Celebrating Holland

It rained and rained and rained today .... but that didn't stop us from Celebrating Holland!  We had a great time with 3 of our new friends.  Babies played and Mommies who share a very special bond hung out.  It was great and I can't wait to get to know these Mamas even more!  I wanted to get more pictures but I was just so busy yapping my jaws...shocking, I know, right?

But I did get a cute one of Skylar and Ethan....

Can't wait to see our new friends next week at The Children's Museum of Richmond!

A First for Me....

I knew it would happen, I've read about it happening to other Moms so I shouldn't have been so taken back. But...I....Was! 

Ethan has started taking a class at a local gym called romp n' roll and he loves it, the music, the lights and the bubbles.  Oh man he LOVES the bubbles.  He mostly just loves to do his own thing and here is where I insert the word "TYPICAL"  you know like a typical almost 2 year old.  The problem is though is that he is not typical, developmentally he is more like an almost 1 year old.  So I signed him up for the "Babies Class" the kids are anywhere from 6 months to 12 months and the first couple of classes that we have done have been fine but I think the kid has gotten comfortable.

Because today, he decided to act like a typical almost 2 year old with all of these sweet little almost 1 year olds.  You know what I'm talking about, throwing things, being defiant and laying down and throwing a tantrum when it was time to do something he didn't want to do.  Just real typical stuff and had we been in a class with other almost 2 year olds I wouldn't have cared a bit. But we can't be in a class with other almost 2 year olds because he is just not there yet.

In fact I'm the Mom that will walk her screaming and crying kid from the front of the church all the way to the back of the church in the middle of a sermon and take them to the bathroom and ahem I'll let you figure out the rest.  I don't tolerate it, my parents didn't, my grandparents didn't and I don't!  In fact, I have even walked out of a grocery store and left a cart full of groceries because I gave a "if you do that one more time we are outta here" and had to follow through.  Yep, I'm that Mom and I don't care what you think about my parenting style.....but alas, I guess I really do. 

And I'm not happy about it one bit!!!  I hate that I felt the big fat elephant in the room after class as the awkward silence came over us as we were putting on our shoes and leaving. I felt like they were thinking to themselves - why is this kid here interrupting my kids fun time?

 I felt like I needed to say something, to apologize, to explain why Ethan is the way he is. Wow, that makes me so angry...I don't feel that way about the other ones when they act up! Guess, I need some advice from some other special needs Mamas....any one want to help a sista out?

For My Sisters

I totally stole this from my girl over at Kidz a connection for inspiration. I never in a million years thought I would be a part of this sorrority but I am.  I was welcomed in on that hot day in July of 2008 when as I was laying on an Ultrasound table watching my Sweet Ethan move and heard the mumblings of a Doctor who told us he didn't have a life worth living.

I know a lot of you Mama's will relate....

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 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.


By Maureen K. Higgins