Life Lessons At the Grocery Store

I have a terrible flaw.  Well, I have many flaws, but one of my worst is that I am constantly making comparisons and, far too often, I allow those comparisons to dominate my thinking.  Lately, it has been about the progress Gabriel makes, in school, relationships,  life.  I see other kids with Down Syndrome making such huge gains, and pass him up in terms of academic skills, and social skills, and it breaks my heart. Then I torture myself near daily with self doubt about whether I am doing right by him.  This was going to be a new week for us.  I had everything planned to get us back on track after some very difficult months.  So, of course, that plan went right out the window first thing this morning.  Gabriel got up and went to make his usual breakfast of Life cereal and milk, only to discover we were out of milk.  We were out of a lot of things, as it turned out.  The important thing is that Gabriel is a boy for whom structure and routine is obsessively important.  We simply could NOT get on with our day until he had his cereal and milk, so off to the grocery store we went.

It was good trip, he was extremely helpful in selecting fruits and vegetables and finding the things we need. We were chatting and productive.  Then, when we went back to one aisle to grab something I had forgotten, I met a kind lady who, in the course of two minutes altered my entire way of thinking, and shifted me back to the track I should have been on.  I think I was on it once, but I had lost my way.

The conversation was short.  She said to me "Your daughter is beautiful."  I smiled and said "Thank you.  His name is Gabriel."  She apologized for calling him a girl and I told her it was not a problem, since I was the one who chose to keep his hair long.  Then she told me "My daughter was like your son," and as she got tears in her eyes, she added "I miss her so much."  Her daughter had lived to the age of 44.  We both fought back tears and we hugged.  She told me how smart she thought Gabriel was, and how impressed she was with his clear speech.  She said her daughter had always had trouble with speech.  Her daughter, of course, was born in a different era.  In all likelihood, her daughter was hampered more by lack of support and services, than she was by her  extra chromosome.  None of that really matters, though.  All that matter is that she loved her daughter so much, and she didn't have her here anymore.  Despite the improved health outcomes for people with Down Syndrome, it is possible, even likely, that I too, will outlive my son.  So does it really matter is he is learning as quickly as the others?  Does it matter if he faces more challenges?  I don't think so anymore.  As long as I make sure he knows every day how loved he is.  (I am ashamed to admit I have not been good at that over the last couple of months). What matters is that I have him here, with me, NOW.  

I wish I had asked her name.  I owe her my thanks for reminding me to enjoy him, enjoy our life together, here and now.  I needed to stop letting all my anxiety over what-may-be dictate so much of our daily life, and she finally gave me the kick I needed to get my head back on straight.  So tomorrow, we have a dentist appointment and school.  Whatever school work we get done will be good enough, because we can start again the next day.  Together.

Nicholas, My Pickle-ous

I am so thankful for my Pickle, Nicholas.  I can't believe he is already twelve years old!  Where did all those years go? I love that, at this pre-teen phase, when so many kids are no longer wanting to hold a parent's hand or express affection, that my sweet boy is still full of hugs and kisses.  He still holds my hand as we walk, or when I drive, and he hugs and kisses all of us constantly.

I especially love the way he engages with his brothers.  I was afraid that the five year gap between him and Elijah would mean limited commonalities.  But Nick loves to play with them.  He wrestles with them and plays Legos with them.  When asked, he reads them stories, and he does it with flair, leaving the Gabe and EJ  cracking up, no matter what the story.

I love his creative mind.  He is constantly creating stories, some he turns into comic books, others he just tells you as he makes it up on the fly.  He has such an active mind and I look forward to seeing where that takes him as he grows into adulthood.

One of the things I really admire about him is that he has remained a social boy who wants to engage people .  Socially, he struggles, and has had to deal with rejection and bullying, but instead of letting that turn him into an introvert, he continues to put himself out there.  He talks to complete strangers when we are on an elevator, or crowds we are with when standing in line.  He will engage in play with kids he has just met in a park or a store or anywhere.  I love that about him.

I love that he is learning how to conquer his fears.  Two years ago, he was terrified to get on a stage.  He now has a speaking role in a play.  He is afraid of heights, but he just went on Splash Mountain for the first time and loved it. Still working up to the roller coaster, but he will get there.

Nicholas is such a gift, to me, and to his brothers.  I am so grateful I got to be his mom.  Love you Pickle, to the end of the universe!

