In Her Own Words ~ What The Walk Meant to Yael

Yael, Leora & Noa ready to walk for The YaYa’s!

Today Yael wanted to share her own thoughts with you. So, here is her perspective on today’s Georgia Walk for Autism.  In her own words…

This is our fourth year walking for autism. While we were driving to Atlantic Station, my Mom and I were talking about why we do the walk. We talked about raising awareness and raising hope.

Today, we did. We raised awareness by inviting our friends and family to walk with us. We let our teammates know about what we want to accomplish this year and about why we want to do the walk. We also raised hope. I know I feel hopeful by looking at how many people are more aware of autism and caring for those who have autism. Today felt great because of all the people we walked with, who love someone with autism.

I am so happy that my friends and my family care for me and that they want to help raise money for organizations like Autism Speaks and The Marcus Institute. For me, on a personal level, I am happy to be different. I feel special with autism. It’s part of me. I feel special every year when I walk. I feel cared for by my parents who have helped me since the beginning of my diagnosis, my sisters who make me smile from their cheering, and my best friends who were so sweet to take their time off & walk with us since the beginning of The YaYa’s. It means a lot that they come and are  always there for me. I also loved having my newest team member and homeroom teacher, Lauren, because she knows what it is like to work with special needs kids and is always there when I have a problem at school.

I hope that I can inspire others who are living with autism.

This is what today felt like for me… in my own words.

Me & My Girl!

Just Put One Foot in Front of the Other

Alone we can do so little; together we can do so much (Helen Keller)

I’m all registered and ready to reunite our team for the 2012 Georgia Walk for Autism. Our team name, “The YaYa’s” is inspired by Yael’s nickname, given to her when she was only days old.

Every year I look forward to the walk. Some might wonder why that is. I’ll tell you…

First, the walk reminds me that there is strength in numbers. Looking out at a sea of people, numbering in the thousands, reminds me that our family is far from alone on this journey. The collective strength of the families, friends, educators & professionals that walk, demonstrates that we truly are a force to be reckoned with.  Sometimes it’s easy to lose sight of that when you are immersed in the trenches day to day. Truth is, we’re all part of something much bigger than ourselves & our own families.

Second, some might expect that an event like the walk would be filled with melancholy people full of sadness and a sense of defeat. Perhaps they envision a large group of self-professed victims, sitting around holding a gigantic pity party. That could not be further from the truth.  The feeling of hope, pride and unconditional love and support is palpable. T-shirts profess team pride, often championing a single child or loved one who lives with autism.  Phrases like, “Autistic Kids Rock” or “I am not a Tragedy” tell the world that though we want answers and a greater understanding of autism, we sure as hell don’t want to be pitied or appeased. We are proud mothers, fathers, sisters, brothers, friends & family of incredibly unique and amazing human beings who happen to have autism. Some may walk for a cure, others to raise money for advocacy, research & intervention, and still others walk simply because they want to stand up and be counted. And when we walk, it is with our heads held high, our chins up and our hearts full.

Third, from the moment that we step into the area where the walk is held, Yael can look around and see kids just like her. So much of her life she lives in the minority. One of the few kids in her school, at her synagogue, in her neighborhood or at her camp, who has autism. But at the walk, it is the total opposite. She sees younger kids, older kids & adults, all living with autism. She gains a greater understanding of the spectrum upon which she lives and gets to meet some of the neighbors who live there with her. It may not sound like much, but to her it is one of the rare & precious moments where she gets to feel as if she truly fits.

Fourth, let’s be honest. It is easy to feel drained as the parent of a child with autism. There is so much to do from advocacy to therapy, helping your child develop social skills and so much more. Sometimes I feel like I am running on vapors and my gas tank is on “E.” After spending a morning at The Georgia Walk for Autism, I always feel like I have been given just the boost of energy that I need to keep on going. I feel empowered, strengthened, emboldened and ready to keep doing what I do. I am reminded why I started this blog in the first place. It isn’t simply to write down my family’s experience with autism, but to try to raise awareness, encourage advocacy, inspire people who may just be starting out on this journey or simply to connect with another human being and let them know they are not alone.  But, I’m the mother of 3, the wife of a busy rabbi, a preschool teacher and a blogger. I don’t always feel like I am doing any one of those jobs particularly well, and when I am running low on time & energy, it gets even harder to strike a balance. While I would never turn down a good massage, a day to myself or the ability to eat tons of chocolate without gaining a pound, none of these things gives me quite the same boost as an advocate & parent of a special needs child, as this walk does.

