Special Moms: A Unique Perspective On Shoes

Staff Writer
Baystateparent Magazine

Upon introspection, it occurred to me that being a parent of a child (or children) with special needs is a lot like wearing a unique, albeit sometimes uncomfortable, pair of shoes. Regardless of discomfort, we proudly don our shoes with such immense determination and pride that any minor discomfort subtly melts away. For those around us who have never or infrequently experience shoe pain, it can be difficult to explain or understand how we manage — very much like the old adage, “You never truly know someone until you’ve walked a mile in their shoes.”

A foundational truth is that few if any moms anticipate giving birth to a child with special needs. We all procreate believing that our children will be born pristinely perfect, perfumed by the gods, and as gorgeous as Gerber loves to portray. But that isn’t reality. It wasn’t necessarily mine.

When mothers head to the hospital to give birth, they are filled with adrenaline until the moment our newborn cries upon exiting our womb. But what if the baby doesn’t cry? What if the baby’s Apgar isn’t perfect? There’s no real way to plan or prepare, even with the best of intentions.

No one tells you that your child could be born with medical, physical or neurological challenges.

No one suggests to you that you should plan for potential crisis. And even if they did, there’s no optimal way to plan or prepare.

Therefore, when new parents learn of unexpected, unplanned for diagnoses, we are caught off-guard, emotional, fixated on solutions and wonder if life for us will ever be, dare I say, “normal.” Each of us is thrust into this new role and circumstance with unexpected force. Naturally, we are wobbly, uncertain, concerned, confused, likely even scared.

As I entered this new world, I didn’t know whom to turn to for advice, where to seek counsel, or even whom to trust. I feared our friends would struggle with what to say, our family would be rattled with uncertainty, and we too had to figure out a roadmap — with no support in sight.

Despite those mixed feelings, the underlying love and desire to care for our babies becomes our foundation, and from that, we build a new “normal” using scaffolding made from support, knowledge, milestones, and love. Those existing outside our microcosm will certainly wonder how we manage, and while I doubt most moms can tell you how they manage, the bottom line is that they just…do. And what I’ve learned in the 10 years since my initial foray is that we’re constantly managing while wearing a unique pair of shoes. They may not be the ones you’d ever want to buy or wear, yet moms like me greatly appreciate when you admire them from afar or even comment on them. We’re often very happy to chat about them, and truth be told, talking about our shoes — one of the most thoughtful and kind gestures — makes us feel more kindred.

Not Different, But Unique

  Most of the time, I feel no different than any other mom who is in absolute love with her children and wishes all good things for them. All the moms I know work incredibly hard to protect and keep their children safe, while teaching them valuable life skills so that one day their little ones can live independently. As moms, each of us juggles an insurmountable number of daily tasks. We care for our families, our children, our friends, and for many of us, our careers as well. In addition, we’re expected to stay completely on top of social calendars, sporting events, practices, carpool obligations, volunteer work, social graces, our spousal relationships and, of course, our “stuff.” You know — the things that keep us awake at night or cause us a level of anxiety.

Motherhood initiates us all into a bonded sisterhood of women who, through knowing glances and nods, communicate well-known messages such as, “Don’t worry, girl, tomorrow will be a better day,” or “Hang in there, it’s almost bedtime!” This sisterhood is so much more relevant and important to moms of children with special needs because we’re not only expected to manage all of the above, but we must also mitigate all responsibilities associated with caring for our children — much of which leads to sleepless nights, fatigue, numerous physician visits, therapy appointments and IEP meetings.

When we take our children to the playground, for example, it’s difficult to engage in playground parent chatter like our peers do because our focus is typically glued to the location of our children, what they are doing, who they are engaging with, and also if they are engaging in a proper manner. When we send our children off to school, we anticipate calls from the school reporting unexpected or unplanned situations that will shift the focus and schedule of our entire day. Doctors become friends given how regularly we see them, and planning a vacation is often more about safe accommodations rather than an adventure-filled agenda. Not better, not worse…simply unique.

So when a fellow mom of three and friend of 10 years recently wrote a piece relating to support for moms, I found an incredibly eloquent nugget worth sharing: “At our core and out of necessity, we’re a group of encouragers. We’re building a recharging station to sustain each of us individually and all of us collectively, as we travel a long road with unique challenges.” And, as my friend Sharon said so beautifully, while our road and shoes may be unique, we are still fortunate to be members of this wonderful sisterhood called motherhood.

Perspective Cures All Ills

  Prior to becoming a parent, my experience with individuals with disabilities was rather minimal — that is until I began volunteering at Children’s Hospital in Boston. Within this new world, I began to see just how many innocent children are affected by medical diagnoses from Rett Syndrome and Fragile X to lethal lymphoma and fibromyalgia. The nearly five years, which I will forever laud as my “formative years,” put my tiny life in perspective as I watched thousands of families walk through the hospital doors with the same desperate, inquisitive look on their faces — literally begging for someone to heal their child.

