Her father and I were sitting close together in the school auditorium last night. Zoe stood between us , an arm around Daddy’s neck and an arm around mine.Cheek to cheek, we watched her big sister on stage singing songs with her preschool class. I couldn’t tell where Zoe’s smile began and where it ended. It swallowed her entire face.

Minutes later, I saw a mother sitting behind us studying Zoe’s face. Was she noting  the differences in Zoe's behavior, her awkward sounds and clumsy movements? Or was she envious of Zoe's obvious outpouring of love and affection , her display of raw pleasure?

She is happy, and affectionate. She greets scowling old ladies at the grocery store with a sing-song “ hi” and a folded-hand wave that  she accomplishes slowly.

When curious children approach her and begin examining her walker, Zoe looks to them eagerly, as if to ask ““ Do you want to be my friend?” She smiles adoringly into their sometimes tired, grumpy preschooler faces.

On some days it is Zoe’s special store of happiness that keeps me going. The days that may follow a night of little sleep, the days full of therapy evaluations , doctor appointments and unfinished work waiting in my office.

Her happiness is without limits and you can’t help but be drawn to her unique charm. I have seen it diminish professionals of all standings, and no one seems immune to her smile or her chubby cheeks.

And it is this happiness that moves me to protect and safeguard her innocence. More so , than with her big sister. I can be fierce when it comes to protecting and defending Zoe and it is because her innocence is like that of an infant. She is who she is. She gives affection, love and attention without thought or discrimination.

As a mother I try to imagine Zoe later in life. Is this her special gift?  Is it instinctive and who she is? Will she be like this her whole life long or will life’s lessons teach her discretion and caution, replacing her unlimited happiness and affection?

As a special needs mom, even imagining the future is impossible. Unsure of her intellectual ability, I can’t even guess. I can have hope and faith and see progress.

For today ..celebrating who she is and her happiness is enough.

. 

It was our bedtime ritual. Hug, squeeze, kiss.. and I love you’s. I would say the words while signing the gestures. We finished with Eskimo kisses.

I leaned forward to rub my nose against Zoe’s, but her nose wasn’t meeting mine. Instead, her hands were quickly moving. She was signing…..I- Love – You. I melted, completely.

I know I am lucky. I say this because many special needs children are unable to communicate spontaneously, unable to express even basic affection.

There was a time when Zoe was very, very quiet. I had to remind everyone she came in contact with , that her receptive language ability was fine and that it was important to talk to her constantly.

At the same time, we started teaching her signing. We were lucky to find a qualified ASL teacher Christine, that Zoe loved , who would come to the house weekly. We watched Signing Times videos until the whole family mastered the basic signs. Finally her language began breaking through. First through signs and then vocally, with word approximations. Sounds we understood as beginning words. Sounds that her speech therapist, Robin, taught us how to practice

It isn’t easy. As functioning adults, we take the ability to express ourselves through language- for granted. As parents of typical kids, we take the verbal “ I love you , Mom” for granted. Or I did, until that night, when her nose did not meet mine for Eskimo kisses and her hands took flight instead.

To read more Words_Unspoken.doc 

The Best Gifts

I am a lucky, lucky girl. ( okay , no longer a girl.. but anyway..,) I have been blessed with the best gifts…

The Gift of Music. I admit that I lost track of how uplifting a good tune can be.

I know every Barney song, Disney princess melody and yet could not tell you what is playing on radio stations today or what my favorite artists have released in the last 5 years. Until my recent birthday, when my husband, love of my life , gave me an iPod.

I spent the first night dancing through my kitchen and falling asleep with my earpod’s in. ( sorry, honey…..) I have rediscovered the soulful therapy of music.

A Love Letter. It had been a long time, and this unexpected, no occasion love letter clearly proclaimed my value as a partner, wife and mother. The latter , something we Mom’s second guess every day.

The Gift of Family.  This year we celebrated Zoe’s 3^rd birthday early with a family & friends affair .. ( see Zoe & Grandma above). The kids had a wonderful time- Their excitement,enthusiasm and affection were thrilling!

