Updated: Feb 28
Guest post by Amber Bobnar
When your baby is born with a serious medical condition, it can feel like you are thrown into a new and frightening world. Everything is different now. You have to learn new terms, cope with doctors' appointments and treatments, and somehow find time to take care of yourself.
One tool that can help you manage this difficult situation is mindfulness. Mindfulness can help you stay present in the moment, even when things are tough.
Parenting a medically complex baby can be both emotionally and physically taxing as you try to attend hospital visits while sorting through new family dynamics and still keeping up with household tasks. Practicing mindfulness can help you manage these stresses and stay calm in the face of adversity.
What Is Mindfulness?
Mindfulness is the ability to be present in the moment, to be aware of what is happening around you without judgment. When you are mindful, you are able to observe your thoughts and feelings without becoming caught up in them. This can be a difficult skill to learn, but it is one that can be extremely beneficial, especially for parents and caregivers of special needs children.
Parents are often so focused on caring for their children that they can forget to take care of themselves. As a result, they can become easily overwhelmed, leading to feelings of anxiety and stress.
Mindfulness allows you to be more patient and understanding with your child and their disability and more attuned to their needs. It can also help you to manage your own stress and anxiety.
Why Would Mindfulness Benefit Parents of Special Needs Babies?
Parents of special needs children often have little time or energy left for their own self-care. Mindfulness practices and meditation can help you find calm amidst the challenges of your everyday life. For parents of medically complex children, mindfulness meditation can be essential for maintaining mental and emotional health.
Mindfulness can help you manage your stress and find moments of peace. In fact, a study in the Journal of Child and Adolescent Psychiatric Nursing found that when special needs parents practiced mindfulness, they experienced "reduced stress, anxiety, and depression" and "improved psychological well-being."
By taking time to focus on the present moment and being mindful of your thoughts and feelings, you can learn to better cope with the challenges you face. In addition, mindfulness can help you to appreciate the small moments of joy that come with parenting a special needs baby. As any parent knows, these moments make all the challenges worth it. Ultimately, mindfulness can help you appreciate the joys of parenting.
5 Ways to Cultivate Mindfulness Every Day
1. Begin Your Day With Purpose
Mornings are a difficult time for many parents raising medically complex babies because it can be hard to know when the night ends and the new day begins! You may be up all night managing your baby’s healthcare needs or even sleeping fitfully in an uncomfortable hospital chair near your baby’s crib while inpatient.
No matter how hectic your day begins, it can be grounding to start with a simple breathing exercise and positive mantra. Inhale deeply, hold your breath, then exhale everything out. Take a minute to empty your mind of the stress and all the thoughts of the things you need to do today.
You can develop your own mantra, something to tell yourself that will start your day with a positive thought. For me, I remind myself that I am doing my best with what has been given to me. I can’t control everything that comes my way, but I can control how I respond to my situation, and I focus on doing the best I can. This doesn’t mean I can do everything - far from it - but I can recognize my own limitations and feel comfortable in what I am able to accomplish.
2. Reduce Brain Clutter
It’s easy to set yourself to "autopilot" mode and just run until you are exhausted. Our society admires multitasking, however recent research has shown that multitasking can lead to depression and anxiety.
If you're feeling overwhelmed by all the things on your to-do list, take a deep breath and focus on one thing at a time. As the parent of a special needs child, you admittedly have more on your plate than most, but you can still take a step back and reassess your priorities. Make sure you're taking care of yourself, both physically and emotionally. And don't be afraid to ask for help when you need it or to find ways to automate your daily tasks, like managing your child’s medications.
The best part of reducing your brain clutter is that you will be more available to appreciate the little moments with your baby, and isn’t that what’s most important, anyway?
3. Find Peaceful Moments Throughout Your Day
Be calm, live in the moment, breathe, and focus on what is in front of you rather than what is to come. This advice is always easier to say than to put into practice. A simple place to start when introducing yourself to mindfulness may be to just find small moments of peace throughout your day.
This may be as simple as focusing on your breathing while driving to a doctor’s appointment or sitting for a minute to clear your thoughts before going to get your baby up from a nap. Take a moment to recalibrate your thoughts. It’s really not something that needs to take up much time, but can make a huge difference in your outlook!
4. Be Kind to Yourself
Being a special needs parent can be a deeply rewarding, but also enormously challenging, experience. It takes remarkable commitment, patience, and strength to care for a child with unique medical needs. Unfortunately, it’s very easy to fall victim to the feeling that you are just not doing enough.
Guilt is the constant companion of the special needs parent, but you need to remember that it's okay to make mistakes and it's okay to not know all the answers. Allow yourself to recognize that feeling of guilt, then let it go and forgive yourself.
Remember my mantra? I am doing my best with what has been given to me. Not only does this mantra remind me that I can never do more than I am capable of (there is no way to give 110%), but it also reminds me that I need to accept my circumstances and my responses to them. Acceptance can go a long way to allowing you to release some of your guilt.
5. Be Selfish
Mindfulness may seem selfish. So much focus on me and my emotions! As parents, we often feel like our own needs are trivial when compared to our children’s.
That’s a completely natural parenting instinct, but you need to remember that taking care of yourself will make you a better parent.
Being able to take care of others starts with being able to take care of yourself.
Taking care of ourselves helps create physical and emotional space that allows us to think more clearly - something that is vital when managing a medical crisis or complex healthcare needs. Taking time for yourself also allows you to connect with who you were before becoming a parent, adding balance to what may otherwise be a disorderly life. Self-care is not selfish; it's necessary — both for parents and their families alike.
Amber Bobnar is editor and owner of WonderBaby.org, a site dedicated to helping parents and caregivers of young children with visual impairments as well as children with multiple disabilities. She is mother to Ivan, a fun-loving seventeen-year-old boy who is diagnosed with Leber’s Congenital Amaurosis, Joubert Syndrome, refractory epilepsy, and oropharyngeal dysphagia with chronic upper airway congestion.