice would be to set up a support system and use that system to get you through the first and most physically demanding year of being a parent. Seek help from parents, in-laws, siblings, friends and other new mums to share experiences.” – Suzy C
35. Soak in the Precious Early Moments.
“Be extremely easy on yourself. It’s ok if you get nothing accomplished except caring for the baby. As I look back, 14 years since having a newborn, I have no idea what my house looked like or even what I looked like!🤣 Soak in and chronicle the precious early moments because you will definitely forget so much!” – @_lifewithcrohnsdisease_
36. Trust Your Instincts.
“My ultimate piece of advice would be to trust your instincts. You know what your body can do better than anyone else does. Don’t let ableist pessimism get in the way of you living your life and being the best parent you can be.” – Molly Carnan
37. Ask for Your Kid’s Forgiveness.
“Ask for your kid’s forgiveness when you screw up. I mean get down to their level, look them in the eye and say, “mommy screwed up, will you forgive me?”Forgiveness is crucial to our health and it’s not something the world teaches us. As a mom, it sucks to let our kids down or hurt them. As a parent with a chronic illness, I feel like I fail my kids a lot. Asking for their forgiveness models to them a powerful act that can change their life. Also, there is something healing when our kids, look up with eyes so full of love and say “mommy, I forgive you!” Cc’d – @thrivingwithnarcolepsy
38. Take Care of Yourself Without Feeling Guilty.
Give yourself grace and permission to take care of yourself physically and mentally without feeling guilty. Take care of yourself so you can take care of your little one! – Michelle Pickens
39. Give Yourself a Break to Recharge.
Be present as much as you can but give yourself a break to recharge as often as you can or need to. Forget about the messy house or other chores that can wait until later. Just spending time with the kids, doing anything really, is all they want from you. No frills needed! Just the best version of yourself you can be at any given moment. And sometimes that’s a version of yourself that takes a night off or sleeps at 8:30 pm. Having a supportive partner obviously helps (as I do) so I know these options aren’t available to everyone. – Maya
And last, but not least, here’s my advice!
40. Don’t Feel Pressured to Breastfeed.
“Throughout my pregnancy, I would wake up in the middle of the night with terrible anxiety, because I was so stressed about breastfeeding. I read books, articles and visited the local lactation specialist to make sure I was thoroughly prepared for when the day came. I had a lot of support, but I honestly wish that someone would have just said, “Hey, maybe this isn’t the best thing for you.”
I tried doing it for the first few days, but because of my physical disability, my husband had to try and latch my baby to my breast for every feeding. I don’t think it’s impossible. But, for me, it just made more sense to regain my sanity, sleep and strength, and use formula. If I could go back in time, I would’ve started out using formula from the beginning.” – Allie
Final Thoughts on Best Advice for New Parents: From 40 Moms with Chronic Illness and Disability
One of the biggest takeaways that you can learn from the advice for new parents above is that your child is not receiving any less of a childhood just because you’re chronically ill or disabled. Every mom has “mom guilt” – you’re no different.
I think the coolest thing about being a mom with a disability is the inclusivity that’s instilled in my child. Teaching compassion is implicit in his upbringing. It’s not that we won’t have to have tough talks in the future, but he has an example of what working through adversity looks like every day standing right in front of him.
One last thing, I want to sincerely thank all of the moms with disabilities and chronic illness who contributed to this article. They took time out of their busy schedules to think about the advice for new parents that could help others in similar situations. So, again, THANK YOU!
For more tips on parenting with chronic illness, check out 7 Tips that Make Life Easier for Parents Living with Chronic Illness.
To learn how we got our baby sleeping through the night by 8-weeks-old, read How To Create A Baby Awake Time Chart For Better Sleep.
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What’s your best advice for new parents? Tell me below in the comments?
Allie Schmidt is a rare disease advocate and disabled mom living with motor neuron disease. She founded Disability Dame in 2020 to provide tips to other moms living with disabilities and chronic illnesses.
In her spare time, you can find her traveling with her husband (she's been to 38 states and 16 countries!), watching reruns of Survivor, or tending to her near-constant sunburn from spending too much time outside. You can follow her adventures here.