There is simply no preparing for the moment you’re told your child has a disability. There’s no universal guidebook on how to process quite possibly the most devastating news you’ll ever hear, and more often than not, there’s absolutely zero warning this life-altering moment is coming.
In the case of my daughter, Callie, I gave birth to her, moments later I was completely numb listening to the doctor tell us she had a chronic heart condition that required open heart surgery immediately AND she had a lower limb deficiency. It happened that fast.
In a heart beat.
Prior to receiving Callie’s diagnosis, I knew absolutely nothing about Tetralogy of Fallot or what life would look like for her as an amputee, but now waves of information were coming at me at lightning speed, and my brain was in overdrive just trying to keep up. In those first few terrifying hours and days, I didn’t know much, but I did know that this new world felt incredibly lonely.
But not for long.
As soon as the news of Callie’s diagnosis made it out of the hospital room, my husband and I were flooded with messages of support from friends and loved ones who wanted nothing more than to help. Early on, when anyone asked what they could do to help, my numb response was “I don’t know.” It was the truth. I was struggling just to breathe, and the thought of ideating and delegating tasks was so far beyond my mental capacity.
Early on, when anyone asked what they could do to help, my numb response was “I don’t know.” It was the truth.
Fast forward nearly 15 years, and I’m beyond grateful to share my now teenage (slow down time!!!) daughter is sassy, vivacious, kind-hearted, and thriving. It’s been a life-defining journey, to say the least, and when I look back on those first few months, I felt called to leverage our learnings to help guide others on how they can best support a mama whose child has received a disability diagnosis.
Of course, every situation is unique, so there’s no one-size-fits-all answer. However, I want to share five things you can do to support a mom who’s child was just diagnosed with a disability (plus three things not to do) in hopes that it might spark the idea that’s right for you.
Do Take Things Off Their Plate
Allow me to let you in on a not-so-shocking secret: having a child with a disability is hard. And as it turns out, caring for a child with a life-altering medical diagnosis isn’t something you’re asked to take on instead of your normal day-to-day responsibilities; it’s in addition to them. For me, one of the most challenging aspects, in the beginning, was trying to find any semblance of balance. I wanted so badly to focus every ounce of my energy on getting Callie well, but I still had to worry work obligations, a marriage to keep strong, and my own physical and emotional health—something I didn’t absolutely pushed to the back burner.
Suffice to say, if you’re looking for a tangible way to support a disability mom, start by asking yourself if there’s anything you can cross off either their current or future to-do list. If you’re coworkers, consider whether there are any active projects you can take off their plate. If your children are friends, offer to drive their healthy children to school or activities to eliminate any added juggling on their end. If you live close by, offer to take the dog for it’s daily walks or even keep it at your own home for a time so their household has one less moving piece. If you’re neighbors, offer to pick up their groceries or have dinner delivered one night. If you’re a close friend or family member, consider starting a GoFundMe to get ahead of any potential financial challenges, or simply offer to pass on medical updates to others so they don’t lose precious time replying to each incoming message individually (We utilized Caring Bridge for this and it was a God-send).
At the end of the day, you can’t take away the heartbreak of a disability diagnosis, but you can give a mother the gift of time so they can focus more of their energy on caring for their child, their family, and themselves.
Do Be Patient
Living life when your child is diagnosed with a disability feels a lot like riding a roller coaster blindfolded; you absolutely know there’s going to be ups and downs, but since you have no idea when they’re coming, you have to just hold on tight and hope nobody throws up.
Spoiler alert–everyone throws up.
On a day-to-day basis, especially during the more intense phases, I found it nearly impossible to predict when Callie might develop nausea from her meds, start crying because of pain, or spike a fever and need to be rushed to the ER. There’s no such thing as a consistent sleep schedule for a child with a newly amputated limb, and especially during physical therapy weeks, mealtimes are all over the place too.
Living life when your child has a disability feels a lot like riding a roller coaster blindfolded; you absolutely know there’s going to be ups and downs, but since you have no idea when they’re coming, you have to just hold on tight and hope nobody throws up.
At the end of most days, I was physically and emotionally exhausted, and most evenings, I would fall asleep rocking Callie to sleep. Like most moms, I “thought” the time after putting my kids to bed would be an opportunity to play catch up on the day, but during those early months, “me time” was pretty non-existent, and I often found myself feeling guilty for falling behind on everything.
If you’re reaching out to show your support to a disability mom, patience is key. At a minimum, let go of any expectations you may have for their replies (or their attendance at your events), or even better, give them permission not to reply at all. My absolute favorite messages to receive—especially early on in our journey—were the ones that literally said “No need to reply, but I saw this and thought it would make you smile. Just wanted to let you know I was thinking about you!” Knowing I was loved and supported without feeling the pressure to respond was truly such a simple gift.
Do Check on Their Other Kids
When a child is diagnosed with a disability, the entire family is affected. I don’t have much experience with this one but I’ll share what other mamas I know have experienced. Most kids have never heard the word “disability” before their sibling’s diagnosis, and now are forced to comprehend what’s happening, adjust to a completely altered schedule and lifestyle, accept that the bulk of attention would be on their sibling for a time, and also face some really grown-up fears about the future. Being a disability sibling is hard work.
