Here are some pictures from the first egghunt:
“There is only one way to happiness and that is to cease worrying about things which are beyond the power of our will.” ~ Epictetus
Saturday, March 29, 2008
Texting the Easter Bunny
Here are some pictures from the first egghunt:
Friday, March 28, 2008
Welcome to Holland
I am often asked to describe the experience
of raising a child with a disability --
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel: It's like this...
When you're going to have a baby, it's like planning
a fabulous vacation trip -- to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, 'Welcome to Holland.'
'Holland?!?' you say. 'What do you mean, Holland?
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy different guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you have been there for a while and catch your breath,
you look around....and you begin to notice
that Holland has windmills...and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."
And the pain of that will never, ever, ever go away...
because the loss of that dream is a very significant loss.
But...
if you spend your life mourning the fact
that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things...
about Holland.
Monday, March 24, 2008
I'm Just Like You
I am the mother of three boys. Though I think my boys to be remarkable, all for their own unique reasons, I don’t think I am a particularly remarkable mom. I have good days and bad days. Some days I think do a great job, others I am not a good mom at all. I think that makes me fairly typical. My kids, on the other hand, they are not typical. My oldest has Asperger’s, not something that is immediately apparent just by looking at him. My middle son has Down Syndrome, which is immediately apparent. My youngest, so far only has a serious case of bad-attitude-itis, earning him the nickname Diva, but he does show some of the sensory “quirks” his oldest brother had as a toddler, so the jury is out on whether he falls into the neurotypical camp or not. Having two kids who are different than the standard “norm” certainly presents some challenges that other parents don’t have to face, and we have been though our share of tears and frustration. But at the end of the day, we are just like any other parent. We are proud of our kids’ accomplishments, we hurt when our kids hurt, we get frustrated when their behavior challenges us. So it always catches me off guard, and makes me feel terribly uncomfortable when friends or acquaintances tell me what a great mom I am, or how special I am. They seem to believe that because I have been thrown a few curveballs in having to deal with “special needs” that I am somehow a superior parent. I’m not. Most of the time, I feel wholly inadequate to the task, and think God made a huge mistake by entrusting their care to me. So when people feel like heaping me with praise, I feel like a complete fraud. The truth is, I’m not doing anything that any other mom wouldn’t do. I did not volunteer for this job, it was given to me. So, like any mom would, when illness or emergency or other challenges come, I steel myself, and care for my kids. We all do what we have to in order to keep our kids safe and healthy and happy. My situation may require a bit more energy, and sometimes greater emotional resolve, but I know any other mom would also find the strength they need, if they were in my shoes. It’s what moms do. My kids are special, in many ways and for many reasons. I’m just a mom who loves them more than life itself. Just like most moms.
Saturday, March 22, 2008
What is so Wrong About Reverend Wright?
The totality of Wright’s sermons, indeed of his life’s work, has been to bring positive change into the lives of those in his community. His theology is one of social justice. The words at issue, though angry, are not false in taking our nation to task for its failures. The very foundation of social justice theology, as I have come to understand it, is not to take for granted that we are blessed as a nation by God for our greatness, but to hold the nation accountable for its faults and prod it to work harder to earn God’s blessings through greater works. When Wright chastises
And what of his comments about AIDS. Certainly on their surface, they seem absurd, and it would be easy to write him of as a crazy
Actions speak louder than words. We have been exposed to a handful of sound bites, which people are willing to use to condemn a man, and label him hateful and unpatriotic, but his actions do not support that assumption. Over his forty year career, Reverend Wright, and his congregation have brought enormous positive change to their community. Action speak louder than words. Look not to the pieces of words, but to the works they support. For all the anger and offense of those incomplete pieces of his sermons, the effects are something to be praised, not condemned.
So what about Senator Obama? I admit I did not vote for him in the Primary. But after this week of outcry and accusation, and after looking for and reading more of what his pastor preaches and what he has done, I can say I unequivocally will vote for him in November. This firestorm, and his response, has convinced me that this is the kind of leader this nation desperately needs. Barack Obama is the antithesis to everything we have grown accustomed to in a government. We have lived with dishonesty, corruption, division, secrecy and abuse. Here is this man who is open, honest, and forthright. He has responded to all of this with uncommon grace, intelligence and honesty. Policy differences aside, everyone can see this is a man of character, integrity and true moral fiber. His opponents fear that and they have done their best to damage his character, because policy differences alone won't defeat him. What this nation needs is a leader who will bring respect and dignity back to our government. His opponents see that and fear it, so they tear him down, label him a racist and an
Friday, March 21, 2008
The Smile
I’m standing in the kitchen with my husband at
Gabriel is four years old now, in preschool, and still adjusting to life as a middle child. His baby brother, Elijah, is almost a year old, and despite the (now mutual) jealousy, they are starting to get along. Gabriel has even begun to show affection toward the Mommy-stealer!
