I am sharing this Father's Day post over on Today Parenting.. For all of these Father's we honor on this special day.. 6 Secrets of Strong Special Needs Dads... Happy Father's Day!
" I'm not perfect". I told my teen. " I made a mistake, and I'm sorry." Still, as we sat down for dinner, Superbowl hum in the background, my daughter continued to make her point. Yes, she was right, but that wasn't the point I wanted to make." Listen," I told her.. "We are all imperfect. I can't go back and fix it, but I will try harder next time, and I am sorry I disappointed you."
I wanted this conversation to be over, and yet, it wasn't. I tried again.
" When you are upset over your own mistakes, or failures, I don't yell at you over and over again, Do I? I asked, in my leading, let me teach you a lesson voice, "instead we talk about how you can make a change, and do better going forward." Soon the incident was forgotten, soothed over by Chris Martin, Beyonce, and Bruno. All was good and happy again in our household.
I fell asleep thinking about my daughter, and the constant high standards she holds herself to- the same standards she was holding me to that very night. And how in these very situations what we both need is more kindness, and how I had to stop and tell her how much her words hurt.
I have barely put my car in park when I hear Zoe's ardent plea from the backseat. " Mom, can I walk at this store?" It is our last stop and I try to recall how shaky Zoe's legs were when I last helped her back into the car. A quick glance at her face and what I see reassures me. Her eyes are bright, her face slightly flushed, but she is smiling too. All signs that she isn't too tired yet. At this store, we are just picking up something right inside the door, so it is easy to just say yes.
As I help Zoe out of the car, she looks up to me and grinning asks, "Mom, you know what would be the best gift ever?" This is a game we have been playing lately, the girls and I naming both real and imagined items as a best.gift.ever. "What?" I ask pausing, as I picture Zoe's painstakingly prepared Santa list sprinkled with favorites like Barbies and nerf guns.
"Not needing my wheelchair," Zoe replies. "That would be the best gift ever." She is smiling still, this happy kid of mine and in this moment I can't tell if she is content with the understanding that this is a dream gift, as unattainable as the Hoverboard she imagined placing at the base of her power chair, or if she is hopeful and excited, believing that maybe one day this gift could be real.
Zoe has always been my Christmas kid. In our home, we celebrate with simple holiday traditions during a season that seems to bring sickness too. We embrace the Christmas jammies, collect seasonal blankets, and stuffed animals and have amassed an impressive collection of holiday DVDs. The season starts with the arrival of our Frasier Fir Christmas tree fresh cut from North Carolina, and we bake sugar cookies through December as the excitement builds for Santa's visit to our home on Christmas Eve.
And then last year Zoe started middle school, and because my kid is so social, I told my husband it was time, we had to have the talk. We whispered and worried, my husband and I, unsure how Zoe would take the news that Santa isn't real. That all of these traditions she loves are based on this one untruth. I couldn't risk the fact that Zoe might be outed and laughed at if we didn't tell her. And so we sat down to talk, and in the end, her face full of emotion Zoe looked to her father and I, stunning us by asking, "You did all of this for me?"
Through the years, Zoe continues to teach me to count our blessings with each new item she adds to her Christmas list. A Fisher Price basketball hoop. She has grown stronger and can balance with her walker. A Barbie dream house. Her mind is now full with imaginative skills and she loves pretend play. A deluxe collection of Sharpie pens. The strokes of her pen are steadier now and her grasp stronger, she is delighted with drawing. The pink Rebel Nerf gun. She fills the satchel on the back of her walker with nerf bullets and moves through the house with ease on sneak attacks. Lego Friends Beach house. With her brain and her hands in sync, a flashlight to assist her affected vision and a lego base to stabilize her projects, she is able to spend hours building. My blessings grow with each new Christmas list.
I hold out my hand to Zoe and help her step out of the car. Still smiling, she is waiting for my response. Her eyes meet mine and I can't quite tell if it is hope or mischief I see. Still, I guide her forward, adapting my own strong stride to match her smaller, slower steps. I consider the miracles this season brings and I realize that maybe I do believe. Maybe it is hope, maybe it is Zoe's joy, but for now, we can both believe that it can be real. With Zoe's hand tightly held in mine, I sigh. " Yes, Zoe," I say, "that would be the best gift ever."
A Mom friend of mine put it ALL out there the other day, when she declared her intent to get her daughter the ONE thing she really wanted. And it wasn't a toy, a fancy trip, or even the desire to " be like everybody else" ( something my daughter frequently wishes for). Her daughter really wants to have a sleepover.( I am hoping my daughter gets to be the lucky host!)
When my older daughter ( Zoe's BFF since they were babies) approached her teen years, it was a big adjustment for Zoe. I thought Zoe and I had already discussed all of the most heartbreaking topics possible, like how long she would need her wheelchair and walker, and why she was different than other kids her age, and how come people sometimes stared. Until we began the constant, ongoing discussion of why Olivia no longer wanted to to play with Zoe, had no interest in Barbies anymore and could not even be bribed into floor time, pretend play with her sister. It was all Zoe really wanted, and it took a lot tears and time for that to finally pass. Eventually we adjusted, and we got creative. We crafted, play games, went crazy with Rainbow Loom and made Saturday family movie night- but still things just weren't the same for Zoe, she missed creating and imaginative play with her big sister.
With Zoe now in middle school , I began searching for something new that was fun and also more socially appropriate for Zoe to share with her peers, and I was thrilled to discover Lego Friends.
Perfect for a girlie girl like Zoe, I tested the waters close to Christmas with the Friends Lego Advent Calendar. I waited for a sleepy Saturday morning, when Zoe and my teen were pretty chill and pulled it out . We opened the box and the both girls grabbed a few of the bags for the first week of December that had already passed and Zoe began assisting her big sister with building. And then, caught up in a lego building frenzy, they spent another two hours laughing and building and eventually asking me if they could finish the whole box.
At Christmas, Zoe and her dad put together a car , while Olivia had fun assembling a large Lego Friends house for Zoe, who spent hours in imaginative play with her Friends village situated on her bedroom floor. Zoe's birthday is the end of May , and it is no surprise her list has several " L" words on it. Her independent reading time has included the Lego Friends Easy Readers and Chapter Books and together, Zoe and I have finished the Lego Friends App Game for the iPad twice.
Recently Zoe began building Lego's completely independently, beginning with the Classic Creative Bricks instructions, and then showing off her work on Instagram.
The Lego Classic Creative Kit is a lot of fun for her and she can build them quickly, as the directions are easy to follow along. Legos have been great for boosting her confidence, increasing her problem solving skills, and of course - the cognitive and fine motor benefits are huge.
And like a Mom, I do some creative engineering myself.
When I think too much time has passed since the girls have had relaxing fun time together, for a special treat I pull out a new Lego box. Olivia enjoys the building process all the time declaring that she is just helping her sister out- but it is the joy on Zoe's face that fills me. The way she lights up with the understanding that at least for a little while, she's got her old playmate back again.
Please know this is NOT a sponsored post. I think the LEGO brand does an awesome job making their products, and providing lots of free inspirations ; for new projects ( check out their website) , books, videos and apps all readily available through major retailers. We have invested in LEGO products because I feel they are worthwhile, fun and have great learning and therapeutic benefits, not to mention of a mess of memory making moments.
I start and end each day thinking about my kids, my mothering, and I always question if I am getting it right? Like most other families, we have our normal moments of fun and games and everyday silliness, but we have the other moments too- when kids are tired, and stressed and there are tears. Times when we have to talk about medicine and doctors and how we are feeling, and then decide how to best handle it.
We shouldn't second guess ourselves, but we do. We should do more of celebrating the small moments.
In our house, we get up each day and just try our best. Something I have always taught Zoe, my youngest daughter, affected by mitochondrial disease and her big sister, O - now in high school. We may not feel good at first, or we may not achieve what we hoped to achieve that day, so we try our best and we adapt and adjust.
I don't know why I never considered this philosophy for my own mothering, the idea that just trying my best is good enough.
Yesterday was my birthday, and for the first time since her early childhood, Zoe's big sister, wrote me a letter via my blog, below. I want to share with other Mom's of special needs kids too, because it was written from the perspective of the older teen sibling. I want you to read her words and know that all those small moments? They add up. And that sometimes, just doing your best IS really good enough.