If you want to let a disability mom know that your heart is with her family, consider what you might be able to do to brighten the day of their healthy children. It’s likely they are struggling to keep their lives feeling as normal as possible in the midst of chaos, so inviting them over for a playdate or shuffling them back and forth to their favorite activities can go a long way. Additionally, if you’re dropping off a gift for one child, consider adding in smaller gifts for siblings. Showing a mom that you care about the physical health of their sick child is incredible, but showing you care about the mental health of their healthy kids as well is an unforgettable gesture.
During the first few months of Callie’s life, it probably appeared to others that the cardiac + amputee world had fully consumed my life (and at times, it 100% had). However, underneath my bloodshot, sleep-deprived eyes and behind my newly-expanded medical vocabulary, I remained the same person I was pre-diagnosis—albeit with a fresh perspective on life.
I imagine that during this time, friends might have assumed that Callie’s health would or should be the default talking point anytime we connected. In reality, however, my sanity was highly dependent on having “normal” conversations with people outside the four walls of the hospital. After all, my sarcastic sense of humor hadn’t changed, but my need for a good laugh had multiplied exponentially.
If you want to keep a disability mom smiling, please don’t stop sending them all the hilarious memes that you laughed at together pre-diagnosis. Also, keep in mind that caring for a sick child doesn’t mean they stopped caring about you or others, so feel free to continue sharing your own personal updates (as long as you remain patient with replies, and don’t complain about how hard life is because your child has the flu). I assure you they still want to hear the latest group gossip, celebrate your big promotion, and laugh about your latest disaster date. Having normal conversations can not only provide a much-needed mental break, but it’s also a great way to remind a disability mom that they still have an identity outside of this experience, and the amazing, multi-faceted person they are will not be lost or forgotten in the shuffle.
Do Offer to Be a Resource If You Have True Relevant Experience
It’s a complete game-changer when processing a lower limb deficiency diagnosis to connect with someone who has “walked” the path before you. There is just something so refreshing about having a friend who understands both the nuances of treatment and the flood of emotions that comes with the journey. Someone who can remind you what that medical acronym stands for, reassure you that your child’s gait looks good, and advise you on what to keep packed in your go-bag in case of an emergency hospital stay. Someone who can be honest about what to expect—including the messy parts—so you’ll actually believe them when they say that better days are coming too. Someone who will celebrate every small win alongside you, and also tell you that it’s OK to cry quietly in your hall closet.
If you’re in a position to be this resource for a newly-diagnosed disability mom, I’d argue that you have the opportunity to provide them with the greatest gift of all. Just keep in mind that everyone processes information differently and deserves to do so in their own time. The most supportive thing you can say is, “I understand that your experience won’t be identical to mine, but I’ve walked this path before, and I’m here if and when you need me in whatever capacity would be most helpful.” What an absolute blessing to allow your story to become someone else’s survival guide.
I hope by sharing our experiences in this blog, we are that survival guide for you.
What Not to Do
There is perhaps no conversation I’m less interested in having than the one that attempts to place blame on how my child got her lower limb difference or her chronic heart condition. Of course, I would be thrilled if there were a scientifically-proven origin discovered that could lead to either greater prevention or more advanced treatment options. But today, there is no known answer for how Callie got Tetralogy of Fallot or how her lower leg didn’t develop fully, and that also means there’s nothing to be gained by guessing or finger pointing.
When a mom is already in a highly-emotionally state, asking whether their child’s disability is genetic can sound an awful lot like “Did the worst thing imaginable happen to your child because you gave him/her bad genes?” Similarly, asking whether their child’s chronic illness might have stemmed from environmental factors can feel equally hurtful, as it implies that the catalyst for diagnosis was something within the mother’s control.
Personally, I would recommend fully avoiding this conversation. Not only can the topic be emotionally triggering and hurtful, but it rarely seems to have the interest of the child in mind. More often, it feels like the person asking is looking for some sort of reassurance from a disability mom that what happened to their child can’t or won’t happen to their own. Rather than asking a question that could be hurtful, it’s far more supportive to focus on how you can be supportive moving forward.
Don’t Give Them Unsolicited Advice Regarding Treatment
I really can’t stress this one enough. I’m aware that we live in a Google-Search age with unlimited access to information. And maybe you’re really into natural remedies, or CBD worked wonders for your sister’s daughter, or you read something online that seemed really promising. However, every single child and every single diagnosis is completely unique, and that’s why there are teams of doctors, therapists, occupational therapists, physical therapists, and orothotic specialists working to develop and implement the best possible treatment for my daughter.
Don’t Assume Their Disability Journey Has an End Date
As a parent whose child received her first prosthetic when she was 18 months old, this one hits particularly close to home. I had that date on our calendar for years as Callie’s “Leg Day” and I very publicly counted it down. But that was one of many “Leg Days” and we know now it was a milestone and not a finish line.
For many parents (and especially moms), things like “Leg Day” is when PTSD sets in. It’s when the adrenaline wears off, and the reality sinks in. It’s when you begin praying that open heart surgery works and you won’t have to have another one for a few years. It’s where you pray that the new leg fits, is comfortable, and easy for her to navigate the world in. It’s when your focus shifts from obtaining life-saving treatment for your child to assessing the potentially soul crushing long term implications of the disability.
I know you may miss the person your friend or family member was before their child’s diagnosis (I miss that girl too). But you can’t expect that they will ever “move on” from their experience, and on some level, your support will always be needed. Anyone who has been through this journey will tell you that it’s forever changed them, and while you can’t pull a disability mama back into the person they were before diagnosis, you can certainly hold their hand and help them to love the person they’ve become.
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