Project Life

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It’s on my mind to name something that I suspect all parents of kiddos with special needs struggle with. I often see my daughter as a project. It’s a dangerous and warped view. It makes sense, though, that all the doing takes over. From Norah’s early days she needed to be fixed. She required open heart surgery, medication for severe reflux and hypertension, early intervention. I have waves of panic even now that flood me with doubt. Am I DOING enough for her? I reach out to other parents of kids with Williams Syndrome (WS) for support and advice. But a part of me is also checking in and comparing. How is Norah doing compared to other kids? How am I doing as her mom and advocate? But regardless of the feedback something feels off; icky; insincere to my true intention.

When I’m with my family and tapped into that intention it is clear; just love…just be….just be love. What is love? It’s presence; being. Love is being and being is love. Fixing and controlling get in the way. I think I imagined my Norah as a flower and myself the gardener. I am but another flower. Let her see me follow the sun, soak up the rain, weather the storms, become compost to nourish her at her roots. Let me not presume to prune away the parts of her that do not match the other flowers. Let me be curious to see her glory. Curious to learn her colors, the shades of which I’ve never seen.

Opening to that intention is wild and scary. Let go? Yes. Let go.

So, I often swing wildly from two parenting extremes. Sometimes I am very goal-oriented and attempt to facilitate Norah’s independence and education with fierce determination. Fix her. And then, in exhaustion, frustration and ickiness I let her be altogether. I tell myself that’s letting go. It’s not. Neither of these extremes is at all ruled by my deepest loving intention for Norah. They are driven by my ego. Even in the letting go I am trying to DO it well.

Norah and Charlie are at Summer Camp this month. This year Norah is a “Chatty Caterpillar”. I asked her a few days ago, “If you’re starting camp as a Chatty Caterpillar will you end it as a butterfly”. Her answer, “I’m a beautiful butterfly”.

It brought to mind a story that I first heard in a podcast by Tara Brach. Here is the written version.

The Butterfly by Kazantzakis from Zorba the Greek

I remember one morning when I discovered a cocoon in the back of a tree just as a butterfly was making a hole in its case and preparing to come out. I waited awhile, but it was too long appearing and I was impatient. I bent over it and breathed on it to warm it. I warmed it as quickly as I could and the miracle began to happen before my eyes, faster than life. The case opened; the butterfly started slowly crawling out, and I shall never forget my horror when I saw how its wings were folded back and crumpled; the wretched butterfly tried with its whole trembling body to unfold them. Bending over it, I tried to help it with my breath, in vain.

It needed to be hatched out patiently and the unfolding of the wings should be a gradual process in the sun. Now it was too late. My breath had forced the butterfly to appear all crumpled, before its time. It struggled desperately and, a few seconds later, died in the palm of my hand.

That little body is, I do believe, the greatest weight I have on my conscience. For I realize today that it is a mortal sin to violate the great laws of nature. We should not hurry, we should not be impatient, but we should confidently obey the eternal rhythm.

As I practice dropping regularly into the deep love I feel for both of my children I find a truth there about the rhythm of life. Letting go of orchestrating Norah’s life allows me to tap into the very inner wisdom that will guide my actions. Because wise action is so necessary when parenting special needs children, and all children (including our inner ones).

What wise action does this reflection bring? In this moment it is patience with me and my own parental unfurling. It is not setting a goal to be wise. It is touching my intention in as many moments as I can muster and understanding and forgiveness for all the moments that I forget.

To name something else, though, as right as this feels it is equally difficult. There is no To Do list, no box to check. It takes heart and struggling against our own cocoons. Where special needs are involved we ride the daily waves of noticing that our kids unfurl in unfamiliar ways. It can be excruciating to watch. I am regularly stricken by my grief over Norah’s struggles and protect myself by turning away. On my bad days I feel I’ve failed her already. On my good days I recognize that it is enough that I’m digging deep and practicing.

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Why We Walk: All In for WS Awareness

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We hosted our first ever Walk for Williams today and despite a discouraging weather forecast, a locked facility door with no response from management (thanks Uncle Chuck for being an amazing lock pick) that caused a massive delay getting setup we had an awesome event. The energy at our walk was just magic. We have mounds of people to thank for working to their limits and jumping in with great enthusiasm. And once we’ve recovered and my mind feels clear enough to capture it all I can’t wait to share. But meanwhile, because it’s the day of our walk and we have so many Team Norah supporters out of town here in the US and England. I wanted to share a snipit of her story from our “Meet Norah” poster. This is very simply why we walk.

Fit All In

I watch my daughter, Norah, every day get into EVERYTHING. I’m not going to lie, it drives me nuts sometimes *cough (often). It’s who she is. All in. Norah doesn’t just examine an item; she devours it. She doesn’t just hear music; she consumes it with her whole being. She doesn’t just hear your feelings; she owns them with you. She doesn’t just want to say “Hi. How are you?”; Norah wants to put you in her pocket and take you home.