I can’t believe how much Gabriel has grown since he was a toddler. He started walking just before he turned three. At almost the exact same time, we discovered he loved to dance. Pregnant with Elijah, I was miserable and sick, and not a very attentive mother. So I put movies on for Nick and Gabe whilst I languished on the couch. After a couple of weeks, I grew rather weary of all things Disney, and forced the kids to watch something I liked, and I chose “Singing in the Rain” with Gene Kelly and Debbie Reynolds. Gabriel LOVED it! He was absolutely enthralled with all the music and dancing! He very quickly began imitating the dancing, especially the “Make ‘em Laugh” routine by with Donald O’Connor and Moses Supposes His Toeses are Roses! He must have watched that movie a hundred times over the next couple of months. We eventually moved on to Wiggles, and he quickly memorized all of their dances, and would do them when we played the music CDs! So, after Elijah was born, when Gabe was about three and a half, we enrolled him in dance class. He takes tap and ballet, and he is an absolute star in the making. He had his first recital and he was the only one who didn’t forget the steps, or get stage fright. The music started and he just started dancing! At his second recital, he didn’t miss a step, despite a too-large top hat falling down over his face, forcing him to essentially dance blind. At the end of the dance, he rightfully took the biggest bow! He has such a passion for dancing. I pray he never lets that go.
At the moment, Gabriel’s biggest challenge is his language development. He loves to talk and tell us stories, but he cannot quite form the words just yet. He does have a vocabulary of about 50 words, but they are words only his father and I understand. Box is “bothh”, Fries are “whiiithhh” Please is “weeth” I just know that when the words do come, he will be a great storyteller. He is so animated and excited when talking to us. He has the BEST facial expressions, especially when he’s looking at us like we’re dense. My favorite, of course, is the smile. Always, the smile.
More about my Peanut
Gabriel is now 3 ½ years old. The first thing most people notice about Gabriel is his vibrant smile and enormous laugh. He has a great joy within him that people find irresistible. Of course, most people aren’t around long enough to see his other side, the stubborn, determined side that can frustrate the most patient among us. His determination is both a strength and a weakness. It serves him well when pursuing his favorite activities, but it can hold him back when he refuses to attempt a new task, or frustrate mommy when he won’t put on his pajamas.
Gabriel has boundless energy. He loves to run and dance. Whether dancing along to Gene Kelly in “Singing in the Rain” or dancing along to Wiggles music, Gabriel is constantly in motion. He loves to jump and tap and twirl to the rhythms of music. He will even dance to Beethoven’s Fifth Symphony, or sometimes to no music at all! Gabriel has loved music from very early on, quickly realizing where the CD player was and how to manipulate buttons to turn it on and increase the volume. Before he could stand or walk, he would sit and bounce his torso and sway back and forth to music! We recently enrolled him in a toddler tap/ballet class and he is having a great time. He stays focused and learns the routines very quickly. We are so excited to see his first recital!
Along with his love of music, Gabriel has a love for art and painting. The opposite of his big brother in many ways, Gabriel is our creative, artistic child. He enjoys creating and exploring different media for creation – and mess making! One of his favorite activities is when I line the hallway walls and floor with butcher paper and let them have at it with markers and crayons!
During his quiet times, Gabriel is a cuddly, very affectionate little boy. He loves to cuddle and read books with Daddy. His affection is not limited to family members. He shows great love for everyone, from the teachers and therapists, to neighbors and friends. He definitely is not a shy boy.
While Gabriel has not developed many words, he is an excellent communicator, and is able to make his wishes known quite easily. He learns signs readily and uses them with ease. He will come and take you by the hand and lead you to the bookcase, or the refrigerator, or the door, to let you know where he wants to go and what he wants to do.
Gabriel is in preschool and LOVES being in school. He loves to learn and enjoys being a part of the busy classroom atmosphere. We are very proud of all the progress he has made in school.
Gabriel just recently became a big brother. He has alternated between great affection and burning jealousy, which he expresses through monster tantrums. He knows he’s not the baby anymore and he is not happy about that. Fortunately for baby, he is affectionate most of the time.
When I look at my three little boys, I have for each of them the same exact dreams. I want them to grow up knowing truly, in their hearts, that they are greatly loved and deeply cherished. I want them to grow up to be independent, caring, altruistic and loving. I want them to find loving wives, and I want them to choose as their professions that thing for which they feel a great passion. These things are possible for all of them. When others look at my boys, they may notice my middle son is not like the other two, but I know that when it comes to the things that matter most in this life, my three sons are exactly the same.