I Hate Making These Kinds of Decisions

Next Wednesday, both Elijah and Nick have their "graduation" ceremonies.  Nick is graduating from 5th grade, EJ from Kindergarten. At the exact same time.  I realize that some people consider a kindergarten graduation to be a bit over the top, but EJ really struggled this year and made some huge gains.  I also know his teacher very well, and I know the amount of effort she has put into making it a very special day for both kids and parents.  Fifth grade is more of a milestone, and the ceremony will be more formal, less sentimental, I assume.  Like Elijah, Nicholas also overcame much this year.  It was his first and only year at this school, so there aren't the years-long friendship bonds other kids have.  He has grown so much and pushed himself in ways he never has before.  This was a huge year for him, and I want to celebrate him.


Unfortunately,  I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion.  If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom.  When is it ever that easy? We explained the situation and asked for their thoughts.  Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy!  I want Mom!"   Here is where I have to give Elijah credit.  That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be.  I think you're wonderful!"   Wait.  It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying?  You're supposed to cry." Nick's response?  "Ok, FINE!  You can have mom."  He didn't say it graciously.  Robert was right there for the whole conversation, by the way.  Poor Daddy.  I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle.  Apparently, they have no problem with that.  Must be a guy thing.  Maybe if Robert let them see him cry . . .


So I guess it's settled.  Kind of.  I still feel the mom-guilt. So now the question is "can I trust Robert to video it?  And who can I ask to take pictures for me since the only good camera will be with me?  Now taking volunteers.

Bad Mom Award

Here it is, my bad mom moment for the week.  Nick was on the verge of tears and I pushed him right on over the edge in to full on cry.  By laughing. Out loud.  In front of him.

We were getting ready for school, and while he was supposed to be eating breakfast I was getting my clothes, when he came in on the verge of tears to tell me that there was something in his ear and he couldn't get it out.  I made quick a glance and saw nothing.  I told him I didn't see anything.  He was insistent, and said it really hurt.  I still didn't see anything, when he confessed "It's a carrot!"  I pulled his lobe a bit and looked closer and sure enough, there was a broken off piece of carrot lodged in the canal.  And I burst out in a fit of giggles.  I'm sorry, I know that's not very supportive of me, but . .   a carrot?  He's TEN!   Shouldn't he have outgrown the compulsion to stick food into orifices other than the mouth by now?  I guess the memory of the goldfish cracker when he was four has faded.  I tried to suppress the giggles while I asked him "Can you please explain to me the thought process that lead to this decision?" but that just made him cry more, so I stopped giggling, apologized, and gave him a big hug.  I got a toothpick and promised him that I would only try once, and then take it to the doctor if  I couldn't get it out.  Fortunately, it came out without much effort, and he even managed to laugh at the whole situation.

That was yesterday.  Wonder what they have in store for me today?

I'm Still Working On It

This week, we finally signed the IEP for Nicholas.  It's official.  I have three kids in Special Ed.  For anyone reading this who hasn't heard the term IEP, it stand for Individualized Education Plan, and every child in SpEd has one. It lays out the qualifications, and goals for the child for the year. Ever year, we meet, go over the progress, and rewrite the goals.

The decision of the IEP team, in Nick's case, is to send him to a different school in the district for 5th grade, so that he can participate in a program for kids with high functioning Autism and Aspergers. It is a Special Day class, he will not be mainstreamed.  The program is wonderful and I know he is going to thrive there.  I am even hopeful he will make some real friends.  On the whole, this is a good thing.  Yet, when I went to sign the paperwork, I just wanted to cry.  

I'm not even sure why.  We are so blessed.  I have more than one friend whose children have had to fight just to live.  My friends deal with brain tumors, and leukemia, and liver cancer.  My kids have it so easy in comparison.  But I still want to cry, and I feel guilty for feeling that way.

I know in my head how lucky we are.  I know in my head that while it won't necessarily be easy, they will be okay and happy.  My heart just hasn't quite got the message yet.  It still feels the sting of seeing my son in tears after being teased and bullied.  It feels the sting of judgment and assumption that comes when others look at my kids and don't see them for who they are.  It feels the sting when I can see in people's eyes that they see labels and stereotypes instead of people: "Down Syndrome"  Autistic"  "weirdo"  . . .  the r-word.

I am grateful.  I am, truly, grateful that my children are healthy, and don't have to fight the battles other children do.  But in my heart, that's not enough.  I want them to be seen for who they are,  accepted as is,  included and valued for their unique gifts.  It's not too much to ask is it?