Doesn’t this sound like an amazing way to be and live? It does. But when you see a person exist like our Norah does it’s not what you expect. Most of us don’t live this way and if/when we try we find that it leaves us quite vulnerable and raw. Because to live this way means you will tear things apart that other people want intact. It means any song anywhere will stop you in your tracks and make you do any one or combination of these things: be still and mesmerized, dance, sing, cry, scream, say “stop” or beg for “more”. It means that when someone anyone else is upset you will break down…no.matter.where.you.are. It means when someone anyone else is overjoyed THAT will consume you too, perhaps even physically…no.matter.where.you.are. It means you will want nothing more than to belong even though your all-inedness will make it nearly impossible for you to fit in.

Norah has Williams syndrome (WS) and she, like most other people with WS seems programmed to live “all in”. I am jealous. Until I think of the scrutiny she will face in a society who is programmed to “tone it down” and “fit in”. This is what brings us to our quest for awareness about Norah’s rare genetic condition. We know that education and understanding are necessary for tolerance, then acceptance, then belonging for EACH/ALL OF US. Norah has so much to teach us about living with our whole hearts if we can lean in to the discomfort of “different”. When we connect with and learn from people who look, act and live in ways that are unfamiliar to us we grow. And when we do this our children do this. And as individuals we live more whole-heartedly. And therefore as a society whole-heartedness becomes the norm. We evolve.

If this seems like a tall order from a small awareness event then dig deep. The WS spirit reminds us that living “all in” means embracing each moment, good, bad, joyful, sad, scary, uplifting or any combination we face. And just walking through it as we are.

 

Joshua (24, WS) and Norah (3. WS) at our Walk for Williams.

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Sentence Complete

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Big news in the Burden house! Norah said her first complete sentence today. She was playfully avoiding laying down for pre-nap story time by opening and closing her bedroom door and saying, “bye”. Then there it was, “Bye. See you bit.” And it counts! She knows each of those words and she put them together without any prompting. We’ve waited 3 years for this and are over the moon. Trying to avoid bedtime (noticing a trend?) she tried to say, “read me a book” but the words got all jumbled. We believe her speech is taking off. It’s certainly becoming much more automatic lately with two word combos that don’t have pauses or require prompting. Her signing is taking off at the same time. Just a quick post to share the big news with all of you that love our “bug”. Bye, see you in a bit. 🙂

Boy Meets Cake

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Extreme Makeover: Charlie Addition

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“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?”
― Dr. Seuss

One year ago today our lives were forever changed in a most wonderful way. Charlie was born. Norah became a big sister. Stu and I became parents again, this time to a son. A year later I can remember life before Charlie but I can’t imagine it without him. From a daily (and nightly) work standpoint life with two has been crazy hard. But from a delight standpoint Charlie has added so much to our family. He loves all three of us so thoroughly that none  of us can get near him without him physically leaning in. So, I lean in all day, because THAT is just the “stuff”. Charlie is a funny boy who asserts himself, wants to be heard,  understood, wants to join in. He insists. He’s curious and bright. Charlie looks just like his father. And when Charlie’s motivated and interested he has a knack for catching onto things….just like his father. It seems so effortless at times and I’m regularly amazed. Both Charlie and Norah are developing SO much everyday. They are clocking more time each day giggling together. They are learning to greet one another and share. They encourage one another through competition and through celebration. They are so much fun to raise as individuals and as siblings. Charlie has redefined each of us and our family as a whole. He has done so with flair and laughter. Happy Birthday to my Charlie! I love you so much there’s a lump in my throat. I’m so proud of who you are and look forward with great delight to discovering who you’ll be.

Big Girl Pants and Pig Tails

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Big Girl Pants and Pig Tails

Norah has started telling me BEFORE she needs to go potty. So, on a whim we’re trying big girl pants today. The communication piece was the one we thought might take the longest with potty training but she is showing readiness across the board. I don’t know how things will go from here but we are so pumped about her initiating all of this and about her energy over being a big kid. Well, a big kid who gets lots of candy for using the potty. On a funny, maybe tmi note, Norah’s first lap around the playroom in her big girl pants included a little locked-knee monster dance. I imagine she was enjoying the sensation of being diaper free for the first time ever.

Remember Me?

