How Motherhood Changes The Texture Of Our Lives


“ 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.

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Back To School.. 6 Tips For Your Sensory Child

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 

  1. 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. 
  2. 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. 
  3. 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
  4. Keep It Together And Make It Portable: Create a homework bin for kids, holding all their homework stuff for a portable station. 
  5. 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. 
  6. 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! 


  1. Book

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.

Honeymoon Summer

“ 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.

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Don't Sweat the Small Stuff - " Change it Up!"

LavenderI don’t sleep through the night. A good night means I am up only twice. My day starts at 5 and ends by 10, and the mothering I do all day is a physical, eyes and hands-on type that Moms’ of toddlers can most identify with.  I am the mom of a girl with special needs, and I have been blessed with the gift of perspective.

It is an awesome gift I have earned. When you hold your child throughout painful or difficult medical procedures one day, and the next she wants a chocolate brownie or to wear her princess tutu to the grocery store.. it’s a no brainer. It’s perspective. 

When the bedroom floor is strewn with toys at bedtime, but the sound of laughter still lingers from her afternoon of play, it’s the gift of perspective that allows you to push the mess aside and climb in - to give your girl a goodnight hug, grateful for a good day.

Managing stress is always an issue from me, managing work, home, marriage and mothering. Years ago, I picked up the first edition of “ Don’t Sweat the Small Stuff For Mom’s” and was moved by the poignant, short common sense chapters. I especially needed support with the accepting that I cannot do everything, taking care of myself was mandatory, and sometimes just surrendering was okay. 

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The Value in Life


“The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”  -excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son  that first stopped me. We have all imagined the future of “ what if’s?” managing care for our children when symptoms worsen or a disease progresses. So these detailed diaries of Brown caring for his son Walker, did not disturb me. Instead I found the idea- “ What is the value of my child’s life?” inspiring.

As parents we set out to do the best we can for our kids. We take each challenge in stride, try to make the best decision, take the best approach, give our kids the best advantage. We watch how their  talents develop, we nurture, guide, help them grow, so that they contribute, feel valued and posses a strong sense of self esteem. 

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The Soul of A Special Needs Mom

It's late, so the house is quiet and the lights are low. My box of kleenex is now empty. I hit the remote to turn off the tv and head first to O's room . And instead of quieting my craving to climb in bed and gather my first born's body in my arms, I instead bend down brushing my lips over the tip of her nose , and then close to her ear whispering.. promises. I love you's. More promises. I move next to Zoe's room, her cheeks are flushed yet she sleeps peacefully. First I gently kiss her forehead, and then each cheek. Finally her lips.There are no words for her. Just questions, questions I keep silently repeating. Am I doing my best? Making the right choices? Making memories? Teaching my daughters enough? Loving and Laughing enough? And the loudest question that is buried the deepest in my mothers soul -now is pounding in my head.." Will I have any regrets?"

I had just finished watching the movie Extraordinary Measures. Through mostly tear filled eyes. A lot of the drama for me was the imagery , the kids in power wheelchairs, the machinery, the illness, the fear, the desperation that was ever present. The emotional and open soul of a special needs mom.

The remarkable true story details a father's fight, and race against time, to not just find a cure, but to make the medicine that will save his children's life. Not a new story- and I had already read both books, mostly because I stumbled on them in my local library and I happen to read a lot. First I read " The Cure" written by Pulitzer Prize winning journalist Geeta Anand , the non fiction life account on which the screenplay is based- and then I read John Crowley's personal perspective " Chasing Miracles" .

Sleepy, yet unable to surrender, I lay in bed  last night, thankful for the comforting warmth of my husband beside me, thinking... " Am I fighting hard enough? "

I fought hard for the answers and the eventual diagnosis. I pushed and pushed-first fighting for Zoe and then for O. But with a metabolic disease, there is a certain amount you have to accept. With their illness, it is the mitochondria that is damaged all throughout their body. It is on a cellular level that cannot be re-engineered, at least.. not yet.

 It is morning now, the next day- and still I am moved and distracted by the difficult answers to all of these questions. I know am trying my best to make the most of everyday with my daughters. I am their best advocate. I support the cause and believe in the future of medicine and scientific advancement- but what is most important to me now is living like a typical family, I know this is best for the health of my kids today - even though fighting the hardest fight might be best for their future of tomorrows.

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Truth and Beauty

When Zoe was little, each moment of truth was stunning. She will never walk by herself. She won't run in the grass, walk in the sand, or recklessly dance her way across the room. These moments have continued as she grows older. Drive a car. Have a child. Grow old.