HAPPY BIRTHDAY MOM ( Originally posted by O for my birthday)
This is not Suzanne. This is her daughter O (don’t worry she knows I’m posting this). It’s my mom’s birthday, so this is a mother appreciation post (half revenge for the times you've hacked my Instagram/Snapchat). Funny story, my mom actually forgot how old she is turning, so she had to do the math. My mom is the best mom, in my opinion, but I’m biased. My mom has done so much for me. Ten months ago, I started high school and I came home the first day and cried about how hard everything was. She told me I’d get better and everything would be okay. She was right, like she always is. Now, those hard classes aren’t too bad. High school isn't the only thing she's helped me through. She helps me through everything, and I love her to the moon and back.
This is actually part one of my birthday present. I think I'm going make a coupon book for hugs and laundry folding. In addition to cooking and mothering, my mother is great at spoiling shows for me. I’m sure some of you have read her “How I Can Connect to Kristina from Parenthood,” article. Well I'm on season 2 of Parenthood and she sent that article to me. Spoiler alerts were not given to me before I read it. Thanks, Mom.
My mom does do a lot for me. She recently chaperoned my show choir trip to Anaheim. She sat through lots of sing alongs, Hairspray, complaining, and laughter just to make sure I felt well the entire time and to watch me do something I love. We also went to the happiest place on earth for the first time. She says she didn't like it, but I know she secretly did. I'm so glad she was there the entire time, especially because I was so proud to be on that stage and I could tell she was too.
On her birthday today I would like to make the point that my mom is my favorite person in the world. I'm so glad and thankful that she is my mom and I couldn't imagine a world any different.. And Mom, I love you. I hope you enjoy your special day. I love you, Zoe loves you, and Dad loves you, too.
When Marie Holmes, one of the three recent Powerball winners sharing the $564 million dollar jackpot officially claimed her prize, she said the best thing about winning is being able to provide for her children. Holmes is a single mom with four kids and was living in a trailer. And most parents hearing her story will believe the stereotype that when she said “provide for” she meant food, housing and a secure future for her children, all under the age of 7.
Holmes has one child with cerebral palsy, which suddenly makes her not so different from me. I know what Marie Holmes meant about wanting to provide for her children. I am the mother of a special needs child, and I know the hurt of wanting to provide for your child, and also the advantage of being lucky enough to do so.
The hurt means spending your nights clutching your sobbing toddler tight against your chest, not knowing what is wrong, when all you can offer is the comfort of your touch, then quietly wipe your tears away.
My prose is not brilliant,
My word choice just fine
Dr. Seuss, he inspired
this poem that rhymes!
A birthday gift of reflection,
A look back to when,
This is Your 64 Bruce,
Oh The Places You’ve Been!
“ Congratulations! Today is your day! Your mountain is waiting So.. Get on your way!”
- Excerpt, From Dr. Seuss, Oh The Places You’ll Go.
This Is Your 64, Oh The Places You’ve Been!
When the sun has gone down
And you find time to sit,
You move fast through your years,
Asking..… “ WHAT IF?
With my children, I am present.
The way I wait while Zoe haltingly speaks, starting and stopping before she strings her words together, until finally the garland that is her sentence is strung before me, her thought process complete . She tells me her secrets and I hold them close, I hold her close, until she is ready to move onto something else.
I stay the course, ever present, while my teen girl travels her waves of emotion. Standing still I give her something to hold on to, I am present , if she reaches out for me.
I am present with my husband, as we connect in the after work hours. We sit and consider our day, filling the space of the hours we spent apart. We compare and critique and the children sometimes sneak in to our present conversation. And then we all come together again at the table for dinner.
In the evening there is homework, and reading time and baths. Medicines and schedules, and must-do things that parents do each night.
There is laughter and sometimes tears, and hand holding and hugs and when I am done, I am happy to be climbing into bed with my husband again.
The bottle of Pinot Grigio I bought just for me, still unopened on the kitchen counter.
On my desk is the new book I want to read, still untouched.
My favorite television show has been recorded.
The colored threads are sorted, and the patterned muslin clipped into a hoop, where a sharpened embroidery needle rests waiting for my hand to hold, while it gathers a fine dust.
In the bathroom there is a deep tub , that used to only be mine, alongside it a deeply piled grey rug to comfort my tired wet feet, after. There is also a shelf lined with bath salts for soaking, lavender, euculyptus and green tea, preserved to stay fresh in their unopened jars.
In the dark, I finally sink into the softness of my pillow, alongside side my husband again, his hand is on my waist and content I can’t help, but to fall off to sleep.
My eyes are closed yet I can see the words I scribbled into my writers notebook today, before me, one after another. Overflowing words I need to empty onto the page.
Tomorrow I will try harder.
Tomorrow I will let the list of things-to- do linger and grow longer.
Tomorrow, I will drink some wine and pour those salts into a deep hot bath, just for me.
I will read a book sitting in our pretty room I never sit in- and then I will write the words that need to flow.
My hands will reach for my forgotten project, and I will sit upon my couch and watch my favorite show.
Tomorrow, I promise I will try a little harder-
To be present with myself.
I used to run right by it, before I was a Mom. Simplicity, the beauty of the simple things in the moment.
My standard pace was more of an easy run than a walk, easy to achieve with long legs that allow for leaping steps. And sometimes when my husband and I are out alone ( a sitter at home with the kids, the clock ticking) I return to this habit, when it is just he and I ." Slow down " he tells me. " We aren't in a hurry" he reminds me.
When Zoe began her preschool years, we started taking her walker everywhere and I learned not to ever hurry, it was unfair to rush her, so I learned to slow down even more to her speed. I would call out the flowers on the path as we passed them by, I learned to listen to the songs of the birds in our desert.
From our life I have gained perspective, and embraced simplicity.
The simple things, like opening the doors to our patio at Sunday dinner, because finally, the desert is cooling off.
Sometimes the subtle things, they can slip by. The start of school this year brought change. So. Much. Change. My first born teen girl adjusting to high school, where everything was new; the scratchy uniforms, friends,rules, hours of homework and higher expectations. My heart felt overly full her angst and excitement, with her beauty and with amazement that my first girl, is so grown up.
My daughter Zoe started her second year of middle school with a new sense of awareness, asking me to to fix the “ little girl “ pattern on her new wheelchair seat, so sure was she, that its pale design would make her stand out, that kids would stare at it. And so I spent hours filling in pale yellow stars with a black fabric marker, eager to erase whatever unease I could.
And then in all of this back to school flurry, Zoe got sick. Really sick. The kind of sick that causes a kid to miss twenty days of school and back and forth calls and appointments with doctors and specialists. I felt pulled back to a time when she was little and her sickness was all consuming.
But this was different. Zoe is older and smarter and her tear-filled eyes would meet mine and she would ask me over and over, when it would stop, ask me why she was so sick.
A few weeks ago, on our last summer afternoon, my girls and I escaped the heat by heading to our local movie theatre. As we stood waiting in line at the snack counter, my soon to be freshman took hold of her younger sister’s wheelchair, took the movie tickets from my hand, and called over her shoulder “ I got Zoe, Mom, we’ll go grab our seats”
Zoe smiled and waved while I stood stunned, watching my oldest daughter making her way to the theatre, pushing Zoe, weaving through the crowds with confidence. Once she reached our theatre, I could imagine her carefully helping Zoe out of her wheelchair and into her seat. I knew Zoe was thrilled, and I was too-This was my girl, doing what she was supposed to do-growing up and letting me know that she is ready for more.
We spent a lot of time together, sharing this summer of anticipation-that would be forever marked by her transition into high school . These are just some of the things she taught me.
1. I want you to expect more from me, and then remind me I can do it. High school teachers already know this truth, and that is why they come on so strong the first week of school, so parents, be ready. Do our teens get overwhelmed? Sure, especially when everything is new and expectations are higher. Our teens are ready for more, but that doesn’t mean they have the confidence to match. Create opportunities to build confidence, pointing out small successes whenever possible.