Through volunteering, however, I gained amazing perspective. Strolling into the hospital each week, I never knew what would come my way. Would I be cradling a desperately sick infant, manning the information desk, or wheeling children and their families from one floor to another? It was hard to predict. But within every interaction, I gained valuable tidbits that have been integral to my experience as a mother of children with special needs, the most important of which is that no one can plan for the unexpected.

I had seen countless families enter and exit Children’s Hospital over the years — some with their children, and sadly, some without. Therefore, what grounded me straight away as the stone-faced geneticist entered our hospital room to advise us that I gave birth to a child that he claimed was “incompatible with life” was…perspective. As he babbled on with apology (as if somehow he caused our daughter’s diagnosis) his words quickly faded into the background because all that mattered was that I had a daughter and she was coming home with me! At that moment, she became my renewed purpose in life.

Unique perhaps, but not alien

  Along with a unique pair of shoes, moms of children with special needs also acquire another level of education, which includes a new language complete with acronyms (IEP, ABA) as well as enough medical and therapeutic knowledge to earn several diplomas. We frequently know the best places to eat within walking distance of most hospitals, have the inside scoop on enclosed, handicap-friendly playgrounds, family-friendly locations with wheelchair access and elevators, and can tell you which mattresses ensure an optimal night’s rest. We’ve amassed a significant volume of information within our mind hive and are expert jugglers. When glued to our mobile phones, the person on the other end of the line likely works for an insurance company. IEP meetings are nothing short of an annual board meeting — complete with resentful and unhappy stakeholders. But because we look like all other moms, it can be challenging to scope us out as we grab a grande mocha beside you at Starbucks, exercise on a neighboring treadmill, or stand in line with you at the grocery checkout. In these fleeting moments of relative normalcy — when we aren’t physically connected to the children who wantonly depend on us — we recharge, ponder, absorb quiet, and simply, breathe. For a short while, we’re just moms, not aliens.

So as you set out to honor your mothers, grandmothers, aunts, sisters and daughters, consider sharing a few moments with a fellow mom whom you know but may have kept your distance from or one whom you don’t know too well. She may be another mom in your children’s school, your church, your fitness class, or even a neighbor. Just wishing her a “Happy Mother’s Day” is an incredibly thoughtful gesture that has significant, long-lasting mileage. With all the unexpected, unplanned craziness of our lives, sometimes the simplest, most genuinely thoughtful gesture means the world.

Mother’s Day Gifts for Special Needs Moms next page

Mother’s Day Gifts for Special Needs Moms

1. 3-ring binders/3-hole punch/sturdy boxes. Most moms keep a handful of special art projects, class reports, science projects and creative drawings made by their children, but moms of children with special needs basically save everything their children do because we are required to document our child’s academic progress. It is our responsibility to keep track of various medical reports, progress updates, report cards, work samples, evaluations and more, so 3-ring binders are a necessity. Binders alone are just the beginning; an even more valuable gift is organization. If you are an organizational expert, your services should be strategically marketed to all parents of children with special needs who, without a doubt, would become a significant percentage of your client base.

2. Manicure/Pedicure. What seemingly can be done in an hour or two is something moms of children with special needs rarely treat themselves to due to time and expense. Frivolous monetary outlays don’t often figure into our annual budget. While we’d love to pamper the heck out of ourselves, it often doesn’t seem or feel practical. Yet, when it comes as a gift, we’ll grab the opportunity with both hands and enjoy every minute!

3. Wine. A simple glass of wine can often take the edge off any challenging day. An ancillary benefit is that wine can be imbibed at a time convenient for us (usually once our children are snuggled in bed), and also provides useful calories to those of us who find that eating is the last thing we find time to do.

4. Playdate. Not everyone is up for this, but arranging a visit (to your home, at a playground or similar) is such a treat — not only for our children, but for us moms, too. Another parent (aka, an extra set of eyes and hands) can make a huge difference in our day. While our kids love to get out of their own four walls, play with other children, and see the world, we too enjoy brief escapes during which we’re not the exclusive caretaker — even if for just one hour. Of course, it may be awkward. You or your children may not know exactly how to act or what to say. But, you will never gain that experience unless you try. Taking the time to do so will mean so much…guaranteed.

5. Don’t avoid us. The life of a special needs parent can be a lonely one, especially when people either pretend nothing is wrong or prefer not to engage. Too often, people avoid talking to moms about their children with special needs as if avoiding the subject will somehow prevent awkward situations. When we don’t know what to say or how to act, it can be truly vexing. The truth is that avoidance often amplifies the awkwardness. Most moms are very willing and open to discussing things with friends or even strangers.

So even in those uncomfortable moments, perhaps instead try, “How are you today?” or “I’m not sure how to ask you about this but…” When people have done this with me, I’m almost brought to tears with happiness since I know right away that someone is genuinely interested in learning more and cares enough to ask rather than avoid.