Dedicated to all my "sister's",that I walk with in both worlds ....Happy Mother's Day

Longer post than usual.You might want to read a little and then return and,I'm not kidding... it's that long.Hope you'll hang with it.Worth it I think.Not my words however, but the words of others,written so very eloquently and spoken straight to my heart. I continue my journey in what,on some days, feels like two different worlds. You see,I often find I have my foot in the doorway of each of them.Much like many of you who come here daily.For me,I find myself trying to do my very best in the role of a blessed mother of 5 typical children,while the other world finds me equally blessed but often, not as gracefully, trying to navigate my way,as the mother of the amazing Miss Zoey.On some days these worlds seem to be complete polar opposites.They are of course filled with joyous similarities but simultaneously, they are also filled with glaring incongruities but at the end of the day both are overflowing with such beauty, that I wonder how I ever came to be the lucky mother of these simply amazing human beings.A very Happy Mother's Day to you all and,whatever world you find yourself walking in,be proud of yourselves, and of the magnificent "cathedrals" you are building ... I am privileged to be walking beside you.



Thoughts of a Mom

By Maureen K. Higgins

"Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."


The Invisible Woman ....


"It all began to make sense, the blank stares, the lack of response, the

way one of the kids will walk into the room while I’m on the phone and

ask to be taken to the store.

Inside I’m thinking, “Can’t you see I’m on the phone?”

Obviously not. No one can see if I’m on the phone, or cooking, or

sweeping the floor, or even standing on my head in the corner, because

no one can see me at all. I’m invisible.

Some days I am only a pair of hands, nothing more: Can you fix this?

Can you tie this? Can you open this? Some days I’m not a pair of hands;

I’m not even a human being. I’m a clock to ask, “What time is it?” I’m

a satellite guide to answer, “What number is the Disney Channel?” I’m a

car to order, “Pick me up right around 5:30, please.”

I was certain that these were the hands that once held books and the

eyes that studied history and the mind that graduated summa cum laude

– but now they had disappeared into the peanut butter, never to be

seen again.

She’s going … she’s going … she’s gone!

One night, a group of us were having dinner, celebrating the return of

a friend from England. Janice had just gotten back from a fabulous

trip, and she was going on and on about the hotel she stayed in. I was

sitting there, looking around at the others all put together so well.

It was hard not to compare and feel sorry for myself as I looked down

at my out-of-style dress; it was the only thing I could find that was

clean. My unwashed hair was pulled up in a banana clip and I was afraid

I could actually smell peanut butter in it. I was feeling pretty

pathetic, when Janice turned to me with a beautifully wrapped package,

and said, “I brought you this.”

It was a book on the great cathedrals of Europe. I wasn’t exactly sure

why she’d given it to me until I read her inscription: “To Charlotte,

with admiration for the greatness of what you are building when no one

sees.”

In the days ahead I would read — no, devour — the book. And I would

discover what would become for me, four life-changing truths, after

which I could pattern my work: No one can say who built the great

cathedrals– we have no record of their names. These builders gave

their whole lives for a work they would never see finished. They made

great sacrifices and expected no credit. The passion of their building

was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the

cathedral while it was being built, and he saw a workman carving a tiny

bird on the inside of a beam. He was puzzled and asked the man, “Why

are you spending so much time carving that bird into a beam that will

be covered by the roof? No one will ever see it.” And the workman

replied, “Because God sees.”

I closed the book, feeling the missing piece fall into place. It was

almost as if I heard God whispering to me, “I see you, Charlotte. I see

the sacrifices you make every day, even when no one around you does. No

act of kindness you’ve done, no sequin you’ve sewn on, no cupcake

you’ve baked, is too small for me to notice and smile over. You are

building a great cathedral, but you can’t see right now what it will become.”

At times, my invisibility feels like an affliction. But it is not a

disease that is erasing my life. It is the cure for the disease of my

own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As

one of the people who show up at a job that they will never see

finished, to work on something that their name will never be on. The

writer of the book went so far as to say that no cathedrals could ever

be built in our lifetime because there are so few people willing to

sacrifice to that degree.

When I really think about it, I don’t want my son to tell the friend

he’s bringing home from college for Thanksgiving, “My mom gets up at 4

in the morning and bakes homemade pies, and then she hand-bastes a

turkey for three hours and presses all the linens for the table.” That

would mean I’d built a shrine or a monument to myself. I just want him

to want to come home. And then, if there is anything more to say to his

friend, to add, “You’re gonna love it there.”

As mothers, we are building great cathedrals. We cannot be seen if

we’re doing it right. And one day, it is very possible that the world

will marvel, not only at what we have built, but at the beauty that has

been added to the world by the sacrifices of invisible women."