2. I need to stay socially connected, so don’t take my phone away. Teens experience a huge social shift as they start high school. Some friendships fade with the transition to a new school, and new classes and clubs that can leave teens feeling vulnerable and disconnected until they settle in. In our home iPhones are placed on the kitchen charger at bedtime, and the rest of the time we all try to follow basic phone use etiquette. It’s tempting to take the phone away as a form of discipline, but that’s how she connects to her peers, and teens have a strong need for connection.
Standing at my bookshelf, my fingers follow the worn, familiar feeling of my books, old friends that I have forgotten. There are books of poetry, art and religion; books on growing things and making things; books on building business; books of dreams once pursued. Mysteries, memoirs and fiction that used to carry me far, far away.
I have come here now for a book of recipes, yet still, I am drawn to the now-dusty books about parenting. A shelf that started with a copy of What to Expect When Your Expecting and was filled to overflowing when the unexpected happened. Books on epilepsy and illness, advice and encouragement, books I once feverishly read my way through -- looking for answers, that only life would bring.
I find the baking book I have come for, it's sunshine yellow cover calling out to me, the vintage rose color calming me. I bring it to the kitchen where my daughter Zoe is waiting. No longer does she need the step-stool, or even for me to stand behind her. She stands by herself, leaning against her walker for balance. In middle school now, she has grown out of the little girl apron she used to wear, and favors a pink t-shirt instead. She smiles at me, her confidence and excitement radiating as she finds the page and begins to read the recipe aloud. Her supplies at the ready, she starts with slow, careful movements.
And with patience I stand back, knowing that what makes this recipe work is not my help or what is written on the page.
It is the shallow pan that will catch the overflow of flour and sugar, carefully measured by a shaky hand. It is the notepad nearby that will keep count, by Zoe's written " X's, the number of cups she has poured. It is the flattened bowl that will hold a steady surface for eggs to be cracked and pieces of eggshells extracted.
This is different from when I bake with Zoe's big sister, when it is a team effort to try new techniques, perfectly fill each measured cup and and correctly approximate each teaspoon, that puts my teen girl and I in unison. When it is her idea of what to make, her confidence growing with each new creation. Our collaboration brings us closer together.
Later, when I am alone, the recipe book still lays open, the written words worn, splattered and sometimes hard to read, this recipe replaced by real life.
I know now it is the real result that is better than the expected. It is the authentic, on-hand ingredients that deliver goodness. It is the directions we ignore, the techniques we adapt and the new processes we create that make each batch wonderfully unique -- and never exactly the same.
It is the sweetness that rises above, that masks the imperfections and the missed ingredients.
This is the real recipe of mothering.
“ Can I die, Mom?” my daughter Zoe asks. She is standing in her walker, pausing, with one hand on her hip, in a perfect petulant tween pose. Her hair, middle school trendy, straight and long, flows over one shoulder onto the front of her graphic t-shirt. I take all of this in, how good she looks as Zoe’s eyes meet mine. She is searching my face as if this is an easy question and the answer should be floating through the air, on it’s way back to her by now. Why is she is asking me this? I wonder. Why now?.
Zoe has been on the same daily medicines for years, and for the most part, her care has not changed. “ Well.. I begin..” and I move closer to her, tossing my dishtowel down on the counter behind me. I am leaning into her now, just inches her face. I can see the way her eyes have filled with tears. Clarity is all mine now. Her tears tells me how to answer, how careful I must be. How I will find a way to be honest yet, protect her from more hurt and worry, because this is real, this is us, this is love.
It was a Doctor that first taught me this lesson. I sat in his office, my 6 foot tall body cramped and folded onto a child’s bench. This is how we always sit Zoe and I, side by side as the doctor examines her. “ We tell our patients as much as they are ready to know” our doctor once told me. “ Ready to know.. “ I mumbled.. unsure. But with more years of mothering came more knowledge too. When Zoe was in preschool this meant explaining to Zoe “ your walker helps steady your tired legs”, an explanation that evolved over the years.” Follow the cues”, the doctor said that day. “The person asking the question will always show you how much they are ready to hear”. Talking about the future with someone, answering the difficult questions Zoe’s big sister sometimes asks, I have learned to watch and listen first. Through tears, anxious faces and scattered half questions, I always find my answers, because this is real, this is us, this is love.
It is bedtime when Zoe’s big sister calls me in. She is tired and unwell, and sick of sometimes not feeling so great. She is my “ typical” child, less affected than Zoe, yet diagnosed with the same metabolic disorder. She is a teen now, and she rarely holds back, she is an achiever. We have raised her to be this way. Compared to her little sister, she seems so typical and so there I was that night, unprepared for her truths . Her tears come fast. “ I am tired of being so tired” she says, “ and that I can’t do as much as my friends..” and so we start talking about what she can do and how we can help her feel better. The words her father said to her at dinner that night, come to mind “ She is on her way, he says- she will do great things.” I repeat this to her again, and I see in the half light, the way she smiles. I feel her sigh, as she lays against me. Her body now almost as long as mine, laying now like she did so often as an infant, her head against my chest, her long curls masking her face. This first daughter of mine, I would do anything for- this is real, this is us, this is love.
Zoe is laying in bed, and just when I think she is dozing.. she asks me for a hug. I gather her in my arms and look into her eyes, are you okay ? I question. In answer, she sniffs a bit and my fingers go to her cheeks and softly wipe away the wetness. She tells me about how hard her work is at school, and how she worries she is not getting better. She is comparing herself to her classmates- she questions why they are advancing faster in their work and she is so slow. “ We are so proud of you ..” I begin to say. In the middle there is praise and more praise, I end with the promise that we are so proud of her always doing her best. This belief in her ability satisfies her into sleep because this is real, this is us, this is love.
Hours later, Zoe’s father comes to find me. I have fallen into a deep sleep in my daughters bed. He has awakened alone in our bed, he is restless and he too, needs me by his side to soothe him back to sleep. He first nudges me then gently takes my hand guiding me out of the dark room, reclaiming me as his own. I slide into bed beside him, at peace where I am meant to be, at home with his arm around my waist- this is us, this is real, this is love.
“ Mom, when I grow up I want to be a nurse so I can help people..
" Mommy, will you teach me everything you do, so I know how to be a good Mom?”
“Someday, I’ll drive a big car like this ..”
My daughter Zoe has been telling me these things since the age of 6 or 7, when her ability to simply exhale and tell me what she was thinking , finally arrived. Her words, still slow with awkward stops and starts, were a gift I so desperately desired. The doctors had assured me the day would come, that even with Zoe’s neurological diagnosis and weak muscles, her speech though affected would someday improve.
I was sure that if I knew what Zoe was thinking, why she was crying, and the cause for every smile, her words would bring my heart peace. Erasing the nights she cried and couldn’t tell me where it hurt. The hours spent trying to recreate a smile, laugh or simple sigh of pleasure.
And then one day her words finally came. And oh, the very weight of them. The way her words linger , playing in my mind, over and over again. The way they overshadow my sleep, appearing in the dark of night as I return to bed after caring for Zoe.
A nurse ? Be a Mom? Drive a car? In that half awake state when dozing is meant to be delicious - I work myself into a state of anxiety, one word at a time.
Drive a car?
Epilepsy , I think.
I have always encouraged Zoe to try everything, to find her normal, and do things her way. She can recite our family mantra- “try your best, have fun , take your time and own the room” Own the room for Zoe means do it your way- with confidence. Like when Zoe ran relay at school field day in her wheelchair - carrying small water balloons in her lap and shrieking with the fun of it all. The way she dances in her walker, shimmying half circles and turns across our tile floor, or plays wii with her sister while she makes up her own moves.
Zoe oozes fun and laughter and we live every simple moment, splash in every puddle. And every time a teacher, or therapist sets a lofty goal for Zoe, she doesn’t stop until she has passed it.
Zoe will be twelve soon, and this past fall her big sister Olivia got a Rainbow Loom. It was a shaky start, even for Olivia who is quick with her hands, yet slow in patience. I sat with her, rewinding the YouTube Video and showing Olivia the basic pattern. Soon bracelets littered every surface of her desk and Zoe was custom ordering jewelry from her sister, watching Olivia loom her way through the weekends, yet never asking to try.
And there I was, vacuuming up mini rubber bands over and over again and never offering to try and teach Zoe. And then it was Christmas, and Zoe sat down with her metallic markers and made her Christmas list. There were only 5 things. Number one, her list began, RAINBOW LOOM written in sparkly gold.