The Gift of Gabriel
This is a piece I wrote a few years ago, about my son, which I originally published on Epinions. I like to write about him every once in awhile, mostly for myself, but sometimes to encourage others. My Peanut, as like to call him, is an amazing human being, and I love to show him off and share him every chance I get. This is the first piece I ever wrote about him.
The Gift of Gabriel: Learning Our Son Has Down Syndrome and How He Enriches our Lives
“I’m sorry. Your baby has Down Syndrome.” That’s how she said it. The genetic counselor called to give us the results of the amniocentesis, and I could tell by the sound of her voice, before she even said the words. The thing is I knew before she even called. Call it instinct, or Mother’s Intuition, but I had that voice in my heart, though I had been suppressing for weeks. As soon as I got the AFP results back, I felt it. My son would have Down syndrome. Even so, there is no way to prepare oneself for the confirmation of one’s worst fears. We had been plucked off our well groomed, well lit life path and plopped down into utter darkness, not knowing when the light would shine again and what path would be there when it did.
Grief and Guilt
Grief is the first, and most understandable reaction to such news. My dad, the eternal optimist, couldn’t understand all my tears. He’d immediately logged on and downloaded as much info as he could about DS as soon as we shared the news. From his perspective, we were way over-reacting. I could only explain it as feeling we had lost a child, something my dad knows. Yes, we were still having our son, but all the dreams and plans we had for him and our family were now gone, replaced with uncertainty and fear. As with any grief process, we needed time to process through it. Compounding those feelings, however, were the huge pangs of guilt I felt. At the time, my firstborn son, Nicholas, was only 17 months old. He would be less than 2 years old when his brother joined him, and his well-protected world would be forever changed. I felt as though I had let him down. He wouldn’t be getting the brother I thought he should have, and would want. Now, I worried if he’d be able to play with his brother at all. I worried about him being teased at school for having a brother who was different. I worried that his adult life would be shaped by the responsibility of having to care for an adult baby brother.
But I Don’t Want to be Chosen
As the news of the diagnosis spread, our dearest friends were so wonderfully supportive. We received continuous phone messages, and cards. Mostly, they simply said they loved us and were praying for us and were there if and when we wanted to talk. Some, particularly my mother, wanted to help us try to develop a better understanding, and offered us a simple explanation in the form of “God Chose you to be the mother of this special baby.” I hate to say it, but that really didn’t help. I didn’t want to be chosen. I wanted a “normal” healthy baby. At work, my colleagues were unanimous in the opinion that if there were anyone who had to be given this special child to raise, I was the logical choice. As a teacher, I was the “go-to girl” at my grade level for mainstreaming special needs students. I’d volunteer to integrate them when others would hesitate. Not trying to toot my own horn, but I think (and I believe my former colleagues would agree) I had a gift for teaching the special needs kids. Inevitably, they become my favorites, the ones to whom I become the most attached. I didn’t just enjoy teaching them. I loved them. So it came as no surprise to my colleagues that God would choose me for the task of raising a special needs child. At the time, that was little comfort to me.
A Glimmer of Light
Nicholas, through all of this, was basically unfazed, although a bit perplexed by all the crying. He’d never seen either of his parents cry, and now we were in tears near daily. His response, however, was the beginning of our healing. One afternoon, my husband and I slipped into the bedroom for a cry, leaving Nick to play with his toys. He noticed our absence right away and came toddling in to look for us. He saw us standing there crying, then turned and walked out. A minute later, he returned with one of his favorite toys in his hand being offered up to us. That’s where our healing began, in the tiny hands of our 18-month old. He saw we were unhappy and wanted to make us feel better. Even at that tender age, he cared about the feelings of others, and tried to do something about it. I knew then that God HAD chosen not only me, but also my family, to love and care for this special child. Nicholas was going to be the perfect big brother for our new son. I started looking forward to their meeting.
What’s in a Name?
As we began to emerge from the darkness, we set about looking for the perfect name. With both boys, I gave my husband charge of the first name (although I reserved veto rights) and I chose the middle names, always from someone in my family who was important to me. When Nicholas was born, I chose for his middle name the middle name of my youngest brother, who died when I was eight. My husband didn’t want to use his first name out of respect to my parents. He chose Nicholas without much thought. It was a name we both like and so that’s what he chose. For this child, however, he spent a great deal of time looking through the baby name book, searching for a name whose meaning spoke to him. One afternoon, after a couple of weeks worth of searching, we were all relaxing on the bed, Nicholas and I playing while my husband flipped through the book. Without saying anything, he put the book down and started to cry, leaning over on my lap for some comfort. Nicholas immediately climbed on him to hug him. Quietly, he told me he found the name, and handed the book to me, pointing to the name. “Gabriel: Meaning – Hero of God” and the name of my own baby brother.
