Monday, May 10, 2010

My Sweet Girl is Nine Years Old

I can't believe my little girl is Nine Years Old. It seems like yesterday I found out I was carrying her little soul in my womb.

At that time, I could not imagine how my life journey would be so Richly many incredible people and experiences would enter into our lives because of an extra chromosome.

Her Birth was one of the most Magical and Precious moments in my life, because her unplanned birth gave me a gift I had only dreamed of......of delivering my own child ~ myself.

This child truly fills our days with laughter and joy. Yes, there are tears and frustrations at times, but on a whole, it truly is amazing how much happiness she radiates.

Her birth story is here, if you would like to read how this little imp entered into our lives and forever changed this Momma's heart and soul.

Happy 9th Birthday my Sweet Emma Sage ~ we love you dearly!

Emma Sage was very concerned that it be 'Mother's Day' first and then her birthday. I always decorate the house with balloons and steamers to help make the children's birthday yesterday I hear her come down to make me breakfast in bed and she 'gasps' and says "Wow, it really is my birthday too!" [how cute is that?]

Nine years old

Wednesday, May 05, 2010

To My Soul-Sisters *~* Happy Mother's Day

To You, My Sisters
© 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 ungergo 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 physiatry.

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 on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

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

Sunday, May 02, 2010

My little girl loves to sing this song to me, and how fitting it was part of our Mass this well as the baptism of a precious little girl named Olivia. Emma Sage just radiated love when she was talking to me during the service and went over to say 'peace be with you' to our newest member of our Church community.

Lately, I have become a bit overwhelmed with life.....just too many things to do and not enough time. But this little Imp of mind seems to always find a way to bring me to a sense of peace and balance.

She has me stop to smell the flowers.....she takes her time walking through the garden center [as I am on a mission to get the things on my list so I can get home in the gardens and plant] but there she is, taking her time, touching the foliage, smelling the flowers, asking me "What is this plant called?"

Yesterday she stops and picks a petunia.....she gets down on her knee and hands it to me and then kisses my hand. I ask "are you pretending to ask me to marry you?" [like her beau Ryan did in Boston [click here to see the proposal] and she says "NO......I just wanted to tell you I love you and to show you how beautiful the color purple it is on the inside" Sure enough, the flower was the most exquisite color purple......but in my hurrying to just 'buy' what I had come in for, I have walked right by......noticing the purple flowers, but not really 'LOOKING' at the incredible hue of purple.

Thank you my sweet have taught your Momma well.