And finally, I feel as if this walk is our family’s chance to stand together, to give back and to pay it forward all at the same time. We stand together as one team, inspired by our captain, Yael. We are a mother, a father and two sisters who are united in our desire to honor Yael, demonstrate our acceptance, love & pride in the person that she is and the lessons she has taught us. We give back to those who helped Yael get to where she is. We know with each step that we take that she would not have come this far without the devoted educators, therapists, friends and family who have accompanied us on this journey. They are often the unsung heroes, the behind the scenes talent that never take center stage. But we know who they are. We walk for them as well.  And we pay it forward with the money we raise. We help to fund advocacy efforts, research and interventions that are so incredibly important not only for family’s like ours, but for all of those who live with autism and those who love and care for them.

So, if you happen to be in the Atlanta area on Sunday, May 20th you should come check out the walk at Atlantic Station. If you want to join our team, we’d love to have you. The more the merrier. And if the spirit so moves you and you want to support our team, any donation big or small is sincerely & profoundly appreciated. And finally, if you’ve never participated in one of the nationwide autism walks, I sure hope you’ll consider doing it sometime. It’s a beautiful and powerful thing to be a part of.

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=997071&lis=1&kntae997071=49F4EF23B8D14A758048739F70B1B0BE&supId=283471540

Reflections of the Birthday Girl

Life can only be understood backwards, but it must be lived forwards.
(Soren Kierkegaard)

Tomorrow, I will celebrate my 43rd birthday.  I was 33 when Yael was diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) and our family’s life on the spectrum began. That means that I have lived a decade of my life with autism as a constant family companion.

So, what have I learned in that decade?  Well, to begin with, I have learned the importance of good hair dye and a great hair stylist.  Yes, that’s right, believe me when I say that I am fairly certain that life with autism caused me to go prematurely gray. Investing in a good wrinkle cream ain’t a bad idea either!

I have learned that I am far stronger than I ever gave myself credit for. There is a warrior inside of me, always ready to go to battle for my daughter. You wouldn’t know it from the outside, but she’s there.  I have adopted the good manners & pleasant demeanor of the south, but I can get my tough New York attitude on when life requires it! 

I have learned that laughter really is the best medicine.  Life on the spectrum will fill your days with many unexpected twists and turns. You’ve got to fight the inclination to get caught up in road rage, and try to find some humor in the ride. If not, you’ll crash and burn! And nobody wants to see that happen!

I have learned that the big picture is too big for me to grasp. It overwhelms me.  I take each day, week, month and year as it comes. I don’t know how far my daughter will go, but I can see how far she’s come.  Progress on the spectrum must be measured in baby steps, but as the saying goes, “A journey of a thousand miles begins with a single step.” And for every step forward that my daughter takes, autism will surely create some new obstacle down the road that will lead her to take a step back. That’s okay… we have a GPS, and we’ll find another route to get her where she needs to go.

I have learned that patience is not always a virtue I possess, and that I need to work on digging deeper into those reserves, even when time is short and energy levels are low.  Autism can demand a lot of attention at times, but my daughter’s feelings and sense of self deserve even more. I’m going to keep working on that one.

I have learned that you can’t take this journey alone. You need to surround yourself with the love of family and friends. They may not live on spectrum, but you can help them to know, understand and accept your world. And if along the way, you meet people who can’t offer you that unconditional support, you need to part ways and move on. There is no room for judgement on the spectrum. As Kenny Rogers said, “You got to know when to hold ‘em, know when to fold ‘em, know when to walk away and know when to run.”

I have learned that our educational system has a very long way to go in leaving no child behind. It continues to anger, sadden and frustrate me, that I have to fight so damn hard to make our society see my child as worth investing in. She is as full of love, life and potential as any other kid and deserves to be treated as such. I could rant on and on about this particular topic, but I won’t. Suffice it to say, I have learned that advocating for my daughter is a full-time job and there are very few vacation or sick days in the job description. It’s also a position with no formal training and no instruction manual! It’s called learning by the seat of your pants, so be sure to buckle up.

I have learned that stupidity & ignorance can show itself at any time in any place. Somebody will be there to offer unsolicited advice or judgement, telling you all of the things you are doing wrong as a parent.  Try to hold your head up high and answer that stupidity with dignity, pride and self-respect.  And if, on occasion, you need to give stupidity and ignorance a bit of a tongue lashing, well, I’ve been there and I totally get it.