“ Really Zoe? You want a Rainbow Loom?” I questioned, surprised that she had waited so long to ask. “ I want my own” Zoe confirmed. I tucked the list out of sight, yet once again, Zoe’s words lingered.
I kept picturing those tiny tiny knobs, the way you have to hold the loom just so to keep it still, the hook that catches the mini rubber bands and the way Olivia often snaps them off the loom sighing with resignation,that yet again, she would have to start over.
I read frequent Facebook status updates through the holiday season, from other Mom’ s lamenting about tiny colored rubber bands taking over the house, getting caught in the vacuum and covering bedroom floors and I thought ..”You don’t know how lucky you have it” as I worried. I watched Olivia fill hours and hours of her weekend designing holiday bracelets, and I was so grateful because she could, and so sad thinking how Zoe couldn’t.
And when Christmas came there was a big box filled with rubber bands and a Rainbow Loom under the tree for Zoe. It was the day after Christmas when Zoe asked to get started, I quickly checked out You Tube, prepared to custom make bracelets on demand for Zoe. Olivia taught us the basics, as Zoe watched each step. Zoe put her rubber bands on, slowly and sloppily. A rubber band would pop off, she put another one on, pushing it down, never losing her patience as she worked her chosen color pattern. I would finish the bracelet for her, after Zoe would each time, try to hook one or two herself. And then one afternoon while I was out shopping, Zoe made her own. From start to finish and supervised by her sister, it took about ten times longer than Olivia’s bracelets, but it was all her own effort.
It is a few days later and I am working in the kitchen, while Zoe sits nearby at the table. She has decided to make a Rainbow Loom lanyard for her school ID. This is the length equivalent of twenty bracelets- and I am a bit worried. She starts and starts again. A rubber band pops off, and she puts it back on. She gets stuck, calls for her sister for repair advice, and continues her own work. I notice she has her own method of fingers and hook working in unison.
The afternoon grows long. “ Are you okay Zoe?” I ask, as I watch her tired hands slightly tremble.
“Just fine” are the words that come from Zoe’s mouth.
“Someday I want to be a nurse” are the words I hear in my head.
Zoe’s lanyard grows long. It is the second afternoon at the kitchen table.
“Are you okay Zoe?” I ask. It is her eyes that look tired to me today.
“ This is fun, Mom. I am doing it my way, it’s relaxing” are the words that come from Zoe’s mouth.
“Will you teach me everything, so I know how to be a good mom?” are the words I hear in my head.
Zoe finishes her lanyard a few days later, and wears it to school the first day after winter break.
“ I made it myself” I hear her tell her friend.
“ Someday I’ll drive a big car like this ..” Are the words I hear in my head.
Later that day, I am alone in my car, the first time I say her words out loud.
Zoe wants to learn to be a Mom and help people someday.
I speak her words quietly, as if in prayer. By releasing her words, I allow her dreams to come to life. The memories of her early years come quickly- the diagnosis, the hospitals, all of the what if’s.. and as I turn the corner in our neighborhood, I catch sight of my pink and purple Rainbow Loom bracelet against the steering wheel, it is one of the first Zoe made. It stays on my right hand as a reminder not to underestimate my girl, and all she has taught us along the way…
That even when there are clouds in your horizon, you can can still find your very own rainbow.
When my husband and I were newly married, and our life with no kids- still streamlined and slow, we had plenty of time to dream about the family we would grow. It was the start of one holiday season, when the Sears Christmas Wish book arrived, that we got to talking about holiday traditions.
In his family, his Uncle dressed up as Santa Claus every Christmas Eve. With tears in his eyes and sometimes laughter, my husband told me story after story. How the children would squeal and the adults join in, as Santa hand pulled gift after gift , from his bag with a flourish, always a gift for each and every person present. These memories were magic for everyone. As the kids counted down to the anticipated arrival, the adults gathered to await his arrival, the clever gifts Santa would bring, and even the songs he would ask the children to sing.
And so that year we decided to purchase the Deluxe Santa Suit advertised in that very same Sears Christmas Wish Book. The professional quality fur lined red suit that came complete with Santa’s cap, spectacles, a hand bell,wig, mustache and beard, and everything we would need to make our very own family tradition.
And as our family grew, year after year, Santa always arrived on Christmas Eve. Our girls would sing and smile and sometimes Zoe would shake with nervousness.We could always hear him approaching , ringing his bell and cheerily calling " Ho, Ho, Ho" .
Santa came in from the backyard patio, through the french doors,he rang the front door bell and left sled tracks in our desert landscaped front yard. And as the girls grew older, they dearly hoped that " that" year Daddy would be home to see him.
Somehow, each year Daddy would miss Santa's arrival. He had to run out for milk, help the neighbor with his car, and run to the store for medicine, the year the girls were sick, and finally the final year both of our daughters believed, he came in the middle of the night. The girls found Santa sitting under the dim light of the tree, eating his cookies and milk , awaking the girls from their sleep with a hearty, " Ho Ho Ho. " And in their middle of the night delirious state, the girls stood watching him from the hallway oohing and ahhing at their good fortune to catch him in the act, smiling sleepily with happiness that Santa didn't miss their house after all- giggling and whispering quietly so they wouldn't wake their Daddy who was " asleep" down the hall.
My girls delighted in recanting these visits to Daddy, to their friends and other family. And every time the story was told they started with the juiciest fact of all- each time Santa came to visit he insisted on a kiss from Mommy. The girls, sure that this put them in Santa's good graces, would laugh and sing and insist that Mommy get to the important business of kissing Santa Claus under the mistletoe.
So this year , as Christmas draws near, Zoe, now a tween is asking .. " Will Santa still come this Christmas Eve? " But this year, different from all the rest, she looks at her Daddy for the answer to this question.
Zoe started middle school recently, and works closely with her classmates in a small but social, special education classroom environment . And so before Easter last year, to save Zoe from any potential embarrassment, I knew the time had come to talk truth about The Easter Bunny, The tooth fairy and with that I knew, the crashing reality that Mom & Dad are Santa too.
More specifically, that the guy singing Jingle Bells arriving every Christmas Eve in his fancy Santa suit, stuffed Santa belly,with his soft white beard and shiny black boots is actually her Daddy. Her Daddy that glows with excitement, to give his girls his holiday best each year. And that yeah, Mommy kissing Santa all these years really isn't as scandalous as it seems, because well.. I get to kiss Santa every day.
I went to my husband before the big talk to tell him it was time. Without missing a beat he looked me in the eye and said " That will break my heart.". Zoe's big sister had figured out the truth two summers before and spent hours sobbing, then quickly recovered when she realized it was her big sister responsibility to help keep the magic alive.
So one afternoon I sat down with Zoe. I began talking about what a big girl she has become, and how proud I am of her. She is so determined , independent and excited about middle school. I asked her if she was excited about Easter and what was her favorite part? She was quick to gush about the stuffed animals and Easter decorations, the sugar cookies we would make, but then she drew her breath, paused and said “ the best part about Holidays is spending time with my family.”
“ Holiday traditions are about family” I said, thankful for the lead-in. “ And when you are little, Mom & Dad help create traditions that are magical for kids, so that you experience the fun and excitement of the holiday. .” For simplicity sake, I left religion out of this conversation and went on “ So your parents, your Mom & Dad, make this magic, by pretending to be The Easter Bunny. “ No going back now I thought, seeing her mouth fall open in surprise. “ We pretend to “ be” the Easter Bunny, hiding the Easter eggs, filling your baskets and leaving them for you on Easter morning.”
At this point, she stopped me, slightly incredulous“ Really? You and Daddy?” She was surprised, but she was smiling, she looked... elated, even excited. No shock, no tears as I expected- just a huge smile. After I made sure she really did understand the magnitude of this, I went on to Christmas.
“ So”.. I said. “ Now that you know the Easter Bunny is really Mom & Dad.... What do you think about Santa Claus?” “ You” - she responded, pointing her finger at me. " We keep the story of St. Nick alive, I say" . I watch her process this, the changing emotions visible on her face. “ And Santa is..” she began, and pointed at Daddy, who was now close by, and I nodded.
We sat for just a moment, and then she was coming toward me, her arms clumsily wrapping around my shoulders as I pulled her the rest of the way into me.
