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.

Angels on Stage

It is difficult to find time to blog on the weekends, so I think I will combine all my weekend gratitude into Monday's posts from now on.  Today I want to share with every possible person I can reach, how an organization called Angels on Stage has changed my family.

Angels on Stage is a theatre troupe serving kids with special needs.  The kids who perform with AoS run the gamut in terms of challenges.  There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it.  I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent.  Many of these kids would never have been given a role in a typical theater production.  AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education.  They create an atmosphere in which all the kids, no matter the challenges, can thrive.

There is a song that they sing at the end of every practice, and also at the end of each show.  It starts with just one Angel standing alone singing the words "If just one person believes in you.  Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it"  making it two . . ."  and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then  fourth.  Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too."  (And now I pause because I can't even type the words without crying.  Good golly am I hot mess of sentimentality.)  This is now our fourth season with AoS and I still cry every single time I hear them sing that.  What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.

The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic.  The truly do.

My own experience with AoS began when Gabriel joined in their second season.  It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book!  I cried through all the performances, not just for my Peanut, but for all those kids.  They truly blew me away!  They embraced the opportunity with such fervor and such joy.  It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and  declare "Here I am!  Look what I can do!"  The following season they put on an amazing production of Aladdin that, again, just left the audience in awe.  That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating.  It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice.  My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome.  I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome.  When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided,  I asked him if he would like to join, and he was very hesitant.  He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels.  It is not about the production, it's about YOU.  So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.

That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines.  (He was a Card).  We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night.  But he told the production manager he would try on show night.  Friday night they had the first performance, and they all come out and performed their roles and left us all in tears.  Then an Angel came out to start singing Just One Person.  Then the second Angel came out.  And then Nick.  Holding a microphone and singing on stage in front of a packed theatre.  I don't think there are words to describe what a huge victory that was for him.  I'm quite sure no parent was crying as hard as I was.  Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem.  Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.  

That is what AoS does.  They take kids who so many see as "disabled" and from whom many  don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible.  I get to spend every Saturday morning surrounded by and working with all of these extraordinary people.  I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice.  These people have become my family.  They have helped to nurture my children, and they have nurtured me.  They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.

I am going to end this post with a request, which is not something I would normally do, but this is more than important to me.  Please share this.  Share it with everyone you know.  If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so.  The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world.  You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform.  You won't be disappointed.  Thank you.

And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS.  You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are.  That is a gift beyond measure, and all I can say is thank you and I love you.

The great thing about the Pity Party

If you read my last post, I had kind of a crappy day on Friday.  I got over it, and we are all in a better place today, and it actually started to get better not long after I wrote that post.  I got to spend the evening with some of my favorite moms, who let me know, it wasn't a table for one.  Sometimes it may feel that way, but I was reminded that I am never ever alone.  It's reassuring to find out there is nothing wrong with me for wanting to cry sometimes, and that there is nothing wrong with me for admitting that this journey is not always sunshine, rainbows and unicorns, and that others read my vents and are grateful to know they too, are not alone.


More importantly though, I reminded that I am so lucky and grateful to be travelling this road.  If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people.  I simply cannot imagine my life without them.  They bring such a depth of joy, and love to this life.  So yeah, sometime it sucks, big time.  But the upside is that most of the time, I am surrounded and supported by so much love.  Not just for me, but for my children.  That my boys are loved and cherished by my family and me unconditionally is a given.  That they can be cherished and valued by others who truly see them is such a great gift. 


Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion.  And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are.  No one will be happier or prouder of their kids than we will be  that weekend. And that joy is only intensified by our recent moments of  "this sucks."  It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper. 


One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down.  Oh, what a ride! I always wanted to go again.  You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together!  Some didn't like it. They went on the merry-go-round.  Nothing.  I like the roller coaster.  You get more out of it."


I love the roller coaster too.  Always have been a roller coaster kind of girl!  Maybe there was a reason for that.  "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that.  I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days.  The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride.  Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.  

Heartbroken

Today is Elijah's birthday, and he is turning 6!  I am so happy for my little boy who is growing up so fast.  He is such a sweet little man.  We had a little celebration for him at school, then I came home, where Gabriel and I baked a cake that is now in the oven.  Presents are wrapped and we are going to have a great day.

But I have been fighting tears all morning.  Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this.  Why, one may ask, would a mom be sad on the occasion of her son's birthday?  Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for.  While confirming an upcoming playdate, one of Elijah's friends rejected his brother.  He very clearly expressed his desire that Gabe not be included.  He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it.  But I did.  And it hurts.  Enough that I'm crying the day after.

One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school.  Yeah, we have him involved in other activities so he gets socialization.  But it's not the same as going to school everyday and seeing the same friends everyday.  I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will.  But the sting of that first real rejection really stings.  And I'm left questioning the wisdom of my choices.  Is the academic advantages of homeschooling worth the cost of relationships?  I'm not so sure today.  I look into his beautiful face and wonder "What is the right thing to do?"

He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type.  God I love this boy!  I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:

  So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time. 

And to those who would say I'm whining about my choices, all I can say "eff you."  Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply.  It's okay for me to say so.  If you don't get that, then the problem is with you.

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.

What a Week

When I woke up this morning, I was feeling really . . . off. My throat was scratchy, which is no big deal, but I had no energy. I felt like I hadn't slept all week. Robert is such a saint, he let me take a nap all afternoon, and while I am no longer tired enough to sleep, I still feel really drained. Honestly, I think if I had a good cry, some of my energy might be restored, but I was sitting here trying to figure out WHY I feel so rotten, and it occurs to me this week was probably one of the most emotionally draining weeks I've had since Gabe's last serious illness. The obvious event was the surgery of my friend's son, Teddy - the one for whom I dyed my hair blue. The surgery was on Wednesday, and I spent the day at the hospital with my friend's family until he was in recovery and they could go be with him. It was a pretty tense day, waiting while an eight year old boy we all loved had his brain exposed so the surgeon could remove a tumor that we smack in the center. At the end of the day though, Teddy proved what an amazing kid he is, and he proved the power of prayer a hundred fold. The surgery went smoothly, they were able to remove the entire tumor and it looks to be benign. That night I really felt like crying, but never did, so I guess I've been carrying that around all week.