I have learned that we are all entitled to a good meltdown now and again. It can be tiring trying to navigate through life on the spectrum. You make a lot of wrong turns, run into dead ends, need to back up and find another route. Every now and again you’ve got to cry that ugly cry, indulge in a boatload of chocolate, grab a night out with your hubby, your friends or both. If you don’t take care of yourself, you’ll never make it through the journey.

I have learned that I can’t parent all three of my daughters in the same way, and that sometimes Yael needs more than her sisters do. It isn’t always fair, I get that! But, I love all of my children with equal measure and even if I can’t always dole out equal amounts of time and energy, it doesn’t change that fundamental fact.  I am only human, and there is only one of me, so I have to be more forgiving of myself when the slices of pie don’t always measure up (or when that pie has to be store-bought, instead of homemade).  It won’t always be Yael that gets the largest piece, that’s simply not how life works. I need to make sure all of my girls know that.

I have learned that George Michael was right when he said, “You’ve got to have faith.”  Autism is a maze, and it isn’t always easy to find your way, in fact at times it is downright hard. My faith continues to be my compass and, no matter how lost I feel, it somehow guides me back home.

I have learned that motherhood is unpredictable, even without a special needs child.  Autism was never part of my plan, but it is part of my reality. So, I can choose to get caught up in the fantasy of the life I dreamed of, or embrace my reality and live it to its fullest potential. I choose the latter.

I have learned that I don’t give a crap what label my daughter has to be given, nor do I care what other people think of that label. Autism is not a dirty word. “My daughter is autistic!”  There, I said it. So what?!  I’ll shout it from the rooftops too. She is also funny, kind, compassionate, sensitive, smart, brave, generous and beautiful. As a matter of fact, on this, the day before my 43rd birthday, let me proclaim that when I grow up, I only hope that I can be half the human being that she is. If I can measure up to that, than I am doing just fine.

“Don’t go through life, grow through life.’ (Eric Butterworth)

 

 

Miracles

“The only whole heart is a broken one because it lets the light in.” (Rabbi David Wolpe)

Tonight, we will celebrate the fourth light of Chanukah. As we light the chanukiah, commemorating the miracle of the oil, our family will also stop to reflect upon our own little miracle. Our youngest daughter Noa will celebrate her heart-a-versary, the day that the doctors at Yale-New Haven Children’s Hospital saved her life.

I remember it as if it were only yesterday. There are moments in your life that become seared into your memory. December 23, 2002 is forever marked in mine. Noa was only 3 & 1/2 weeks old.  She was frail and weak, born full term at only 4 lbs. 15 ounces. Now, she was down to 4 lbs. 11 ounces. Simply to eat, required more energy than her little body had to give. She had been on blood pressure medication and diuretics since her diagnosis only 3 weeks earlier. Brand new to this world, and already given syringes full of medications designed to save her life.  No more than two-hour intervals passed in between her feedings. She drank from a preemie nipple, too weak to suck her bottle through an infant nipple. Her formula did not follow the directions on the box. Instead, we mixed  double the formula powder with half of  the water, trying desperately to increase her calories, fatten her up and get her a little bigger, a little stronger, for the open heart surgery she would have to endure. It hadn’t worked.

Our baby was in full-blown congestive heart failure by the time we handed her over to the anesthesiologist at the hospital on that cold, dark winter morning. As we waited for them to take her, I tried to memorize her face, her smell, her touch, her everything, before they took her away from me and into the operating room. What if she didn’t come back to me?  Yes, I knew that we were fortunate that her heart defects were the “most common” types of heart defects. We were reminded constantly that her doctor performed this type of surgery “all of the time.” But he didn’t do it on my baby every day.  There was nothing common or routine about this to me,  to my family, to my precious little girl, so new to this world and already fighting for her life.

I placed her little body and her life into their hands and I watched as they walked away. I waited until they were out of sight, and then my husband and I walked through the doors to the waiting room and I fell to my knees crying.  It was a primal kind of fear & anguish that is hard to describe unless you have lived it, and I pray you never have to. You never fully recover from experiencing that kind of fear, it leaves a scar.