“ Thank you, Thank you..she gushed,holding and hugging me tightly. " For being the Easter Bunny and Santa and for making our family time so special. I love my family” she said, out of words, sighing and .. smiling.
After, I sat alone. Thinking. I was so involved in my own perception of tradition- so afraid let go.. that I never imagined this.
And as always when I least expect it, Zoe says something that inspires me, that teaches me and she gives me just a glimpse of the young woman she is becoming.
I never imagined that she would thank me. That she would be the one to make sure our holiday magic remains, by reminding us of the true meaning of Christmas and how special our family time together will always be - even without Santa.
I sat down today with pen and paper, to reflect and record what I am truly thankful for this Thanksgiving. Most of my notes I email; notes to the teacher, quick questions to the doctor, reminders to my husband, even fun notes to my girls.
Maybe it is the absence of handwritten notes today that generates such emotion and contributes to the viral fame with notes of shame left on restaurant receipts, anonymous notes left in the neighbor's mailbox or on car windows. In honor of the holiday season, and in effort to spread some holiday cheer, here is my note of Thanksgiving.
All That I Am Thankful For Today:
For Wisdom: That I have finally accepted the value of taking care of me. That by dedicating time for soulful endeavors; my morning walk, cooking a fresh, healthy meal for myself, or even sitting in the sun to read a book- will make me stronger.
For Hope And The Inexact Science Of Medicine. What we know as the applied art of medicine today in practice and treatments, may be discarded tomorrow to make way for new thoughts and technologies. This gives me hope and also means that medical prognoses don't always come true. My daughter Zoe uses all the abnormally developed parts of her brain in the most amazing ways, to daily defy medical expectation.It also means that medicine can be whatever helps and heals- including the beliefs in your heart and the love you receive.
Somebody is smiling because she helped win a cake at the Harvest Festival cake walk! We made a great team and had fun.. like every holiday, celebrations are about what works for your family. Read my Halloween story about The Gift Of A Pumpkin, here at QueenLatifah.com, and my tips for how to find your own Halloween fun.
I had the pleasure of rubbing elbows with the Queen herself as she inspired the audience at the BlogHer convention this summer. Queen Latifah was emceeing the BlogHer Voice Of The Year celebration, and she did an amazing job honoring the readers at the event, and inspiring bloggers. As an honored Voice Of The Year, I was blown away. On stage, she is an amazing authentic mix of inspiring, uplifting fun! Check out the Halloween page on her show site, read my story and be sure to catch her live daily show soon..
“ I sit and listen to parents and grandparents describe the texture of their days as they sit next to their tiny babies, wiling them to be okay. I recognize the same look in the faces of mother after mother, the fear,-the not-knowing, the worry, the pure exhaustion.” - Ready For Air: A Journey Through Premature Motherhood by Kate Hopper.
This look Kate Hopper describes, I have worn many times. And so have the mothers I share space with- at hospitals, therapy appointments and doctor’s offices, women that like Kate, unexpectedly find they are dealing with their own illness, a premature birth and life in the NICU; a “ boot camp” that teaches parents how to behave, hope and how to survive, prepared and strong to parent children with significant medical issues and special needs.
Reading Kate’s story, I spent a weekend immersed; feeling her pain, her fear, and frustration. I was there in the hospital with her, focused on the monitors and hoping for her happy outcome while reliving my own experiences.
Like Kate, my world changed after a scheduled OB follow up when I was pregnant with my first daughter, Olivia. I entered the doctor’s office that day exhilarated, still in obsessive-like gushing love with my unborn baby and my honeymoon-like newly married life.
I left that appointment a mother, my hands shaking and protectively clutching the curve of my stomach, my heart stretched by truth and risks and fears with the doctor’s diagnosis of a dangerous complete placenta previa. Like Kate, my diagnosis forced me to slow down and to choose motherhood over my career.
It is bedtime, and my daughter Zoe, fresh from her bath, is heading to the kitchen table for her nightly medicine and dessert. She is tired, I can see in the way her legs move together, in a clumsy and uneven gait.
Step by step she makes her way, pulling her walker behind her. She moves forward to the promise of cookies and milk, humming her way down the hall.
Maybe it is the break in the hot Arizona weather, or the beauty of our backyard desert sky.. but something is calling to me. So I go to Zoe and take her hand, carefully leaning into her. She is shaky and tired and with tiny steps, I lead her.
I grab her covered cup of milk and a small bowl of cookies with my other hand and we make our way out the back door and to our bench on the patio. We sit facing the desert and just watch. above the shrubs the quail visit, the baby birds circling and tip-toeing the line of a nearby fence. The sky is a darkened, shadowed canvas with fading streaks of color left behind from the setting sun. I look up at my tiny twinkling white lights hanging above us. I strung them here recently, determined to take a moment in simple celebration each night, a reminder, to sit and breathe and just be.
Zoe’s bowl of cookies rests in my lap as she leans against me. Zoe chatters contentedly, .. but I have lost my place in the steady stream of her words. I am thinking again about the beauty of this moment and how lucky we are.
The other day, I found myself within earshot of a Mom with a young child. Near a field of grass, the child took off running. The Mom tagged behind, on the sidewalk along the field and after a moment, yelled to the child;
“ Stop running. Stop. Running. ” She yelled again, and again until finally, I wanted to yell too.
To this Mom... I wanted to yell ... let him run. LET HIM RUN.
Let him run for my little girl, who never has. Let him run, and smile, and run faster and faster until he falls and rolls in the soft green mounds until he is covered with grass, and sweat and laughter, because there are little girls like mine who will never run, who will never know what that feels like.
This perspective, this point of view, is a gift that mothers with special needs children live with.
We mother each day with our eyes wide open, not just marking the fatigue and the fevers and the falls that happen without warning, not just for these things, no. Our wide, open eyes also savor the sweetness in a smile and the simple joy that comes with laughter, we mother with a wisdom that simple actions and movement can take great effort, and therefore are a gift, not to be taken for granted.
Like any other Mom, I rush sometimes too. It was raining last week when I arrived at Zoe’s school, and as I helped her out of her wheelchair she placed one foot squarely in the closest puddle and followed with the other splashing in the rainwater. As I continued to lift her into the car, very softly she exclaimed “ that was fun..” and so instead of reaching for her seat belt as I had planned, in reverse I helped her back out of the car, until we stood to face each other, our feet planted in the same puddle, and with my hands on her shoulders steadying her balance, I told my girl to splash.
Splash, as long as you want.
Get as wet as you want, and as I watched her eyes shine and her smile spread, I was soon smiling and splashing too.
This patience, this perspective, even my point of view didn’t come naturally. It has grown with time, with each new diagnosis, with setbacks, and with each new achievement.
Yesterday, on our way to school I chatted casually with Zoe’s big sister Olivia, as we sat in the car waiting at the neighborhood light. There is a school bus stop at that corner, and the car in front of us was lingering, holding up the cars behind. “ Ughhh,” Olivia complained grumpily. “ Why can’t the kid just jump out and go already” . Slowly, the passenger car door opened and a teen emerged, as he warily eased out of the car, finally standing so we could see he was wearing over-sized glasses and carrying a long, white-tipped cane. Olivia looked at me, slumping in her seat, as the harsh, powerful meaning of her words sunk in.
I watched Olivia in that moment, her eyes closed as she murmured an apology to herself. I thought about the life Olivia lives as Zoe’s big sister. How she helps to care for Zoe, this big sister, who every day sees muscle weakness, physical challenges,... and who lives it too. and for a moment in her rush to hurry, hurry, hurry forgot that sometimes things are not as they seem.
I reached for Olivia’s hand then. “ It has taken me over ten years, ten years of mothering Zoe, to open my eyes and understand there is more to every person than what we can see, to learn to slow down and be patient”.
Together, Olivia and I watched the teen slowly step up onto the last curb and walk over to a group of teens. I looked at Olivia and she looked at me, and I know we were both thinking about Zoe. She saw her sister, in that teen, in that moment. She thought about how her own words, just spoken, betrayed what she thought she already understood.
And like that young child running fast on the grass, I thought of Zoe, and how I stopped rushing that afternoon in the rain, how my hands steadied her shoulders and the way Zoe stood, splashing, up and down in the puddles and how in the end, we were wet and muddy. And I am grateful that we took the time.. because she could.