What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.

But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.

For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.

Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.

But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.

At Least She Is Predictable

Following my previous post (which apparently reveals me to be an angry bitter person. That should come as a shock to my friends.) Sarah Palin did me the favor of proving me right. Her outrage over the use of the R-word, as it turns out, is nothing more than a political tool.

Before I explain further, I do wish to retract something I said. I said I think Rahm Emanuel should be fired. I take that back. Rahm Emanual, whatever other flaws he may have, handled the criticism like a grown up. He apologize and he signed a pledge to eradicate that word from his vocabulary. I appreciate that.

As it turns out, other far more vocal people have thrown the R-word out there, most recently Rush Limbaugh, and Sarah Palin didn't have much to say about that. Everyone's favorite psycho talk show host, Glenn Beck has used the term repeatedly on air, and Sarah Palin has remained silent. When confronted with Rush's transgression, Sarah's spokesperson issued a watered down generic statement about how it's not nice for anyone to call names, and then she later walked it back by clarifying that she was not talking about Rush in particular.

So, let's review. A democratic member of the President's staff issues the word in a closed door meeting amongst a small group of people, and Sarah Palin composes a lengthy diatribe on her facebook page about his lack of decency and demanding that the President fire him. Rush Limbaugh and Glenn Beck repeatedly use the term on public airwaves where they are heard by huge numbers of people, and that gets . . . nothing. The Democrat apologized and signed a pledge. Sarah thinks he should be fired. The Republicans have offered no sign of concern or recompense. Sarah remains silent.

Sarah Palin is as transparent as she is shallow. She has no convictions. She can't be bothered to defend her son, unless it is politically advantagous for her to do so. She truly is shameless. Trig deserves better and so does our country.

Sarah Palin Sure Loves to Talk

Her latest diatribe is against Rahm Emanuel, for his ignorant use of the R-word. Let's be clear, Rahm Emanuel is an ass. I hope he gets fired. He deserves every ounce of criticism he gets.

But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.

Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.

Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.

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?

Seven Years Ago Today

After months alternating between fear and anticipation, and 15 hours of labor, I met my miracle. He was born at 9:05 am, and weighed exactly seven pounds. Although he made it to 38 weeks and was a healthy weight, he still was whisked away from me before I could hold him. For seven hours, I had no idea what was happening with my baby boy. I was taken to my room, and my only distraction was news coverage of a massive fire that had broken out at the newly built Santana Row shopping complex. And a nurse aptly named Charity. Charity came and sat on my bed and wrapped her arms around me and just let me sob. She stayed with me for quite awhile, and came back often. She got me through the longest seven hours of my life. Finally, at 4:00 in the afternoon, I was able to go to the NICU and see my beautiful Gabriel George. His heart wasn't working properly and he couldn't keep his oxygen levels up. Over the next ten days, we met with cardiologists, and Gabe and I worked very very hard to establish nursing. Not easy when your baby is too tired to wake up and has the muscle tone of a rag doll, which is exactly how he felt when we held him. After ten days, we were allowed to take him home, along with several boxes of oxygen and extra cannulas. Seven months later he had surgery to repair his heart.

And now, seven years later, he is the most amazing little human I have ever known. He loves music and dance. He loves his brothers, and has a particularly tight bond with his baby brother. If I dare show up to pick him up from school without Elijah, the first words out of his mouth are "Mommy? Where zha-zha?" He has no shortage of self esteem. He is quite in love with himself, really. He will dance in front of the turned off TV and watch himself in the reflection all day long if I let him. This June he performed in his seventh recital.
He loves going to school, and is on the cusp of reading.

There really aren't words sufficient to describe the love we share. He is an amazing miracle and I am so grateful he is mine.
I am, without a doubt, the luckiest mom in the whole world.

Better Late Than Never: Buddy Walk '08!

I promised to put up pictures from the Buddy Walk 3 months ago, but my camera got dropped and met its maker, somehow in the process corrupting a file on the card, so we couldn't download them. No reader could find the pics. My awesome super genius hunny figured out a way to get them onto his work computer, so now we finally have them YAYYY! To recap - this year's Buddy Walk was a success in terms of turnout, despite the downpours of rain - which I actually quite enjoyed, as opposed to the heat of years past. Fundraising was down, but that was to be expected. The best part was having Sharkie , the San Jose Sharks mascot there! Gabriel and Nicholas even made it onto the local news!!! (Not sure if the link is still good, but if it is, you can see the segment here. Gabriel and Robert are at 1:42, and Nick is at 2:20 into the video.)Sharkie helped our team lead off the walk, and both Nick and Gabe loved him! Elijah was a bit timid, what with him being terrified of his own shadow and all. So, I'll stop blathering now, as I know all you really care about are the pictures. Enjoy!

Here is Gabriel with Sharkie:

Getting ready to start the walk, with storm clouds looming in the not-so-distant distance:

The Firefighters came and brought an engine for the kids to explore. The kids loved this more than the bounce houses!

He make look like he's all cuteness and light, but behind the precocious smile lies the heart of a true troublemaker. I can't fathom where he gets it!

My Sweet Peanut. Dontcha just want to eat him up? This kid melts my heart daily.This is my amazing wonder woman friend, Marcie, and her beautiful daughter Maddie. We're hoping to be related by marriage someday. =)

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.

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.