Or maybe, I just need to focus less on what the world thinks, and spend more energy on being grateful for the privilege of being their mom, and for their health and all the love and support that surround us.  Maybe I just  need to get over myself and my hangups.  I'm trying. 

I hope my stronger friends, whose children have real fights to fight, will forgive me, and be patient with me.  I look up to you, and want to be more like you.

I'm still a work in progress.

See Me

SEE me.

I am creative.

I am funny.

I am affectionate.

I am curious.

I am capable.

I am smart.

I am artistic.

I am fun.

I am kind.

I am silly.

I am serious.

I am thoughtful.

I am aware.

SEE me.

I am a learner.

I am a dancer.

I am a gymnast.

I am a musician.

I am an athlete.

I am a story teller.

I am an artist.

I am a scientist.

I am a singer.

I am an actor.

I am a writer.

I am a boy.

I am a son.

I am a brother.

I am a friend.

SEE me.

I am not Down Syndrome.

I am not Autism.

I am not retarded.

I am not weird.

I am not limited.

I am not disabled.

I am not what you think.

See ME.

I am worthy.

I am full of wondrous possibilities.

I am amazing.

See. Me.

Random Tales From the Motherhood Trail

So I'm trying to potty train Elijah and Gabe at the same time. Oh joy. I have to tip my hat to you moms of twins and triplets or more. On the first really serious keep-them-at-home-and-naked-and-make-them-drink-too-much-water day of our adventure, I started with the method that had worked so magically with Nicholas. Potty presents!!! They each had their own basket full of goodies haphazardly wrapped in brightly colored tissue, and told them they could have one each time they went on the potty. As it turns out, this is the same day they both suddenly developed bladders of steel. I made them start drinking water, and kept them drinking, but when we went to sit . . . nada. I basically spent the first, oh, three hours of my day going up and down the hall putting kids on the potty every 10 minutes, and I have to tell ya, it's wayyy more exhausting than it sounds. Eventually, we went in, Elijah sat down first and "Hallelujah!" there was pee!!! Never thought I'd ever get that excited about a bodily fluid. So, after much excitement and celebratory high fives, Elijah gets down and Gabey gets on, and . . . nothing. Elijah, being the helper that he is (I'll have to have a whole separate post about this new phase), he says to his brother, "Gabey, you got to pwess you bewwy button! Dat make it go!" Alas, Gabey's button wasn't registering quite yet. He did get his first success shortly thereafter, and had only one accident that day. I ended the day very excited at the prospect of moving out of diapers. The next day I got them their first new underwear, which was a fun diversion for all of a day. Turns out I have to check the enthusiasm a bit.

It's been fun watching how Elijah's brain works. Whereas Nick, at the same stage thought "Cool, I get presents for going potty. I can do that." Elijah thought "JACKPOT!" He very quickly turned the training into a tool for aquiring new things. He would ask for a present for the slightest amount of production. He'd go for about a second and a half, and then give me this wide-eyed look and say "It stopped. Now I got to get a potty pwesent!" Then he'd go right back to the potty, and if it didn't happen, he'd say "I think I need some wa-ter" and go drink some more. I ran out of potty presents that day. I made an emergency shopping trip that night while they were in bed and bought every cheap toy from ever dollar store bin in the area. Nick's rewards lasted much longer, but he isn't the manipulator Elijah is turning out to be. Eventually we had to turn to M-n-Ms (thank you Godmommy!) They are cheaper and last longer, but Elijah is still doing his best to finagle as many M-n-Ms has he can. Gabe, on the other hand has pretty much decided it was fun for awhile , but now he's over it and may I have my diaper back please? ~~sigh~~

School started and Gabe still has to wear the diapers to school because he has no bowel control, but I sent the M-n-Ms and they will work with him there, and when he gets home, I make him run around sans britches. He will get there. It's just going to take a while longer. Elijah is basically there, he just needs to work on the bowel control. He has the pee mastered, but he's still working the M-n-Ms to the best of his ability. He also started saying, when he sits down and nothing happens immediately, "Just give it few seconds." Gee, I wonder where he learned that?

When they are both finally done, and I can cross diapers off my to do list forever, I am throwing one big party. Who wants to come?

So cute, your heart will explode!