I know I’m not alone. I get smiles in solidarity, hear the groans at the local Starbucks, and share the frazzled Mom look of yoga pants, messy hair and tired eyes. It’s called back to school shock. While some Moms are dancing in their driveways, Mom’s like me are charting lists, emailing teachers, staying up late to prep and rising early, just to guzzle down some coffee before the stressful start of the school morning begins.
Our kids struggle with back to school-from getting out the door in the morning to falling asleep at night - and often every school oriented transition that falls in between.
“ Sensory” kids see the world through a different lens, and even small things can be stress points. Sensory kids are sometimes rigid, anxious or distracted kids, characteristics that are not exclusive to the diagnoses of Sensory Processing Disorder, ADHD, Austism Spectrum, Anxiety Disorder or a host of other diagnoses that often have a sensory component.
When my daughter Zoe was in Kindergarten, I could see the physical exhaustion in her face as I helped her in the house each day after school. Guiding her to the cool, quiet and calming environment of her bedroom, straight from the car, instinctively seemed the best thing to do. First thing after school Zoe lays down to watch a quiet dvd. Only in the last year, when she started fifth grade, was Zoe able to describe the rush and noisy end to her school day that contributes to her fatigue and after school headaches.
The commonly chaotic, family school morning rush can cause my middle school age daughter Olivia, problematic increased anxiety. Through trial and error I have found that the more quiet and less rushed school mornings are, the less anxiety she experiences, and the more confident she feels.
Before mothering a special needs child, I gave little thought to sensory input and how it affects each of us. We all have sensory triggers- factors that influence our mood, ability to be productive, even our ability to relax. One example , is the mood lifting transformation that comes over me when I enter a Starbucks. It’s the colors on the wall, the piped in music, the smell of coffee, the stacks of newspapers .. it’s oddly soothing and invigorating at the same time. When Zoe was little , her pediatrician came in to greet us by explaining he had a headache from the newly painted walls in the exam room. It was the bright colors, he explained. There were 4 different primary colors competing for and stimulating his vision simultaneously. He was miserable, and a week later, the offices were repainted in a bright, cheerful toned down color scheme.
When our kids are older, it may be easier to put the pieces of this puzzle together. We have time spent in trial and error, verbal cues, the help of professionals, but what happens if it’s all new to you? What happens if the back to school transitions just aren’t working? If you are desperate to find new solutions and systems that work?
As Mom’s we understand the concept that different children thrive in different school environments-but what about at home? Have you considered how your child will succeed best in the home environment? Carolyn Dalgliesh has written an extensive how-to guide tackling this tough subject; “ The Sensory Child Gets Organized” Proven Systems for Rigid, Anxious, or Distracted Kids “ is a top-to- bottom, complete life guide on living successfully with your sensory child that features these 6 tips you can use to start your school year off right:
6 Back To School Tips For A Smooth Start
- Learn to Speak Your Children’s Language. Consider your child’s strengths, social and emotional development and triggers. Create a sensory profile determining how your child learns best so you can create an approach for an organized environment that will be unique and successful for your child.
- Make Troubled Times Easy: A school schedule gives us less flexibility for some of the basics moms manage in every day life. Try using the support strategy of power of choice, letting your child choose-shower or bath. Another support strategy would be using letting your child engage in their “fascination” to help them accomplish a task. In our house, Zoe often brings a small toy to the dinner table. It doesn’t prevent her from eating her meal, just allows her to engage in a different way-sharing it with us, or even talking about it during the dinner conversation.
- Manage The Morning Rush a) Break Down Tasks - by sequence and time b) Eliminate External and Internal Stimuli and c) Create A Visual Aid For Support- ie, list
- Keep It Together And Make It Portable: Create a homework bin for kids, holding all their homework stuff for a portable station.
- Create A Place For After-School Activity Schedules. Have your kids highlight their own activities to make a visual pattern that makes sense to them.
- Savor The Sweetness of Bedtime: OK, this is my Mom tip, not one from Carolyn’s awesome, empowering how-to rock at mothering sensory style book. My tip is to take the time at bedtime to compliment your kids ( and yourself) on what went right that day, reinforcing that tomorrow is a new day. Hug your kids, love your kids and then ready what you can the night before the morning madness comes again!
Vist Carolyn's website to learn more about purchasing this book. It is a must read to add to your library. I have a couple of extra copies, thanks to the author- so if you work with special needs families and think this would be an asset to your library and make a difference please email me.
More On The Anonymous Note.. As I mentioned in the HuffPost Live interview, and to all news sources that have since inquired, I originally received the anonymous note on my car awhile ago, and at that time originally published the personal blog post that was republished this week by HP and continued to go viral. I believe the recent web interest here on my blog for this post, may have been a result of the news popularity of recent anonymous notes to parents of a disabled children, also being published. That said, readers seem to feel the content and conversation was still relevant. You can click the link above for the HP Post, HP Live video and the 7K+ comments. To further clarify my personal perspective I have written the post featured below.
“ How did I get the line on my leg Mommy?”
Zoe asked me about her scar last night, as I lay next to her, mostly murmuring that she should go to sleep.. while I tried especially hard not to nod off. Kids are funny at bedtime, vulnerable to the mysterious truth serum spell of near sleep, and Zoe is no different. This is a new place we have arrived at, the magic of bedtime, when affection is still abundant, but now her worries and fears are also at the forefront of thought.
I rolled over and took Zoe’s hand in mine, trying to focus on her face in the nightlight glow. She is eleven now and bedtime lately has taken a serious turn. We talk about kids who stare, what she is afraid of and how people are different. Tonight she has chosen to ask me for the first time ever, about the surgical scar on her thigh. My mind drifts, and I speak softly, saying one thing to her while thinking another. Buying time to choose my words carefully, and tell her this story.
Every time I see that scar, I am thankful. Thankful we had the diagnostic muscle biopsy test. Thankful we finally got the answers were were looking for back then. The funny thing is though, I haven’t really seen that scar for years.. When I look at Zoe, I don’t see her scars, the label of her diagnosis, her walker she uses at home or her wheelchair she uses out in public. I see my daughter; her can-do attitude, her awesome sense of humor, her smile, her spirit. I see how far she has come and how hard we have worked to get here.
My first post for Scary Mommy is a true story about the normalcy I wanted on a sunny day at the park with my kids. Instead it turned into something else. The most interesting thing about sharing this story on Scary Mommy, was the feedback and suggestion that maybe I was being a bit judgemental and displaying preconceived notions of my own. This is just another example of how being vulnerable, makes you grow, think and think a little more.
The story starts like this..
The Golden Hair Girl In The Princess Tower
I have always been the nice mom in the neighborhood, comforting the upset kid waiting alone at school pickup, worrying about the preschooler cruising the grocery store aisle, until yesterday, when I told the golden haired little girl at the park to go away. It was a warm beautiful day, and I was intent on making some memories. Head on over here to read the rest.. please comment, tweet and share the love while you are there...
After a summer of constant mothering and all things tween girls; ice cream cones and boy crush movies, neon nail polish and icy cold lemonade, afternoon swim sessions with late summer night secrets..seeing my girls go back to school again has left me feeling out of sync.
As much as I want to expand into the quiet empty space, claim it as mine, and finally clear my never ending list of things to do, there is something about that first day of school, that tugs at my mother’s heart.
Today was my daughter Zoe’s start to middle school and at 6 am I stood nervously surveying her pile of stuff stacked on the kitchen table. After only a single cup of coffee, I was working extra hard to concentrate, double checking my mental list from the school year before. There was a super full backpack, an extra water bottle, extra snacks, purse with toiletries, extra cold wipes for relief from the Arizona heat, medicine and Ipad, and the power wheelchair was charged and ready for loading. Check, check and check.
I don’t know which love is greater, the love I share with my husband, or the love I have for my children. More than intertwined, they are deeply tangled. To try and choose, would require unraveling their knots of time, and pulling them apart would cause too much pain.
Both of these loves began with worry. Early on love's seed was barely planted, still loose beneath the soil. I should have been nurturing it's newness but instead raced ahead. I was worried about what loss would feel like, before love even had time to take root, grow and blossom.