 I grieve these truths and then move on, trying to live so typically that sometimes I can forget for a long, long while. Until now, now that Zoe, and her big sister, are coming to know these truths- and understanding them enough to shed their own tears.

 Zoe is 8 now, and loves to sing and dance- read about Ramona, and is smart, especially in that " when you least expect it" kind of way. Zoe's big sister is almost ten, and I have spent these years teaching them that they can do anything,that everyone is beautiful in their own way, that they are just like everyone else. For Zoe especially, she believes this to be true- and only recently has she started to see how truly different she really is.

During a recent bedroom dance session, I caught some of her awesome moves on video. She grabbed my iphone the other day and began playing the clip. She was stunned. " Mom, I looked horrible ( one of her favorite dramatic declarations.. horrrrrrrible!) I thought I danced better than that she said- and then she sat .. silent for a few minutes. And then just yesterday, we were talking about her book report presentation, nearly a month away.. and in the midst of all of her objections, was that truth that came before the tears... " I can't speak like the other kids."

And yes, I know how to fix these things. We will practice, and practice and adapt. The awesome team at school will help her practice too, and her confidence will grow. I know it will be another accomplishment for her.. until the next truth comes. And is that what comes along as your special needs child grows older- teaching them these truths?

I get emails sometimes from other moms in the special needs communities. Asking about what I deal with or how. Have I ever experienced this or that.?. and the answer is most always yes. I just can't share that. The grittiest ugliest stuff, the seizures, the stroke, the sicknesses- to me the details are private, and to my husband and others who love them - It is painful too. And sometimes, there are no words. I try to protect my daughters when they are at their worst, I want to care for them, heal them the best I can and we just hunker down until the storm has passed.

The start of this school year has brought many of these reminders, the adaptions, the schedules, the fear of the fast spreading school germs that can knock the girls down in a moments notice. I have been scheduling the MRI's, The EEG's, evaluations, updates and labs. Soon it will settle down, and I will slip into the school routine again. And I look forward to moving on , keeping the painful moments private and living so typically that I can forget for a while , until the tears come again.

Making the most of it..

“ Sometimes I feel sad, when I pray for Zoe, I pray that she can do more things”-  

Olivia wrote this recently as part of a homework assignment. She will be 9 soon, and is beginning to realize there are many things that Zoe may never do..walk unassisted, ride a bike, a scooter. We have a diagnosis that Zoe will continue to lose her vision, leading to a complete vision loss. And although Zoe is learning Braille now, we don’t dwell on that eventuality.

I never knew that Olivia believed  Zoe would   develop these abilities in time. Zoe is 7 now, and it never occurred to me that Olivia was waiting for these things to happen. And to her Zoe is just Zoe. But it makes sense, kids watch kids grow up and watch them gain skills as they get older. And that’s what kids remember, how they have grown and accomplished more with each year of their life.

When I explained to Olivia, that helping Zoe “ practice” walking, may not change anything she had this look on her face that said “ How do you act so normal Mom?, how can you say that so easily – that she won’t walk by herself, ever?”

We talked about Zoe’s decreased muscle strength; how she can’t balance- stand unassisted for more than a couple minutes. I didn’t say that Zoe’s body doesn’t make the energy her muscles need, her brain needs, her eyes need, her kidneys need- all the things affected by mitochondrial disease. I didn’t go there because Olivia knows now, that her body doesn’t make energy correctly either, and we are trying to teach her to remember to eat and drink and rest when needed-as her body tires. What I don’t think Olivia understands fully, even though she is so smart, even though she and her sister share the same kidney medicine- is that she has the same deficiency. She was just luckier.

I am sure that conversation will come someday. I have it with strangers sometimes – someone asked me recently if the disease was progressive. Yes. And both girls have it?Yes. This woman gave me the same look Olivia did. Kind of a shocked look as if she was thinking… well how can you just stand there? How did you get dressed this morning? Put on make up?  How can you stand there smiling so calmly?  What about Olivia- she looks okay right now...

What I wanted to say was- yes I get dressed each day, and the reason I am wearing this bright pink t-shirt today is because it makes me happy, even thought it’s not trendy or in style.  And these are my favorite jeans, the most comfortable for loading the wheelchair, lifting Zoe, carrying the walker- running around throughout my day. And my makeup-well it’s not hiding much, not the tiredness or the lines, around my eyes now, , but that’s okay -. And I pray more now- for strength, for happiness, for peace and that’s what  keeps me calm. As mothers we make a choice each day, and it affects the whole family. I choose to make the most of today , whatever it may hold.