Fresh Flowers . The last time a floral delivery arrived at my doorstep, I was crushed to discover it was a delivery for my neighbor. This time the beautiful pink roses were just for me!

Good Health. No hospitals for Zoe in 2005. No infections for Olivia. Life is good.

And last but not least…

Good Coffee.. I admit , I’m addicted. And thanks to some generous friends I have 3 Starbucks cards to choose from. Here comes another Hazelnut Latte. Just what every sleep deprived Mom needs…

I am blessed!!!

I handle stress well. That is what my friends would say. That I am strong, tireless and as my husband will say, even tenacious.

For a period of 6 months last year- Zoe and I were in the hospital 6 times. Only a few days each visit. But each time, she was very sick and we did not leave until she was better. I folded my six foot body into her hospital bed. I held her for repeated IV's, blood tests, high fevers.. And during those times... I never cried. She would ask for Daddy, her big sister, and even sign to go home.

And only when we were home, after many nights of hospital sleeplessness, after bathing her and tucking her into her bed at home , after holding her big sister and drying her tears, would I finally cry. Sometimes standing in the hot shower, sometimes laying in my bed staring at the ceiling. These episodes changed me.

But, I have come to the conclusion that I am no different than any other Mom. We don't just hate it when our kids are sick - it hurts us and we take time to heal. We are protectors, nurturers. Instinctively, we want to gather them to our breast and keep them safe. Seeing them suffer is.... well, weakening. It weakens us, it makes us wonder, how much can we handle? We second guess our strength.

It isn't just my little one and her surprise fevers, illnesses brought by her disease.. Big sister, too- when she is ill- I comfort, I hold her - but it isn't enough.

It leaves me feeling, vulnerable. I shut out the outside world and focus all my energies and resources on making them well. And somewhere we Mom's, find the strength, the focus and the energy to comfort with a smile, and to laugh with love.

Afterall- I want them to remember the laughter and the loving. Not the tiredness and tears....

1. Kisses are like Band-Aids.
2. “On-time appointments” result in bathroom emergencies.
3. Coughs need cuddle treatment.
4. Bubbles make kids smile.
5. Baby wipes can erase bodily fluids from your favorite outfit.
6. Johnson & Johnson No-Tangle spray can be your beauty secret too.
7. Little ears are always listening.
8. Music makes kids happy.
9. You can never praise your kids enough
10. A mothers instinct is always right.

      And… all fussy eaters love home-made mac & cheese- recipe below:

    Mac & Cheese- Made with Love

   Let your child choose the pasta shape-cook 8 oz, boil & drain.

   Pre-heat oven to 375 degrees-( you can skip this option for impatient little ones). Melt 3 tbsp. of butter, stir in ¼ cup of flour until thick.

   Add 2 cups of milk and stir slowly until almost boiling. Stir in 1 ½ cup of grated

  cheese into milk. Mix pasta into pot with sauce and serve- or spoon pasta into casserole dish, mix with sauce and top with ½ cup of grated cheese. Place in oven for 18-20 minutes.

  *** I often make extra and place the adult dish in the oven, with mixed in chipotle, peppers , onion etc and let the kids enjoy the stove-top finished mac & cheese ( above).

Dear Little One,

Things are not always as they seem.

We were at the park the other day, you and I, and your big sister too. She is four, only a year older than you, but she can run and jump and climb. And you, completely in love with her, always laugh and clap- and share her joy. Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently.

On this day we can see the playground ahead, and your sister begins to run. My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait. You are impatient; there are probably hundreds of tiny footsteps between you and your sister. You reach your arms up asking for help. You want me to carry you. I refuse the voice in my heart and I say “no”. I take your hands in mine and we begin the slow walk together.