Yeah, yeah - I know. All moms think their kid is The. Cutest. But none of them have my Peanut to show! Today was the dress rehearsal for his recital tomorrow, and I have to say, he and his girlfriend ROCKED THE HOUSE! And the pictures they let me take after - Ooohhhh, melt me like buttah!!!! Don't say I didn't warn you.

My Special Boy at the Special Games

Not to be confused with the Special Olympics, for which Gabe is too young yet, a local chapter of Kiwanis hosts a Special Games event for local kids with special needs. There is an opening ceremony with parade and lots of events for the kids to "compete." It was a wonderful day, despite the 100 degree temperature. Peanut really had a grand time participating! Due to the extreme heat, the athletes lost steam after the first couple of events, and everyone started to break for refreshments and snacks early. They ended up breaking down the events early, I think for safety's sake. The two events Gabe participated in were the Flag Relay and the Tennis Ball Toss. I am so looking forward to this event in the future! Here are some pictures from the day and my beautiful boy having fun at the games!

Welcome to Holland

The following poem was sent to me, by a few people, when we first got the diagnosis on our Peanut. I have since shared it with others going through the same heartbreak. If you have a child with special needs, I'm sure you know this piece well. If you don't, and you haven't had the pleasure of reading it yet, I hope you enjoy it. It was written by Emily Perl Kingsley, a mother to a child with Down Syndrome.

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.

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.

The Smile

I’m standing in the kitchen with my husband at midnight, when I hear the telltale shuffle of feet in the hallway. In comes Gabriel, my sweet little peanut, all bleary eyed, looking for someone to cuddle. So I scoop him up, he wraps his arms around my neck and I carry him back to bed. “Do you want mommy to cuddle?” I ask, knowing he does, but wanting to hear that innocent soft “Yethhh.” So I lay down with him in his bed. We face each other, I lay on my right side, he on his left. I wrap my arm over him, and facing me he puts his palms together and tucks them under his cheek. We look at each other and he gives me that huge grin of his, the smile that could power a city. Gabriel has THE most charming, engaging, heartmelting smile. It is his biggest defense when he knows he’s been mischievous. His teacher often laments that Gabriel is hard to discipline because he is SO charming and he knows exactly how and when to wield that smile.

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

Another piece I wrote some time ago.

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 OB about monitoring him carefully. At 36 weeks, (4 weeks before due date) he still hadn’t turned, and our OB scheduled a version, a procedure where they manually push the baby around. We came in at 37 weeks, 2 days and the OB successfully flipped him around. Four days later, my water broke, and Gabriel George was born exactly 2 weeks early weighing a healthy 7 pounds even. He cried a beautiful cry, and I breathed a huge sigh of relief! (Nicholas had been born with the cord around his neck and was rushed away because he wasn’t breathing). They handed me our son and I got to look into those dark gray eyes. He was beautiful! We were so excited that he was here and we loved him so much! It was a wonderful birth. Then, they wheeled him away. They told me that his oxygen was a little low, they were going to go get it back up and they’d be back soon. After 20 minutes, my husband came back and said it would be a little bit longer and he went back to be with our son. Eventually I was wheeled from the delivery room to my own private room, where I waited. At noon, they said it would be another half an hour. Then my husband came back again. Our son was being transferred to the Neonatal Intensive Care Unit, or NICU. Then he left again. My son was born at nine in the morning. I didn’t get to see him again until after 4pm. As happens with roughly fifty percent of all babies with Down syndrome, our son was born with heart defects. Four of them, to be exact. He spent 10 days in the NICU, then went home with oxygen tanks, for another ten days. Those first days were hell. Leaving the hospital without the baby to which you’ve given birth is a heartbreaking experience. At the same time, Nicholas began to feel the effects of his parents disappearing to the hospital everyday, and started to scream and cry every time we left him with my parents, a place he usually preferred. I felt like I had let down (and was losing) both my sons.

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 Space Mountain at Disneyland?” He assured me that my son could ride roller coasters, just like any other kid. He is now on the edge of toddlerhood. He can stand up by himself and walk using a reverse walker, or just holding our hands. He communicates using some words and a lot of sign language. He ADORES his big brother and Nicholas adores him right back. They kiss and cuddle and wrestle with each other everyday. Nick is his biggest influence and motivator. The love between them is enough to bring tears to your eyes. We can see the path now. It’s not the same one as before, but that’s okay. We can see up ahead there will be some rocky patches, and a few potholes, but along the way, the colors are more vibrant, the aromas sweeter. It’s a lovely path, and I’m glad I’m travelling it.

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.