HOME TOUR

I had the unique opportunity to listen to Cade explain his legs the other day. And all I was doing was hurriedly putting away laundry in Kai’s room before the cleaning ladies came. They were being rambunctious, my littles. Jumping off the edge of Cade’s toddler bed in squeals of delight. Thunking down hard from the side rail making all kinds of racket. And in this old house, believe me, that stomping can pretty much be heard from the local grocery store. And sweet Celia came in and up the stairs to find those little monkeys scurrying all around.

Celia has a heart of gold. She’s a listener and kind and has been helping me clean house since I was pregnant with Cade and my hubby blessed me with help cleaning our little home during those last months of pregnancy. At that time I was working full time as a dietitian, long hours and coming home emotionally spent from patients and work drama. I had come down off the depression of finding out something was wrong with our little boy and was in those later months where something falls on the ground and you spend a few moments contemplating how vital it is to actually try and pick it up. Sooo, you can imagine how wonderful it was when someone else showed up to clean our tiny little Cape house in Needham twice a month.

And once we realized how wonderful it was to come home to a clean house, we couldn’t say goodbye to sweet Celia–it has been almost 5 years now and I’d still rather have help cleaning my house than pay for cable. She’s a friend and my boys know her, although she doesn’t come regularly anymore as she has a team of sweet ladies that rotate homes. But the minute she walked in and enthusiastically talked to Cade about how strong he was to be jumping so high, he just broke out in explanation. I’ve never seen him do that. He jumped right into conversation saying, “do you know I have prosthetics? These right here on my leggies. They have trains on them. But not trains with faces. I don’t have feet like you but these ones down here. And I can take them off with this button but they help me run fast like the wind. They also keep me from boo boos on my stumpies.” He went on and on and on. Be still my heart.

Because his tone was positive. Because he was matter of fact about his prosthetics. Open and with assurance. Because he had joy in his words and dare I say was almost, proud. And although I don’t ever think of him this way, he is different because he has to do somethings differently. And it was all absolutely heart-warming.

I remember thinking about it all when I was pregnant. How was he going to do x, y or z? But ultimately I think I was most concerned with how would he think about his prosthetics? As a momma your hope is that he grows into a confident, intelligent, kind-hearted person that faces his differences with an attitude of bravery and self-assurance. So hearing Cade exhibit all those feelings while talking on his own, without his momma in the room, to a familiar but not often seen person was incredibly heart-lifting. I stood there in awe. I could hear every word and was frankly too overcome with joy to cry. Which later I assure you I got over and did. Because we just celebrated his 4th birthday. Because he’s growing and whether I like it or not he is coming more in contact with the world and we all know that the world isn’t always very nice. And it’s just a mommaheart worry, those experiences that he’ll have to walk through, where some person says an unkind thing and it leaves a mark on his fresh heart.

So hearing his own words. His own confidence, his own way of processing what is his life was incredibly reassuring to me. It made me feel like we, at the least, are giving him some of the tools he needs to process his difference in a tangible and meaningful way. So what are we doing? How are we helping our little boy in terms of processing what is his reality?

To heck if I know. Haha. Just kidding. Thank God there is grace in parenting. One thing I think we are good about is talking about his prosthetics openly. It is just a natural conversation. We, by word choice, talk about “Kai’s feet” and “Cade’s stumpies”. We acknowledge that there is a difference but never dwell on it and we certainly don’t expect much difference in capability between our two boys. Cade will sometimes say, “but dad I don’t think I can do that because of my stumpies…” and we assist when needed. We are matter-of-fact about his legs. So when he asked my husband last year, when his feet were going to “grow in” like my husbands, my husband explained in kindness and humility that they wouldn’t, that he was made just the way he was for good and mighty things. There have been times he’s caught me off guard but they have been few and far between because he doesn’t seem to dwell on his legs and neither do we. Whether there is a right way or wrong way to go about this, I guess no one can really say. All I know is that we never rush him through his emotions. We never tell him it will be easy. We don’t gloss over his feelings of sadness, rare though they are. We never paint a different reality for him but we do absolutely assure him he will never be alone in this journey and we are confident that he can and will do great things.

We have been purposeful about not “babying” him for lack of a better word. If he trips and falls, which happens often, we are purposeful about encouraging him to get back up but not physically helping him. Not in a store where it can be embarrassing for me because people stare, not on a playground around his peers where he feels his difference a bit more. Clearly we’re not talking about an injury-inducing trip that we harshly make him deal with on his own, but just a standard trip and he usually just lifts himself up and keeps going. Being purposeful about this, I think, helps him with a sense of ownership over his person. We don’t rush to the aid because he frankly needs to know how to operate in his world without constantly being rescued. I will not hover over him because ultimately I believe he can do it on his own and I want him to know his limits.

Lastly, we’ve kept the dialogue open. Anytime he asks about his leggies or sees a picture flash by on my computer of him in the hospital or in a cast, we take a moment to talk about it and we tell him he can talk to us anytime about how he is feeling or what he is thinking. If he trips and sits on the ground awhile and I walk over to him, I do it with patience. I’ve even sat down before in a store aisle with him. Sometimes as a momma you can just tell when there is a feeling of discouragement hovering there. So I sit him up and sit with him and ask him how it makes him feel when he trips. And sometimes we’ve had some profound moments where he shares his emotions with us. I think sometimes all anyone wants when they’re dealing with hard things is to be heard. Whether you’re 2 or 92.

So if you are new to the knowledge that your kiddo will have to deal with doing some things differently or simply wanting to be more aware of how you relate to differences in the world around you, these are some ways that we deal with it daily. Expect great things from your little ones, allow them room for ownership over their own bodies and keep an open dialogue about how they are different and that it is ok to feel all sorts of different feelings over these differences. Value what they have to say and ultimately, listen. Oh the delightful thoughts that can come from little hearts learning in a big world.

So if you’re hovering there sweet momma, with a diagnosis you don’t like over a growing belly, be confident, it will be ok. Someday you’ll be years down the road and looking back trying to figure out what exactly happened that brought you to a spot where you’re little boy (or girl) is living life with assurance of their worth, a fierce bravery and confident hope. And somehow you’re the lucky one that gets to watch it all unfold. You see, what I first thought was the worst thing that anyone could ever give me has turned into my greatest source of heart-filling joy. Complete bliss. Although that bliss is not exempt from those mommaheart tears or hard days but is any momma ever exempt of that? Watching Cade thrive is the absolute greatest source of deep, heart-filling joy. And I am thankful.