They put Noa on heart lung bypass and she was on that operating room table for just over 7 hours. It was only later, after she had recovered and begun to grow stronger, that my mind even allowed me to think about her lying there. I would wake up crying and screaming from nightmares so vivid that I could barely catch my breath. It was my own form of post traumatic stress, my brain first processing what it could not allow me to take in during those earlier days.  When the doctor came out of the operating room,  he told us that our baby girl actually had an additional heart defect that they found when they went in. One little baby, her heart so very small, 3 congenital heart defects. He told us that she was one of the sickest babies he had ever operated on, telling us she looked as if she had “wasting syndrome.” It was true. She was skin and bones. Not an ounce of baby fat to be found on her weary little body.  And then he spoke the words that remain forever etched into my brain. “You were only days away from losing her.” Days we didn’t lose due to the watchful eyes of her doctors and I believe, by the grace of God as well.

Have you ever wondered how you might say thank you to someone for saving your child’s life?  I guess I should have thought about that, in the weeks leading up to Noa’s surgery. I mean, I had been given some time to prepare my words, as he labored with his team to save my baby girl. But, as Dr. Gary Kopf, cardiothoracic surgeon, walked us through the surgery, there were so many things going on in my head, that I simply couldn’t get my thoughts straight.  When the time came, I simply placed my hand on his, looked him tearfully in the eyes and said, “thank you.”  It was all I could get out, though he deserved so much more.

When we saw her in the PICU, we began to look first, as someone had told us, at her feet. That was the only part of her that did not have wires, tubes, bandages or blood.Then, slowly, we took it all in. Our little Noa, only a few weeks old, lying in that giant hospital bed, not breathing on her own, sedated, hooked up to tubes and wires, under plastic heating blankets and surrounded by nurses, doctors and so many machines. It’s not supposed to be like this, I kept thinking. I kissed her forehead and whispered to her that we were there with her, that she wasn’t alone. I told her over and over again,  that we loved her and we would be with her so she shouldn’t be afraid.  It was my mantra, spoken as much for myself, as it was for her.

Those first 24 hours were critical they told us. And as we settled into our first night in the PICU, the constant beeps and alarms of the machines hooked up to our little girl, terrified us. It was the nurses who got us through. They took care not only of our daughter, but of us, so calming & reassuring, so human. We were to take turns sleeping that first night. I sent my husband off for the first shift, in the little sleeping quarters off of the PICU. I never woke him for my turn, I couldn’t leave her. I lay my head as close to her little body as the machines, tubes and wires allowed, and I stayed with her. I was her mother, and I simply couldn’t leave.

In the morning, when my husband came in,  the doctor’s arrived to take Noa off of the ventilator and see if she would begin breathing on her own. It was the first test in her recovery.  Thank God, she passed and began to breathe on her own. On 12/24/02 at 10:30 AM her eyes opened and staring into those precious baby blue eyes, were my tired, weary, puffy, tear filled brown ones. I didn’t know it at the time, but the nurse had snapped a photo, telling me that one day I would want to have that moment recorded. She was right. My baby tried to cry, she was frightened and in pain, but her throat was swollen from the ventilator and all that came out was a primal whisper of a cry that broke my heart. How helpless I felt unable to ease her pain fear in that moment. I wanted to hold her, but I couldn’t. So I stayed where I was, looked her in the eye and told her over and over again that I loved her, that she was not alone and that it was all going to be okay.

We stayed a week at Yale. My husband and I took shifts staying with Noa, and returning home to shower, sleep and spend a few precious moments with our other daughters. Noa Greene, the little Jewish baby with the Hebrew name, daughter of a rabbi, was visited by many Christmas elves as she lay in the PICU on Christmas. It was a beautiful thing to witness the stuffed animals, handmade quilts and little baby toys that were so generously donated to the hospital, and appeared on her bed.  Faith, no matter the denomination, can be a true wonder to behold. Miracles can come in all shapes and sizes. They can be found in the kind acts of volunteers who cheerfully hand out gifts to children, or who donate a catered Christmas dinner for the staff and families spending the holidays in the  Pediatric Intensive Care Unit. They can be found in the healing hands of doctors and nurses and in the love and support of family, friends & community. Miracles can be found in ancient stories of old, in the story of oil meant only to last for one night, that burned for eight. And, miracles can be found in the heart of a little girl who will celebrate her heart-a-versary tonight, a strong, vibrant and healthy child, whose story continues to unfold with each & every blessed day.