My parents gave us their blessing, I gave Gabriel the middle name George after my grandfather, and we set about preparing ourselves for his arrival. I won’t lie and say it suddenly got any easier. It didn’t. But giving him his name made it more real, more personal. We weren’t just having a baby; we were having Gabriel, a person. The roller coaster ride continued, but the ups and downs became less severe as time went by.
Educating Ourselves while Dealing with the Uneducated
We didn’t exactly dive right into research. We had to weed through many emotions before we were emotionally capable of reading about all the risks that come with Down syndrome. We started slowly as we got closer to the due date. We were fortunate to be under the care of a wonderful perinatologist who was as adept at calming parents and talking to them sensitively as he was at medical procedure. The genetic counselor was also helpful and a wealth of information. The most difficult part for me wasn’t learning about my son’s condition, as much as dealing with people who didn’t bother learning about my son’s condition. As I mentioned before, the first thing my father did when we broke the news was to get on the internet and download as much info he could find. The very next day he handed me several pages of stuff he had printed out for me and assured me it wasn’t as bad as I was making it out to be. Sadly, not everyone around us was so resourceful. I will never forget the day I was asked, “Have you used up your extra chromosomes on this baby? If you have any more will they be okay?” I was so dumbfounded by the query, I hardly knew what to do. If I hadn’t been merging onto a freeway at that exact moment, I may very well have slapped the person. I remained calm, however, and responded simply with “Since this has happened once, the risk goes up for it to happen again” and left it at that. As soon as I was out of the company of that person, however, I cried, and continued to cry, off and on, for 2 days. This was near the end of the pregnancy, so this person, a family member, had known for several months at this point, and I was hurt and upset on more than one level. First, the insinuation that I had somehow caused this, that it was my fault that Gabriel had Down syndrome. Second, that this person had known for months and hadn’t bothered to so much as check out a book from the library or do a Google search on basic High School biology. I had too much to deal with. I didn’t have time to educate the masses.
Anticipation, Elation and . . . Crash
As we neared the due date I became anxious for the birth. Though we had done research and were prepared for the various medical risks coming our way, I was still praying the same prayer every night: “Dear God, Please grant us a miracle and heal our son.” I can say now I got half of my request. The rigors of being pregnant while tending to the needs of a 21-month old were really wearing on me and I was more than ready for Gabriel to arrive. Five weeks before the due date, the perinatologist told us Gabriel was still breech and suggested we talk with the
A New Path Revealed
Fastforward to the present: Despite a rocky beginning, Gabriel is now thriving. He is 2 ½ years old and has a very determined personality, along with a golden smile and the best laugh I have ever heard! He had open-heart surgery at 7 months old to repair his heart, and it’s as good as new now. I asked the cardiologist at his follow up “I just need to know, when he’s big enough, can he ride
What Have I Learned?
Gabriel has brought us more than joy. He has made us better parents. He has truly taught me the difference between big things and little things. Very few people, in my encounters, REALLY understand that. Too many people waste their energy getting angry over the little things when the fact of the matter is, there is very little in this life worth getting angry over. I don’t care if you cut in front of me in the grocery store, or your car door hits mine in the parking lot. I have my sons. They are healthy and thriving, and nothing else matters. As a parent, Gabriel has made me more patient. The stages of development last longer for him, so I can’t get frustrated or impatient just because he doesn’t master the use of a spoon as quickly as I want. If I am to help him and support him, I have to sit back and allow him to learn and explore and discover at his pace. This, in turn, makes me more patient with Nicholas, and a happier parent all around. I can savor the kind of things that would drive most other parents crazy. A while ago, Nicholas got into his paints while I was in the shower. He covered his hands in paint and made handprints on the entryway wall and bathroom door. Rather than yell, or punish, I calmly reminded him that paint is for paper, and put the paints up. Then I got the camera and took pictures of his handprints. It was a big deal to me that he did that. Until recently, he couldn’t stand having his hands dirty or wet. He hated sand and mud and dirt, or even food, on his hands. Now he’s moved beyond that, and I am proud. I don’t think I would have been able to appreciate that milestone if it hadn’t been for Gabriel. As he grows, he will no doubt continue to teach us. His presence in this world will teach all who know him how to understand, accept and love those who are different. Nicholas will learn about compassion without even realizing it. As for Gabriel’s own milestones, well, he will hit them all, in his own time. Instead of worrying about what he’s not doing at a certain age, I appreciate that I have been given the one thing that I know every mother wishes – that our babies could stay babies just a little while longer. Mine has, and I’m loving every minute of it.