Author: Melissa

I know just about every mom falls into this trap but I think it’s especially true of moms of kids with special needs. In an effort to be good mom or, in my case, to encourage whatever bits of successful communication I heard from my little Monkey, we become very responsive…in my case, perhaps a bit…hyper-responsive. I so desperately wanted him to talk for so long that, once he started to talk, I did whatever he asked because OMG! HE ASKED! Then it got to be habit.

I’ve tried to back off. If I do everything he asks he’d never walk down stairs, he’d never put his own socks on, he’d never go to school (we’d just ride the Green Line all day.) Clearly he does all of those things now ((I do sometimes still carry him down the stairs as a special treat *shh*)) so I have gotten better. I just haven’t quite broken him of his habits…a conversation from this morning.

Scene: I was sitting at the dining room table with a monster cup of tea and my laptop. Monkey was in our living room, just out of sight.

Monkey:  Money! C’mere.

Money: … (sipping tea, reading facebook)

Monkey:  MONEY! I did it!

Money: What did you do?

Monkey: I did it, I fixed ’em! C’mere!

Money: What did you fix?

Monkey: C’mere, Money!

Money: …

Monkey: Money!

Money: …

Monkey: Money! MONEYYYYYYYYYYY!

Money gets up, clearly this is an emergency!  She walks to the living room and sees her son sitting on the couch, his eyes glued to his laptop screen, with one hand stretched out toward her holding…his dirty socks. She stands silently, watching him, eyebrows nearly merged with her hairline.

Monkey looks up, grins, hand still out: Take ’em?

No, Money didn’t “take ’em”. I think I still have lots of work to do in this area…

I’ve had a rocky relationship with this well-known bit of writing. It has comforted me and it has angered me. I actually took a great deal of comfort in it in the first few dark days when I was in such shock. I needed some sort of hope that it would all turn out OK because I couldn’t see any possibility of that on my own. Then, once reality started settling, it made me angry as hell. My whole life got blown to hell and you’re telling me it’s just a detour and I’LL GET OVER IT??? That I’ll find JOY in it, you dumb @ss @#$&@^#*&?

I’m back to a place of taking comfort in it because, guess what? The author has lived this life and she actually knew something I couldn’t know back then. It does get better. You can find an appreciation for this unexpected detour. You can make great discoveries, the biggest for me, was the discovery of true joy in this life. I’m not saying this to cheer anyone up or provide encouragement to new families, you’ll walk your own road and I hope some day you’ll get here too, I’m saying it because it has been true for me.

But it’s not all beauty and discovery and I feel like the original didn’t fully recognize the pain and heartbreak of Holland. I saw this blog entry shared on Facebook today and I think it’s a nice addition to the Welcome to Holland essay:

My Holland from A Diary of a Mom.

For my Italian friends … The following is based on the beautiful essay, Welcome to Holland, by Emily Perl Kingsley.

There are the days that I wouldn’t trade Holland for the world

The days that I stand in awe of the windmills’ quaint majesty

And marvel at the overwhelming beauty of the tulip fields

There are the days that I scoff at Italy

The days that I feel downright sorry for those who have never been to Holland

Never wondered at the beauty created by Rembrandt’s brush

What they are missing here, I tell myself

Poor souls!

How much richer they’d be for a visit someday

For a walk in these wooden shoes

**

And then there are the days that I look more closely at the Dutch landscape

The days that I see past the tulip fields to the mothers wringing their hands, waiting – always waiting

The days that I see the doctors – the specialists and therapists – everywhere it seems, filling the streets, doffing their caps as they move from one house to the next – an endless conveyor belt of service and need

There are the days that I see the siblings, struggling with dual citizenship in two dramatically different nations – neither of which they can fully claim as their own

There are the days that I can no longer smell the fragrance of the flowers for the stench of desperation and fear

The days that I send my girls off on the train, backpacks full with supplies for their daily trip to Italy

Knowing that only one of them speaks a word of Italian

Relying on a host of translators and guides to keep my youngest safe on such desperately foreign soil

There are the days that my heart simply breaks because I can’t make the whole world speak Dutch

There are the days that I watch the planes flying in – filled with mothers clutching their children, looking out the window, ready to point to the Spanish Steps and the Colosseum – knowing they’ll find out soon enough, that’s not where they are

There are the days when I wonder if my girl even notices the windmills, or the tulips – if she knows there are Rembrandts here

Or if she simply wishes that she were in Rome

**

There are the days that I see my Holland for what it really is

A breathtakingly beautiful place

A place full of love and compassion

Freedom and camaraderie

And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better

Some friends and I are planning a weekend retreat and there are “NO BOYS ALLOWED!” I’m terribly excited, I’ve not had a mommy’s weekend ever. Duhdee has taken a few weekends over the years to go snowmobiling with the guys but I’ve just never felt the urge to do the same.

In a matter of a few days my thinking has been transformed from “I just don’t see the point.” to “OMG, I WILL GO ANYWHERE YOU WANT TO GO! EVEN CANADA!” This change may have had a little something to do with the approximately one gallon of mostly digested chicken nuggets I found myself cleaning up the other night or perhaps the puddle of still warm pee I stepped in right in front of the toilet. Perhaps.

I knew Duhdee was going to be jealous because the other Moms who are going are some of the most amazing people on the planet ((And I’m not just saying that because I need this weekend away, lol.)) but I didn’t realize he was going to be this jealous. This morning while I was getting dressed, he was encouraging Monkey’s latest phrase du jour…

“Get OUT!” my little Monkey-man roared. I might have been offended if he’d been able to say it without laughing or if, you know, the whole point wasn’t my getting OUT for a few days.

Earlier this month I was asking, “Why can’t I let this go?” in regards to Halloween. I read an article on Boston.com today and leave it to another parent to provide the answer.

Other than her wedding and the births of her children, said Diane Carfarelli, her happiest family moment remains Jack’s first go-out Halloween. “I always wanted him to have the childhood he deserves,’’ she said softly, when asked what having that experience meant to her, “even if I’m uncertain about his future.’’

*Tears* That’s just it exactly. I want that for Monkey too and every time one of these seemingly pointless rituals turns into a failure…I feel like I have failed him.

The article can be read here: Facing down fear, a treat at a time. School helps autistic children find some Halloween joy.

Welcome to the sorority of strong and broken hearts
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 psychology.

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.