The story of my husband and I began with a dance. Something moved in me that moment when he took me in his arms. We danced the way my parents did, after spending half their lives together. And like my parents, my husband and I are both tall, yet still somehow I felt small and light within his arms, as if we were floating across that room.
Note: Guy Kawasaki dared me to do this. I couldn’t resist.
At the BlogHer 2013 Conversation Keynote with Guy Kawasaki and BlogHer Cofounder Elisa Camahort Page, Guy shared this tantalizing secret to his social media success "...The secret to my success on social media is a woman named Peg Fitzpatrick, .. what she does is she takes my Google plus stuff and looks at what else is interesting, and she, shall I say, enhances me. And so now you know that behind every successful man on social media, is probably an amazing woman. So that is Peg Fitzpatrick. And one more thing. Don't you dare freaking try to steal her from me. I will make it my life goal to bury you if you try to steal her from me. She does not have email. She does not have a cell phone. There's no way to get in touch with her"
Who could resist such a dare?
Talking With The Pioneer Woman at BlogHer'13: On Being Blogger, Writer, Mother... and Siblings With Special Needs
Saturday mornings at my house start with delicious sleepiness. Not to be confused with actual sleep, this is simply the act of allowing myself a slow Saturday start, being awake and sleepy and not feeling the pressure to be productive. After my coffee, cruising the news on my Ipad, and feeding the kids breakfast, I reach for the remote for some Ree Drummond time.
Just like her books and blog, it is the celebration of her lifestyle and the beautiful images that I find so relaxing.Ree opens each Pioneer Woman, Food Network show reminding us of her roots, introducing herself “ I am a Writer, Blogger, Photographer and Mother”, and that is who I connect with, this same woman who welcomed bloggers at the Kickoff Keynote at BlogHer’ 2013.
It happens each day, all around the world. Science can fail to forecast it, doctors can’t always diagnose it, parents can never be prepared for it, and even the best social etiquette experts are unsure how to celebrate it; another child is being born, and sometimes unexpectedly, born with special needs.
These new parents will still honeymoon with their baby, experiencing the intimacies of caring for a newborn, and settling in. The problem is the honeymoon won’t last long enough, the mother’s celebration, the elation shared between husband and wife will be cut short, a honeymoon with a sprinkling of heartache, as William & Kate each said “ It is an emotional time”.
Elation is overshadowed by worry, the fight for your child’s life begins. You may grieve in private, yet celebrate in public. Happiness, for the day of your baby’s birth is here, and fear, so much fear..that the fragile life of your child could be taken away.
Seth Godin tells a great story, the kind of story that changes the way you see the world around you. In this classic post, Godin blogs about how author Amanda Hocking made a million dollars a year publishing her own work because she chose to “ pick herself.”
“ Pick Yourself” Godin recommends. “ It’s cultural instinct to wait to get picked, to seek out the permission and authority that comes from a publisher, talk show host, or blogger saying “ I pick you.” Once you reject that, you can actually get to work.”
Before I was a blogger, ( and a Mom) I was a magazine publisher, and spent several years traveling to trade shows and conferences, meeting new people and learning new markets . Even with my experience, deciding to attend my first blogging event, BlogHer 2013, left me feeling a little nervous.
When we found out that I was chosen as a 2013 BlogHer Voice Of The Year Honoree.. my very cool husband insisted I attend the conference. It took awhile for the plan to sink in.. but it all worked out. A red eye flight from Phx to Chicago, and I would arrive in time to spend all day Friday and fly home Saturday.
Of course, the girl in me got thinking.. " What am I going to wear? " For years and years, my world was all about trade shows, conferences and convention centers, so it was kinda cool to think about the fact that who I am today, no longer requires a suit and leather briefcase. Today, I am much more casual and comfortable with myself. Happy in clothes that are soft, feminine and sometimes.. meaningful. For Christmas, I got some cool gifts from my favorite store.. Anthropologie.
It’s Saturday afternoon and lingering in the background of my day is the reminder that tomorrow is Sunday, and so my thoughts keep coming back to God.
Not my God who confuses and comforts me, not your God, whom you may believe is the only God, my mind returns to my daughter Zoe’s God, the one who made her the way she is, with her unshakable spirit yet too-shaky muscles, with her abundant full-of-love, happy heart that lives in a body that is fragile and weak. Zoe is 11 years old now, and is finally finding her faith in an unexpected place.
Before I was a Mom, I once spent a fabulous vacation with Martha Stewart. An entire week cooking, crafting and fussing around my new house, just me & Martha. I followed bookmarked pages from Martha ‘s magazine and splurged on Martha's new appetizer cookbook. It was a DIY week of domestic goodness culminating with a baby shower I would host for a dear friend.On the day of the shower, I filled pitchers with Martha's sparkling spritzer punch and spent the afternoon stuffing tiny green grapes with herb seasoned goat cheese. My husband, who offered to clean up the demolished kitchen, was hovering nearby anxiously checking his watch. My memory of what happened next is fuzzy, but looking back we both agree that I was running late, too anxious and approaching " it's-gotta-be-perfect-like-Martha" freak-out full hysteria. I was projecting my panic when he took the patio hose he was using to fill the mop bucket and aimed it right at me. I ended up very wet and kinda pissed, but my mood was much more manageable.
After my daughter Zoe was diagnosed, I would find myself in the middle of the night at my bookcase searching for the right book. I had filled more than two shelves, overflowing with books about understanding the special needs child. Books about epilepsy, sensory disorders, inclusive education, cognitive issues, and in a way.. all of these books were helpful. Reading all of these books taught me to parent with more confidence. Yet none of these books helped me to feel less afraid, or less lonely, because these books weren’t every day, real stories, about simple moments of parenting a special needs child.
I wanted to feel encouraged and needed to be understood. I was feeling left out in my social circle of typical moms and craving the common bond- of knowing another Mom like me, living a similar life.
Women everywhere have always talked about motherhood and connected with a common bond; in the produce aisle at the grocery store, in the waiting room at the pediatrician’s office, the hair salon, and thanks to blogs and online communities.. on our laptops and Ipads. We are experiencing moments of affirmation, understanding, even comfort if that is what we seek and it’s happening when we share our stories.
I couldn't help but write you this letter, and I hope that's okay. I have so much to thank you for, first for being Zoe's ' buddy" at summer camp.There is more I want to share with you too. My hope is that you will tuck this letter away and read it again at different times in your life.
I hope it will help you make sense of your world, maybe inspire or comfort you when words like these are what your heart needs.
I am so happy to be home with my girls this summer, still working.. still writing, and as always stymied as to how to be more exciting than their Ipads! To keep us busy, and creative- savoring the simple things of summer I am writing about some of our fun times, weekly at this gorgeous, cool website Moonfrye.com.
I am happy to be there, having some fun! You can find me here. Hope you have a chance to drop by.
Acceptance, Open your eyes. I want others to accept my child for who she is, to look close and see her goodness. At first glance you might miss her amazing sense of humor, the way she can make you laugh or the positive light she radiates, and really.. that is your loss. My child greets everyone she sees with “Hello” , and tells each person she meets, store clerks included, goodbye.She has taught me how meaningful this simple gesture is-because what she is really saying is.. “ I see you. “ Zoe knows that when people look at her, they first often see her “ equipment”. She has accepted that kids stare (a lot) - but seeing the person behind the wheelchair is important. Acceptance starts with a simple and meaningful “ hello”.
It's Summer, and I am thankful to be slowing down a bit, yet still trying to accomplish more. My husband and I have always been big fans of fresh herbs for flavor and healthy eating, years ago after Zoe was diagnosed with a significant vision problem I started researching sensory gardens. Ever since, I have nurtured a couple herb gardens at home. It is easy and a great sensory experience for the whole family. Savor the simple things this summer ! You can read more about it here.
“ I like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff, how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.
I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.
I held my first daughter tight against my breast as I watched the Twin Tower tragedy unfold on television. Tears dripping onto the soft red curls on her infant head, she slept soundly, as I held her tighter and tighter, believing this would keep her safe from the terror at hand. Innocently she slept, unaware of my growing grief, only awakened by the fear in my voice , as I phoned my husband, describing minute by minute, the unimaginable images.