Finally when we arrive at the playground, you want to climb. I hold your waist, your arms and sometimes just your hand to stabilize you as you move carefully up the steps. A little boy, almost half your size walks by you, too close -his body briefly making contact. It is enough to challenge your balance and you begin to fall. My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide.  I place you in my lap. You begin to scream loudly and I see the boy’s mother studying you and me. Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment. We push off the top of the slide and you are crying in fear as you always do. And five feet later as we reach the bottom I hold you in front of me and you laugh! We are closer to the boy’s mother now, and we make eye contact. Before I can even consider conversation she asks “How old is she?” Almost three”, I reply... “And your boy?” She answers that he has just turned one, a few months back. She abandons the conversation, afraid and unable to ask the obvious questions. She turns her head and her eyes follow her son instead.

You see, little one….things are not always as they seem. When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me. You may even be restless or fussy. Others may see your physical size, your neediness and think I am indulging you. But things are not always as they seem, I know your needs.

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior. But I know you are adapting to the challenges of your environment the best that you can. I know your special needs.

Love, Mommy

I struggle to live a dual life comparable to Clark Kent/Superman. To the naked eye, I may appear to be a mild-mannered woman in ordinary street clothes. However, folded neatly in my drawer is my Supermom costume, the Target t-shirt that transforms me into the Supermom hero.

The Supermom that can quickly recite my children's daily food consumption broken down by food group, the number of hours/minutes they slept within the previous 24 hours, Olivia 's school school schedule for the morning.. music, art or math and Zoe's complicated daily therapy sessions. The Supermom who has given up her Lancome lipstick for Olivia's strawberry lip gloss.

Somewhere around 2 am this morning, I lay in bed thinking about my day today. More importantly that I am turning 37 years old- and a very different woman than I was 5 years ago. But what did I give up really? The daily newspaper for www.cnn.com updates throughout my busy day? The personality of a driven, workaholic too engrossed with her work too consumed by what her colleagues thought of her- and how I ranked in the company's superstructure? All for the better these things went by the wayside.

Today, I own my own business, work according to my own schedule and am too busy to really care what strangers may think of me.

There was a time when I thought all of these changes were just about becoming a mom. Preparing me to protect my daughters as a parent, nurture them like a mother.

But today I know better. I believe my first experiences with Olivia, with motherhood initially, were really about more.It was about preparation,being capable to handle something more. Being strong enough to fight for the care and diagnosis Zoe deserved. Learning to love completely .

I have spent many hours worrying about Zoe , and spent twenty or so nights sharing her hospital bed over the last year. Not lately though, she has been healthy and is finally making progress, with language especially. Like many 3 year old special needs children ,it is too soon to comprehend her total cognitive ability. Although she has many challenges- her greatest gift is her affectionate and fun loving nature.

And so I wasn't really surprised to read my birthday horoscope today- the last line... Gemini lightens your mood. Zoe, born May 28, is the only fun loving Gemini in my life.

I am hovering like all mother's do. Practically bent in half, my long body is close to the ground. Trying to match the height of my almost three year old, Zoe. I am behind her.

As I have been taught, I don't touch her. She knows I am there but I am not allowed to give her the extra security of my touch. I hover with my hands in air- I will catch her if her balance reactions fail. She is learning to use her forearm crutches, and it takes almost all of her energy to manage her tiny steps into coordinated movement with her crutches.

We are walking the short path that leads to our front door. It is perhaps ten feet in distance and I am sure, has been traveled by hundreds of footsteps. Hurried footsteps, slow and leisurely footsteps. Footsteps born from strong legs with healthy muscles.

A hummingbird crosses our path. As Zoe moves her eyes from her feet to the bird, the rapid shift in vision causes her to lose her balance. We stop to watch the hummingbird as it dives into the trumpet vine. It finds a place to perch and begins to sing. Zoe is delighted as I am sure she believes the impromptu concert is for her. She giggles and the bird stays.

In these few feet Zoe has walked hundreds of tiny steps but for our family she has run a mile. I watch Zoe as she begins to hum. She radiates pure joy.

It is not the act of nature she is celebrating but her independence. She is learning to walk. As she continues down the path she sings. Even though she is struggling, she finds peace. And for this simple blessing I am grateful.

For more about my journey with Zoe..Download edited2amothersinstinct_2.doc