Can you tell us a little bit about yourself and how you got involved with Hopeful Parents?
I came upon Hopeful Parents over a year ago as I was blog hopping, searching for similar perspectives. At the time I was in a spiral of exposure to other parents with similar disability concerns, but who chose bitterness and inertia over hope and action. I don’t recall the first Hopeful Parents entry I read, but I know I finally felt like I was “home.” Helping moderate the online forum and then writing for HP as insideout 510 followed shortly after.
I live in the Midwest with my husband and 2 daughters. I had worked in a global company in marketing, traveling overseas and juggling motherhood at the same time. While we knew our younger daughter was developing exceptionally, we reined our thoughts in, keeping our vision of the future expanded only by days, weeks, or months at the most, contracting to moments when troubling delays became obvious. Once we determined Addie’s diagnosis of Rubinstein-Taybi Syndrome, it freed us to finally cede the knowledge that yes, our lives would be different from here on out, we’d have more to learn to inform our vision for Addie. That was both liberating and motivating. So I quit my job to focus on my family and laying the foundation for fruitful futures for both of my daughters.
As it turns out, though there are behavioral, cognitive and communicative impacts on my younger daughter with RTS that require their own addendums to the Book of Mom, she does not have the intense feeding and medical involvements that many with her diagnosis have at this point. This has allowed me a bit of leeway to apply my stored energy – time and motivation displaced by leaving a somewhat intense job – to undertake more universal projects and roles that have a positive impact on the individuals and families affected by disabilities in my community.
And I am both grateful for, and saved by, this usefulness I have come by.
What is that you hope parents get out of what you write there?
Resonance is the main thing, I think. I myself feel somehow unburdened when something I struggle with is articulated by another human being, whether that human is on the other side of the struggle or still in the thick of it. I spend a lot of time watching and a lot of time thinking about what I see, hear and feel. My writing has allowed me to scaffold these seemingly passing moments into something that someone else might recognize, might be able to take something from. Perhaps that person will be able to augment their default perspective of a given passing moment with alternatives as a result. Maybe that is too much to expect. If someone is inclined to read to the end (for I am not conservative with description), that is enough. That much will serve as diversion and distraction. A need I am content to satisfy.
What are some of the benefits you’ve found in writing your story?
For me there are many benefits. Not the least of which is helping others to see the value of my clever girl more clearly. It is almost a reflex for people to underestimate a non-verbal child with differing cognitive machinery. Often, when they see her, she collapses into a one dimensional thing, a smiling head of blond curls who will live with mama forever. Writing about Addie’s string of tiny to towering victories allows me to draw attention to her cleverness, her complex thoughts and emotions, her fierce pride and sly humor, to her interest in staking a claim in her community, to her natural desire to make contributions that mean something, to not always be the receiver, but to be the one who gives.
Writing – even when things are not so bright and rosy – helps me to keep focus on the priorities and let go of the trivial. Documenting the smallest bit of generosity or understanding from a stranger nourishes my faith in humans, my faith that as they grow, people will recognize and value the power and beauty that I see when I look at both of my children.
It’s like watching a choppy slow motion silent film. It’s not exactly silent – the water rushing from varied spouts and spigots provides constant white noise, while the shouts and screeches of kids, their splashing and the sporadic mother-calls from the lounge chairs rimming the pool offer peaks and valleys of volume on top .
If she could talk, if she were inclined to call to me, I would not hear it. She does not speak, she signs and uses an electronic communication device, which is null and void in watery situations like these. I keep my eyes locked on her. Only Addie and the traveling small space around her are in focus. Everything in my peripheral vision out paces us both in a fuzzy blur. Here, as in most places, we both operate on a different time/space plane.
She grabs the rail of the play structure growing from the middle of the shallow area of the pool. Up until now, she has been content to watch kids on it or take the rare foray up with her dad. Today I see her foot lift. She will climb the first set of stairs. Toddlers and bigger kids swoosh by her, her body wavers just from the warmth of the bodies passing by. I lean forward and clench – the precursor to standing and running to bridge a gap, smooth a rough edge, and pick up safety slack – as has been my main occupation at this pool for the past 3 summers. Mostly I am moving, if I am recognized it must be by the top of my head as I lean over my girl. But this time I freeze where I am when I see she has made it to the first step. She is not facing me, but I can see shoulders hunch and her muscles quiver. I know there is a smile on her face.
She is happy with herself.
Let her be.
Her foot finds purchase on the next wet stair. She has to consider her hands now – they must move to the next bars up for her to be able to maintain balance. Cognitive mysteries and snafus in motor planning make this an unlikely possibility.
Now? Do I run now?
As I sit, my own hands reach to the side as I grab my own vicarious next bars up. But I don’t stand up. She wraps one hand around the next bar, then the other. She stops. I presume she is relishing her success once again briefly before she lifts her body to the top of the first batch of stairs.