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It’s been so long since I’ve even logged into my blog. Imagine my delight when I typed in my user name and my password was remembered. Check box. Remember me. There’s so much going on lately. I can’t keep up. I have so much to share about Norah and Charlie. But I need to lead with a confession. I am overwhelmed. Being a mom of two is just so intense. Nothing ever gets completed, ever. It’s the same thing over and over day and night and it’s kicking my @ss. I know, it’s horrible to admit or complain. Other people deal with way more. People who have way less, deal with way more. The kids and I are amazingly supported by a loving husband/daddy as well as by our extended family. But, I’m just putting it out there. I am overwhelmed. And telling myself I have no right to feel this way hasn’t really kept me from feeling this way. So, I’m owning it but not harping. On to the better and brighter side of this journey. Norah and Charlie. Charlie and Norah.

I have to catch myself lately. I feel so very aware of the fairness of having two. The time devoted to each throughout the day. And Norah is an attention getter. She’s talking more every day. Her attention-getting techniques (good and bad) are better honed than her brother’s. But Charlie is NO slack in the attention-getting department. Jealousy is beginning to rear it’s ugly head. Competition can be a wonderful motivator. But as a parent you really do wonder in those moments if you’ve made each child understand how truly loved and appreciated they are as individuals. Even posting this I’m worried about paying too much or too little attention to each child’s accomplishments. Stu and I are both so intensely proud of both of our kids. Words will never express. We can only hope that they can feel it too.

Hard to grasp the fact that Charlie will be one in just a little over a month. For his first six months I was a bit concerned with his lack of movement. But, uh, that concern is GONE. There is no stopping him now. When we went to the beach just a month ago Charlie began a true crawl. The next week he perfected it and is so quick now. But what really threw us is that Charlie then began cruising, climbing and standing independently (for a few seconds) nearly immediately. He is SO hooked on the independence that he is working his tail off to keep up. You can often hear him grunting around the house. He is climbing the trampoline then standing, holding the bars and jumping. I did not imagine he would be doing so much so quickly and I’m ecstatic.  Motivation is everything and Charlie has proven himself a very hard worker when motivated.

Speaking of the beach, Norah had a breakthrough moment the week after our vacation. Back at home we were talking about our beach trip with Norah’s speech therapist. I was naming people who were with us, when, from across the room, Norah added to my list, “Donald” she said, as I paused to remember. This was the first real indication we’ve seen that Norah understands when we’re talking about a past event. I was floored. I really feel like I can’t even articulate how major this feels. We do so much talking about  future and past and tying it all together. But that is very abstract for any child. To see her “get it” was such a triumph.

Today we had new questionnaires to answer for the research study Norah participates in regarding Williams Syndrome and language development. Why? Because Norah has begun to string two words together. You probably remember that Norah has been saying “I love you”. Heck, she’s been saying entire lines of songs. “No more monkeys” But phrases like that, while she may understand the context and sentiment, are really one word until we can truly say she understands each word individually and is stringing them together independently. And then there’s the two words but not really together stage. “Hi” pause “Daddy”. But just over the last few days the words are combining more seamlessly and naturally. “Hi daddy!” “More cookie.” “Go outside.” “More cookie. More cookie. More cookie. More cookie. ” 😉 Now mama’s gonna string three together for my Norah Bug. You go girl!!!!! I just LOVE her sweet little voice.

And speaking of sweet voices. Charlie is joining in the household chatter. He will, hilariously, grab a folded item of clothing from the laundry basket and before his hand has made it to the edge he’s saying “uh oh”. It reminds me a little of the I can’t help myself and what’s about to happen “uh oh” you might hear from an adult who’s being overcome by the need to dance an embarrassing dance because the music is that good. “Uh oh”, this neatly folded shirt is compelling me to mess it up and throw it onto the floor.

Charlie’s naming things, “ball”, “car”. He has an adorable and enthusiastic bear growl, and doggie bark “ah ah ah ah”. He’s clumsily throwing a ball. Pushing a box across the room like a walker. Copying me drawing on the chalk board. Releasing items in the bucket for clean up. He is just so AMAZING  to watch. And it’s all happening so freaking fast that I’m certain I’m forgetting something.

I want to come to terms with the fact that it makes me hurt a little for Norah to see him develop typically. We knew Norah was working hard but I certainly didn’t appreciate how easy it seems for a neurotypical child. I didn’t appreciate how little you had to intervene. But, again, I want to come to terms because I want to just relish who they are and not get bogged down in the comparisons.

We are discovering how we all work together as a family. It’s exhausting, humbling, rewarding. It’s a work in progress. It’s forever that, I guess. But I am so proud of my family. Stu, who shoulders so much and complains so little. Who loves me and is patient and kind even when I cannot muster a smile for him. Norah, who is a bright light to all who know her, who is obedient, who is curious, who is resilient. Charlie, who is funny and smart, who is sweet face nuzzles, who is strong and sturdy, who is confident and assertive. I, who am working myself to the bone to yield a neglected marriage, unhappy kids and an unkempt house. Okay, that’ a little dramatic, but only a little. I’m open, as always, to advice. How do you do it, mama’s? What gives? Because something’s got to.