5 Unexpected Gifts of Medically Complex Parenting and Caregiving
“Today, I am choosing to look at the growth I’ve experienced. Adversity in any facet of life can bring benefits, and I believe those of us who raise kids with medical complexities are handed our fair share of adversity. As a result, we also reap the benefits of learning to handle everyday challenges through a new lens.”
Selfie of Stacey, the author, and her daughter, Skyler. They are both looking at the camera and smiling. Stacey’s blonde hair is pulled back. Skyler’s blonde hair is down. Stacey wears a white flannel shirt; Skyler wears a green shirt, purple hearing aids, and holds onto her mother’s chin.
I’m not sure that “unexpected” is the best word to describe what I’m about to discuss because it implies that we would not expect to find joy in medically complex parenting. Maybe a better word is unintended? And is “gift” the right word? Benefits? Surprises? Silver linings? No matter the phrase, if you are reading this, you probably know how tough it can be to raise a child with medical complexities and the resulting disabilities. Or maybe your child has been newly diagnosed, and you’re looking for hope. While I don’t want to minimize how tough it can be, there is something to be said for the transformation that takes place in us as parents and caregivers. (And please note that I am talking strictly about the parent/caregiver experience and not about the experience of the individual with disabilities – it's not my place to comment on that.)
As a parent, though, I now have 10 years of experience under my belt. I could go on and on about my darkest, most frustrating days as a parent and caregiver, and sometimes I will do just that. Today is not that day, though. Today, I am choosing to look at the growth I’ve experienced. Adversity in any facet of life can bring benefits, and I believe those of us who raise kids with medical complexities are handed our fair share of adversity. As a result, we also reap the benefits of learning to handle everyday challenges through a new lens.
You become creative, efficient, organized
You will learn how to take care of your child, even when you think you can’t. At first, every new task (e.g. switching formulas and feeding plans, integrating a new med into your child’s regimen, juggling appointments, attending IEP meetings) seems daunting. In time, however, you adapt and evolve to meet each new challenge, and each time – to your surprise - you adapt more quickly. This is also where your creativity sneaks in. You figure out ways to do things ahead of time. You prep a few days of formula at a time or you draw up meds in batches. Maybe you’re like me and you rig your daughter’s stander to be safer for her so that she can be entertained in the kitchen with you while you do prep and make a few calls. In time, you may notice that you also become creative in other areas of your life (like writing a children’s book for instance 😉). That creativity increases your resilience, our next subject, because you’ll have an outlet to rely on the next time you need to blow off steam.
You become resilient
Whenever you think life is calm and you’re going to have a normal run of the mill week, you won’t. Nope. Ha! The joke’s on you. You’ll have an unexpected appointment because a specialist had a cancellation, or your child woke up with a fever, or your trusted caregiver can’t make it. While some of these are normal parenting experiences a la “expect the unexepected,” it’s tough when sometimes you are the only medically qualified caregiver for your child. And remember those dark, frustrating days I mentioned? I know I said I wasn’t going to go there but hear me out. Those dark, scary, sad, seemingly hopeless days where you reach the brink, think you’ll never come back, and then you do – those days make the simple appointment cancellation or caregiver sick call feel like no big deal. You become adept at either taking it in stride or finding solutions. People in your life will also step up. More on that to follow.
You become an advocate
People may think they have answers for something your child has been struggling with for their entire life. People may not understand what you know about your child. People may not want to help you take care of your child in the way that you know your child needs or deserves to be cared for. Institutions and systems may not be set up for you or your child’s best health or success. This will activate your inner mama-bear (or papa-bear). Your eyes will be open to injustice everywhere, where you may have previously seen very little. You will feel compelled to speak up for your child and others (a win for all humankind!) because you may finally understand that if you don’t speak up, things will not change for the better. Another benefit of advocacy – pride! You will find a sense of pride in standing up for your child, yourself, and others.
You become open
Whether you become an amazing advocate or not, you will need help in ways you never expected. I have always been fiercely independent and so this has been one of the toughest “gifts” for me to come to grips with. Our lives have been invaded - so to speak - by medical professionals, therapists (early intervention, PT, OT, Speech, behaviorists, etc.), teachers (teacher for the deaf, teacher for the visually impaired, special ed teachers), medical advocates, educational advocates, and so on. There was a time when I despised the “invasion,” but I quickly learned that – in the best interests of my daughter (and my sanity) – I needed to get onboard. Now, all of these helping professionals have become colleagues, partners, and - sometimes even - friends, in our journey. Where I once was closed off, I’ve become open to new relationships.
Parents, friends, and community members have also stepped up to help us. Where I previously said “no, I’ve got this,” I am now willing to accept the help a little less reluctantly. From that support, we feel closer to family members and friends who have been there for us, which brings me to the next gift.
You become grateful
Gratitude may be the most important gift I’ve received from my parenting experience. My journey with gratitude has largely stemmed from the appreciation of just how fragile life can be, and I learned so much about that fragility in my daughter’s first few months. Every day with Skyler felt like a gift because, as we sat in the NICU and CICU, we watched countless others experience heartbreak. We knew – without a doubt – that tomorrow wasn’t guaranteed, and that feeling has never left me. When you see firsthand that each day with your child is a gift, your heart is filled with gratitude, and I am SO very grateful for Sky. There are so many beautifulmoments (e.g. a milestone met) and beautiful people (e.g. a caring child in Skyler’s class) in this life that I know – had my child been born healthy - I would have taken for granted. Another side note – finding gratitude in each day can also increase our resilience!
If you’re new to this medically complex life, I hope this provides some inspiration to you as a parent and caregiver. Though I know it may not always feel like it, there is love and light and joy in this life. If you’ve been in the caregiving game for a long time but need some encouragement, I hope you’ve found it here.