Saying something is more important than what is said

I see the posts every time I scroll through Facebook or Pinterest, with bright, clearly labeled graphics that jump out as people share them across social media.

“10 things not to say to parents of preemies.”

“5 things you should never say to someone who is grieving.”

“8 phrases no special needs mom wants to hear.”

If there’s a group or a role or a label, there is an article for you: moms, dads, grandparents, those dealing with death, special needs parents, teenagers, toddlers, NICU parents, mothers who have miscarried, people with depression, veterans… and the list goes on and on. What not to say, don’t say this, don’t say that.

But eventually, all we hear is DON’T SAY.

Where we may hope to ward off insensitive comments with our lists of what not to say, what we are doing instead is causing people not to say anything at all. For fear of offending or causing hurt or saying the “wrong” thing, we are creating a world where people are scared of reaching out, of trying to connect, of showing others that they do, in fact, truly care.

I’ve read these lists, and most of what are on them have been said to me. I’ve been told many times over that God gives special children to special parents, that God doesn’t give us more than what we can handle, that I’m inspiring as a special needs mother, that everything happens for a reason.

But here’s what I’ve learned – because of, within and despite all of these words and phrases: the very essence of saying something, of being there and being present for someone else, is more important than what is said.

Yes, there are deliberately cruel and very insensitive comments, but these are an exception and shouldn’t be given any value.

Most often, it is not what is said that matters, but how it is said and why it is said. The truth is that in times of such immense and overwhelming grief or struggle, most words do sound hollow. Usually, there are no words that can convey the depths of despair caused by many uncertain situations like a critically premature birth or an unexpected diagnosis or the death of a loved one.

It’s when we listen beyond the words that we can hear the real sounds emerging: love and compassion.

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When Brenna was born, and in the months and even years following, so many people reached out from all periods of our lives – from old music instructors to high school coaches and teachers to college friends we hadn’t spoken with since graduation. I remember very few of the actual words said, but I remember every single person who was there for us, who made it a point to take time from their lives to reach out and express care and love for our family. I also remember those people who didn’t say anything. I’m sure they felt awkward or uncomfortable or didn’t know how to convey what they wanted to – but what it felt like on the other end is that they didn’t care.

Making the time to say something to those in your life who are hurting, who need encouragement or who deserve a congratulations is one of the simplest and most meaningful ways of caring for those around us.

It is easy to avoid situations or experiences when we feel uncomfortable or aren’t sure of the right words. However, the timing may never be right and the words may never feel right – but expressing love and care is always the right decision over saying nothing at all.

Sometimes, instead of taking offense to every phrase that feels not enough when we are hurting, we need to stop listening to the actual words so that we can hear the love when someone makes the time and effort to be there for us in the best way they know how.

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How we’ve modified our home for our daughter’s skin disorder

When we moved into our new home in the fall of 2014, we not only stepped in ready to settle into a new community and school district, but also motivated to transform our house. We had lots of updates we wanted to make, and keeping Brenna’s physical needs in mind during the remodeling process was top priority.

Brenna is very small for her age and struggles with fine and gross motor skills, and her constant use of Aquaphor is something we keep in the back of our mind when choosing fabrics, so over the last 1.5 years, we have modified aspects of our home to make it more easily maintained and cleaned and to help tasks be easier for Brenna to do independently.

One of the first things we did when we moved in was switch out the door knobs for door handles. Knobs are still very difficult for Brenna’s small fingers, and turning a knob with Aquaphor on your hands is nearly impossible. Handles mean that she can open and close all of the doors in our house without help.

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I love how cozy carpet makes a space feel, but we also know that carpet collects skin flakes as her extra skin dries and peels off and is more difficult to clean. So we installed laminate wood in Brenna’s bedroom and our upstairs hallway.

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What was a major selling point for us as we purchased our home was that it had an extra bedroom which we could remodel into an upstairs laundry room and built in a new bathroom for Brenna. Two essential features of Brenna’s bathroom remodel were a tiny toilet and a specialized MicroSilk tub.cIMG_7316

The toilet being so low to the ground means that Brenna has been able to learn how to use it all by herself, whereas she is not even close to being physically strong or tall enough to climb up on a standard sized toilet…cIMG_7324

Speaking of low, we’ve tried to be intentional about keeping a lot of aspects of our home low to accommodate Brenna’s small size and also foster independence. We keep her small articles of clothing like socks and hats and washcloths in lower drawers and baskets, and she helps me put away her laundry easily.

The kids’ plates, bowls and cups are stored in low cupboards with pull-out drawers that both kids can easily access to help prepare their meals and to help put away clean dishes. One of Brenna’s household “jobs” is to set the kitchen table with napkins before dinnertime, so keeping the napkins in a lower cupboard means that she can complete this without assistance.

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And when Evan went to work creating a mudroom space for our home, we put a section of low hooks so that the kids can hang up their coats and backpacks, and a basket where they can toss their shoes. So many mudroom ideas online feature hooks above a bench, but I knew that would be out of reach for Brenna for a long time – not to mention that the harder something is to do, the less likely the kids will be to actually do it. A hook and a basket is so easy for them and keeps things tidier.

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As for furniture, we outfitted our playroom and our living room with leather. Brenna can climb and roll around on this furniture, and it’s no worse for wear. Easy to clean and easy to maintain, despite constant Aquaphor! And during the summer, after a few throw pillows that have succumbed to the stains of Aquaphor, I snagged some outdoor throw pillows for our living room… the fabric is more low-maintenance!

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Our home is two stories, plus a basement, and we did worry about how difficult stairs might be, but Brenna does really well on them. We do carry her a lot, but she is able to scoot up and down by herself with no problem.

Since laundry is such a big part of our day-to-day now, we outfitted our laundry room with two washers, so we can have one specifically designated for Brenna’s clothes. Laundry is a little more consuming when you factor in clothing saturated with Aquaphor – cleaning both the clothes and the machines/sink – so having a big sink to pre-soak and a separate machine really helps.

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As for the outdoors, the big issue we had when we moved in was a large, old wooden swing set. The wood worried me for cuts and splinters for both kids, but especially Brenna since her skin is much more sensitive. And with its steep step ladder, the slide and “tree house” wasn’t even accessible to Brenna without me carrying her up.

So we switched out the swing set for the Step2 Naturally Playful Adventure Lodge Play Center with Glider. Here’s another reason we love Step2 – their swing sets are plastic! And the “ladder” on the back of it is more like stairs, with handles to grab onto at the top, so Brenna can climb up all by herself.cIMG_3705

 

With these kinds of changes, both big and small, it has empowered Brenna to take responsibility within our household just like every other member of the family. She is expected to do chores just as Connor is, and because of things like low mudroom hooks and door handles instead of knobs, she can do many things around our home without assistance, which only serves to foster more independence and pride at what she is accomplishing!

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