It was the terror that every one talked about that week. The true stories of the heroes, took weeks, months and even years to be told. News events were still reported then, in the paper, on tv and online , at the time of 9-11, social stories were not “ shared.”
Thanks to HuffPost Parents, AOL Lifestyle, Yahoo Parenting, and all of the other awesome places this has been shared 500k+ times!
- Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn’t leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It’s that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don’t have much time to call or email my friends and even family...and if they don’t call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day’s when I had playgroups with other Mom’s, open-house style, dropping in and drinking coffee at a friends’ kitchen table with my child playing nearby.
- Special Needs Moms have to work extra hard to preserve their marriage. This goes with counter-balancing the high stress of special needs parenting and directly combats the sky-high divorce rates for special needs families. I put extra pressure on my husband, he is my best friend and sometimes I expect unrealistic BFF behavior from him at the end of the day( see #1). He is my hero,supportive, patient and loving- and my kids would be totally lost without him. The success of our marriage, will affect the health of our children. My husband and I haven’t spent a night away from our kids for six years, we “ date night” out of the house every few months, for a two-hour sushi date. Our marriage is a priority so we “ steal” our moments when we can.
In our home, traditions are all about family- and designed with creativity and flexibility.
Like last Easter, when I decided that Zoe’s excitement over her soon to be arriving Easter basket coupled with her fear that the “ Easter Bunny would be in our house” wasn’t worth a sleepless, stress filled night. So the Easter “ baskets” arrived after dark, with a “ glowing” Easter egg hunt beginning on the backyard patio. ( Yes, I bought into the Pinterest rage of glow-stick Easter eggs and you know what? It rocked) When you spend a lot of time at home, these family fun traditions are important.
And this year, as Easter draws near,Zoe is excited again. This time hoping her Easter basket includes not the wholesome Beach Barbies the bunny brings each year, but instead a goulish pink haired Monster High doll in roller skates. I was grieving the loss of Beach Barbie, thinking about how Zoe is growing up, when suddenly it occurred to me that I had missed something I don’t usually miss.
When my daughter Zoe was little, I looked to the doctors to forecast her future. After all , they had the clinical experience from thousands of patients , and I was the first-time parent of a special needs child. I would cover Zoe’s baby face with kisses, all the while wondering, “ Will her words ever come?” Will she ever walk? The doctors were uncertain.
As Zoe grew older, she missed “ milestones” , yet amazed us with her tenacious achievements. We learned to embrace her uniqueness,and I found peace with the fact that as her Mother, I knew her the best.
I am fiercely passionate about what happens in my home, and the family life we make. My mothering, my marriage- the relationship we have with our children , how they feel our love, and the connection we share. I am not aiming for perfection, and it has nothing to do with Zoe’s special needs and acceptance. It is all about belonging, I want my kids to know that family is a place where they belong. I am adopted.
I am an adoptee, I have searched for and found my birthparents. I was lucky enough to unravel the truth behind the false birth certificate I grew up with. All of my original records remain closed,( for now in the state of Ohio ) yet still I was able to first find my birthmother, who told me the story of my “ famous” father. I was able to reunite with my birthparents and find that part of “me”. I was even fortunate enough to co-present with my birthfather, the keynote address at The 30th Annual American Adoption Congress , Adoption Network National Convention.
My girls are twenty months apart. " O" the big sister, is almost a teen- she wears wedge flip-flops, designs elaborate doodle drawings and can master most online games; All enviable accomplishments to her little sister, Zoe, who does her best to follow in her sister's footsteps. Where " O" can run , Zoe uses her walker. When the girls do "" Just Dance 4" on the Wii, Zoe has some pretty mean moves that are meant to model the spins and bounces her sister effortlessly exerts. The girls share the same medical diagnosis, however in our house, O is the " typical " kid ,and my expectations for her are great, maybe maybe even sometimes..unrealistic.
Olivia was about 8, when we started talking in detail about Zoe's diagnosis. It was then that I realized through O's little girl eyes, that she was expecting Zoe to get better. The medicines, the therapy appointments, even doctor's visits.. were all meant to make Zoe better, help her learn to walk and speak clearly. O was just waiting for it to happen, and waiting and waiting, until one day when she asked me if it ever would. And I told O what I knew to be our truth,. I watched her eyes fill with tears and waited for her words of grief, and instead heard her little girl voice ask" Does Zoe know, Mom?" She was protective of her little sister, trying to imagine if Zoe knew this, if Zoe, with her great love for life and easy laugh, knew this to be her future or if there was more hurt to come.
A few days ago I posted on " Taking Care of YOU" and how I finally found my fitness start after 10 plus years of waking through the night with Zoe, gaining a few pounds a year, and feeling pretty unhealthy. The response has been very cool! So here is the scoop for those of you who asked!
Living the life of a special needs mom, organized classes, gym visits, and bootcamps just won't work. I needed to focus on me, and pretty much do it on my own. I started researching first, and after talking to a friend I started with Weight Watchers online. It was an awesome introduction that helped me start losing weight right away. The online tools, recipes, apps ( bar code food label scanners, trackers and more!) were awesome, and the content on the website was plentiful. Inspiring, interesting and helpful tips and tricks to get started.
Here is where I was coming from..I needed to slow down.
When Zoe was little I spent a lot of time thinking ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.
Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.
I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways.
I never imagined Zoe as the 'tween she has become. She talks alot now about growing up , and asks those difficult questions that make me feel old and sometimes sad. The last ten years have flown by, but when I look in the mirror I can see every moment. The way my life evolved from a master plan to just getting through each day.. learning to shift my life from " black and white" to an okay shade of gray. The way there is little time for anything besides family, home and work.
Things have been kinda calm lately, and after a whirlwind of working non-stop for the last year,parenting my girls ,ten plus years of not sleeping through the night, and long talks with my husband with his repeated reminders to " slow down" , I kinda had a revelation. Something has to give.
Well, technically the question in the packet of papers read “ What frustrates you most about your child?” The questions were typically brief and non-descript and this was the only question that made me pause, put down my pen and sigh. There was less than one line to complete my answer, not anywhere near enough enough space to tell my daughter’s story.
It was laughable really, that someone would ask such an open ended question that sounded so insensitive, at least to a Mom like me. The packet was specifically written for parents of kids with special needs, the question and answer process designed to know my child better.. but frustrates? Typically, when my kid misbehaves there is a “wiring” issue involved in the behavior.. processing, impulsivity, fatigue etc. There is nothing about my daughter Zoe that “ frustrates” me, as in.. “ gets on my nerves, drives me crazy, or really *#**#$* with my day.,..yet really... now that you ask.. almost EVERYTHING about Zoe FRUSTRATES me.
Zoe is ten now, TEN. Once upon a time , we weren’t even sure she would live this long. That’s what it’s like when you have a young sick child, diagnosed with mitochondrial disease.
I have been reading about mitochondrial disease all week, and thinking about how rarely we speak of it now. How we had to move on with our life and had to start living it. How time can change things.
Our questions about Zoe’s future were impossible to answer, and the only clinical estimate Zoe’s Doctor offered was “ The earlier the onset of the disease, and the more organ systems involved, the more severe the progression.” Zoe was almost 3, and we knew mitochondrial disease was affecting her brain, her muscles, her eyes and kidneys." This wasn't hopeful news.
Although Zoe’s diagnosis was not as severe as some, like this family’s story just published by CNN, the plan was the same- take your medicine, and take care- do whatever you can to avoid illness and fatigue and we’ll see what the future brings.
It has been a long ten years- and by looking at this picture, you wouldn’t know that. You can’t see the power wheelchair Zoe needs to move through large areas like school , or her push chair that we used on the day this picture was taken. You can’t see the walker she needs to stand unassisted or move through our home. You can’t see how her every moment, each step, each activity in her life has been adapted for her success and independence.
It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I - as I ask him question after question- all of them starting with “ Will she ever..? And in that moment, instead of feeling tragically overwhelmed- I was empowered.
Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.
Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and learning new methods for tackling daily life and Zoe’s physical and medical challenges. Zoe is 10 now , and continues to give her all to everything she does. She approaches becoming a “ tween “ no differently, reaching for more freedom, becoming frustrated at times that she can’t enjoy certain privileges her “ almost teen” sister earns.