Your Future Awaits

Eighteen years ago today, your birth mother brought you into this world. Six years ago, your family brought you to me.

Those six years have not always been easy, but I believe that along the way you have learned what a loving family is like. You have been given wings and been allowed to stretch them. You have experimented with life in a safe environment, and are forming your path for the future.

The first twelve years of your life were lived in a way that shouldn't have been. But you amaze me with your resilience and your willingness to move forward when others in the same situation would have stood still.

Your future is waiting, and I pray you will remember the lessons of these last six years. Never lose your compassionate heart - never compromise the things in which you believe - try not to choose the wrong path that others in your past chose for you.

Stay strong - believe in yourself - and always, always keep love in your heart.

Happy Birthday, Corey!
Corey's Mom

Twenty Years of Joy and More To Come!

Twenty years ago today, at 11:40 PM, my life changed. A dream that began growing in my heart at a young age took flight, and I gave birth to the most incredible son in the world.

He and I have been through a lot together. From the day of his birth when his father was being arrested for behaviors not befitting a new parent – to the difficult times while I learned to be a single parent – to having to share his mother with four adopted siblings, some of whom caused and continue to cause great stress in both his life and mine – to the many joys we have shared – he has stood strong.

He is a good man, in the truest sense of the word good. He is caring and loving and committed. He fights for his sibling’s rights all the while keeping an eye to the future and the rights of all that are oppressed.

He wants to make the world a better place, and I know beyond any doubt that he will. The good he will do in the future is already written on his heart, and I believe that the positive difference he makes will be felt by many.

He is my heart, my love, my son. I am so proud of you, my dear Chip, proud of all you have accomplished and of all you are yet to accomplish. No mother could ask for more than you have given me.

I love you – Happy Birthday!
Chip's Mom

Special Exposure Wednesday

After lunch last Saturday, the kids and I decided to look for Halloween masks that everyone could wear while handing out candy. My kids are too old for trick-or-treating, but they still love the costumes.

We searched long and hard, but finally the PERFECT solution for my three sons was found. In all the history of Halloween, NEVER has there been a set of three masks so perfectly suited for my three 'stooges'!!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Worth Watching

I'm having a YouTube sort of day...so today I decided to share two of my favorite videos with you.

The first video was made by Joey Mazzariono, head writer at Sesame Street for his adopted daughter Segi from Ethiopia.

The little girl seemed quite unhappy with her hair when she compared it to the sunshine blonde of her favorite doll, Barbie.

"She was going through this phase where she really wanted like the long, blonde hair. ... She would look at Barbies and really want the hair, "said Mazzariono in an interview to an entertainment daily.

The video shows the muppet wearing different hairstyles like braids and cornrows, singing about how she loves her hair and does not need to go to a beauty salon. The whole idea was to educate little girls to like themselves as they are, according to Mazzariono. A lot of Afro-American girls can now identify themselves with Segi.



The second video features Johnny Knoxville, the lead actor in JackAss 3D. Now, who would have thought I would ever like someone like that, especially in a movie like that!

This clip shares footage of Mr. Knoxville's movie, The Ringer, and also features Eddie Barbanell. Eddie Barbanell has Down Syndrome, and in this video, he and Mr. Knoxville talk about the use of the R-Word. Just for the record, the movie, The Ringer, is endorsed by the Special Olympics. Don't be like me and make an assumption about the movie from just reading a synopsis of the plot. The movie is a jewel about inclusion.

Amsterdam International

A fellow writer, Dana Nieder, has taken the essay called Welcome To Holland and added the dose of reality all parents of children with special needs need. She has given me permission to repost her essay, Amsterdam International, here.

Dana is an amazing writer and an amazing parent. After reading this repost, please visit her blog regularly. You will NOT be disappointed.

AMSTERDAM INTERNATIONAL

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

Oodles of Ologists

In the last couple of weeks, we've been to a neurologist, a rheumatologist, a nephrologist, and an urologist. I'm really tired of ologists...

But a lot of good has come out of all those visits.

Ashley's seizures are slightly more controlled. She started on a new medication and had an old one removed. The new med seems to be doing a good job, and she's not even up to full dose on it yet. In addition to fewer seizures, she also seems to feel much better which makes her happier. Score one for the neurologist.

Ronnie saw a new nephrologist and reports are good. His kidney disease is stable - not better but not worse either. The doctor thought Ronnie looked very healthy and is encouraged that we can keep a kidney transplant at bay for quite a while longer. Score one for the nephrologist.

Ronnie also saw his urologist. The bladder surgery he had last summer has improved his overall health, and is no longer a contributing factor to his kidney disease. Score one for the urologist.

My rheumatologist has tweaked my lupus and rheumatoid arthitis medications a bit, and I can already see a little positive change. Score one for the rheumatologist.

Okay, so maybe ologists aren't so bad after all!!

Made My Day!

YES, YES, YES, YES!! There is hope....

State-run institutions will soon be a relic of the past in Georgia under a landmark settlement reached Tuesday that could serve as a model for similar efforts in other states, Justice Department officials said.



(Built in 1842, Central State Hospital was Georgia's first psychiatric hospital, chartered by the legislature in 1837.)