She turns around at the top. Her arms straighten and fling back behind her, her knees bend slightly as her back curves. To most, it would look like she was about to launch herself back down the height she just climbed. She isn’t. She is looking back at how far she’s come. Her eyes are nearly jammed shut from the pressure of her upturned mouth corners. She smiles fiercely, only showing her bottom teeth. She did it. I am still seated. She does not look for me. She stamps her feet a few times, a variation of the Tarzan chest beat.
Children scale the same stairs and pass her at speeds she does not have in her repertoire. One of them brushes her ever so slightly, which on dry land, would result in cut cleanings, Neosporin and band aids for Addie. But not today. She shoots one arm out to the side and lifts one foot in response. She steadies herself.
I am still seated.
I can decipher by the sudden relaxing of her expression and arms that she decides it’s time to approach the next set of stairs. The next few have even more water shooting down. This one will make it harder for me to see because of the mist around the water spouts. I should get closer. But she is not looking for me; she is turning towards her next pursuit.
My back is straight and leaning forward. My teeth pin my lips between them. My hands are back in my lap, laced together.
These stairs don’t take as long as the first did. She does not have to stop and consider her hands, they move on ahead of her feet, messages coordinated. It does not occur to me until later, but the true enterprise is within sight as she raises herself each step on this level.
I am certain she will celebrate her victory for a few minutes and then attack the same feat in reverse, descending the stairs. The way she holds the rail now, it looks like she’s to do just that. Internally, I tell myself that I have made it half way. If I can remain where I am until she reaches the bottom, we’ll stamp our feet together.
But she lets go. She turns. She approaches the opening of the covered water slide. Someone gasps loudly. I look around. No one is stunned. No one is even watching. It must have been me who gasped. It is up to me to stay or go.
I stand. And I reproach myself immediately. I sit.
She puts one hand on the bar above the slide. Another child scurries up. Addie backs up and puts her hand on the back of the child. She means “your turn” but it might be taken as pushing. I need to go. I need to remind her to use signs and not put her hands on others.
I still don’t move. Somehow.
The child shrugs slightly and takes his turn. Addie bends to watch him go and shakes in near hysterics when she sees him through the tube splashing at the landing pad. She has always enjoyed watching others slide down slides at the park, so of course – this would be even more fun in water.
This happens again with another child, but this time she does not put her hands on the girl. She very subtly signs “your turn” as she backs up to give the girl room. Again, the laughing fit.
I relax a little; sure that she just wanted this perspective of the water sliders. She’ll come back down when it gets old. When no kids are coming, she goes back to the opening and puts her hands on the bar. She looks into the slide. She lets go, backs up and looks out for more kids in the direction of the stairs, now comfortable at this level.
No more sliders come. She circles back to the pinnacle of the water slide and holds on. Her shoulders lower and her elbows straighten. Her wet blond head rises by a hair and then lowers in the smooth arc. Simultaneously her feet step up to the slide launch swiftly one by one, her knees bend in graceful coordination with the lowering of the rest of her controlled body. After this short and beautiful display of discipline, she is squatting inside the slide, still holding the bar. She is days away from turning 6, many mistake her for a 3 or 4 year old, but to me she ages a few years in these 3 or 4 seconds.
Do I run to the top where she is or the bottom where she just may end up?
If she sees me, what will the impact be?
Will she stay or will she go?
The lounge chair under me tips forward suddenly. I am sitting too far on the end of it; my weight causes it to lift from behind. I move back as little as possible slamming the metal frame on the cement.
I look up again; there are no hands on the bar of the water slide. I see a blue patch of suit and soggy blond curls for a brief second before the opening empties to a bright, solid yellow.
She is gone. And I am still on my chair.
My frantic gaze rushes to the landing pad of the slide and waits for what feels like minutes, but could only have been seconds. I see a splash and a water shoe that I put on hours earlier. It’s attached to a leg I slathered with sunscreen, which leads to a suit that I pulled up. Under the suit is a body and a mind that decided today was the day to conquer the water slide. That body comes out of the landing pad and dance steps around the play structure back towards the base of the stairs. I see in her grin, in her wiggly shimmy back around that she is celebrating the teamwork of her own mind and body. She will do it again, I know.
I clap and I scream. My chair smacks the cement again. But I keep my booty affixed. Addie doesn’t hear the clap, she doesn’t hear the scream. She doesn’t need it. She’s headed back up to the slide again.
I stand to take my towel out. I arrange it on the lounge chair, even looking away from the structure for brief moments. I set the pitch of the chair back where I want it and sit all the way back, lowering my shoulders, unclenching, leveling my chin. I have my shades on so no one can see my filled eyes as I watch Addie scale and descend again and again and again. Sitting in the sun, I look like any other mom watching their child have fun from afar.
They got nothing to stamp their feet about, though.