It’s a fact: we are all unique.
Some are fortunate to be more so than others, but in ways you might not imagine. It all comes down to your perspective on these differences. What you and I might view as less than best, may actually be more than we could even comprehend. A single life, which at first blush seems challenged and difficult, viewed through another lens, and with an open heart, can be the brightest light you have ever seen.
I am Mark Brodinsky and this is The Sunday Series.
The Sunday Series (70): I Am Your Child
I am your child
Wherever you go you take me too
Whatever I know, I learned from you
Whatever I do, you taught me to do
I am your child
“This is our family and this is what our family looks like. I don’t know what challenges are ahead for Ava and Sadie, but with Millie we know what challenges are ahead of us. I wouldn’t change it for a million bucks.” – LaurenPerlin
Millie is the middle daughter belonging to Lauren and Ryan Perlin and she is different, but knowing she would be came as a complete surprise to the Perlin family. “We didn’t know”, says Lauren. “It was a completely normal pregnancy and delivery, but just two days before Thanksgiving, as soon as I gave birth, we knew her eyes didn’t look right. The doctors said it was nothing. We had been through all the testing, no one every contacted us, nothing was outside the normal range. I called in Melinda Elliot, a neonatologist I knew from Garrison Forest School when I worked there and when she saw Millie she said ‘I see what you said, I am concerned too.'”
The concern shortly became a reality. Though no one had picked up on it throughout the entire pregnancy, as it turns out, Millie was born with Trisomy 21. That’s the scientific reference, but to put in terms we can all recognize, Millie was born with the most common birth defect in the United States: Down Syndrome.
The shock and surprise rocked the Perlins world – but not because for one second they wouldn’t have the capacity to think different, or to love unconditionally, simply because they didn’t know it was coming. But it was Lauren’s friend Melinda, who also has a son with special needs, who put it in perspective. Lauren says Melinda told her, “you didn’t know, and you can be sad for what you thought you were getting, but at some point you will accept the fact that it’s different and it’s still beautiful. We also had my oldest daughter Ava at the time, who wanted to come see her new baby sister. When Ava came in to the hospital to see Millie for the first time, it truly became real for us and we knew it would be our role and responsibility to educate others. We immediately sent an e-mail to about 600 people to share the news.”
“Looking back on it now it’s easy to say I’m glad we didn’t know, (about the down syndrome), because I would have had a pregnancy full of worry about the health conditions that can come along with down syndrome, but I delivered a healthy, beautiful baby girl.”
A blessing in disguise.
Lauren says, “the response we got after we sent the e-mail was great, we felt really supported by friends and family who stepped up to the plate. For a long time I was worried about comparing Millie with other children her age, but friends like Dori Popkin Chait, have been incredible. It made our friendship stronger. Dori has a daughter, Samara, who is only twelve days older than Millie. Samara and Millie shared a first birthday party together. She doesn’t treat Millie like she’s any different. We believe for the most part the expectations for Millie, especially when it comes to behavior, should be the same.”
But there are differences and while what makes Millie different is beautiful, it is also a life-long challenge. Millie is now 4-1/2 years old and Lauren says you have to hold back when comparing her to typical kids. “For example, right now it’s end-of-year report cards”, says Lauren.
“I know Millie is a joy to have in class, but that aside, she is not writing her name yet. Physically she keeps up, but we are starting to hit the academic stuff. She can do the alphabet and recognize letters, but she really can’t form words or spell. But we don’t focus on the negative, we focus on the positive. We have a great occupational therapist at Mt. Washington Pediatric Hospital who works really hard with Millie every week.”
Millie gets a lot of therapy, privately and with county services. There is no set prognosis for someone with down syndrome, each case is different, each human is unique. Lauren says, “there are a fair share of doctors out there who say she’ll never read past a fourth grade level and other things like that, but we don’t get a lot of it. One special doctor, George Capone, who is Director of the Kennedy Krieger Down Syndrome Clinic and Research Center, believes in these children and what they can do and what they can accomplish. And we are hearing more about kids with down syndrome being fully included in schools, rather than in a special ed class. We are lucky. Millie probably says a thousand words, there are kids who say no words. Lucky for us Millie has managed to stay ahead.”
Progress doesn’t come without hard work, dedication and devotion from everyone involved in Millie’s life from the therapists to her family. Millie didn’t walk until she was 27 months old. Lauren says it took countless hours between the therapists, us, her sister, Lauren and Ryan’s own parents who practiced and practiced with her walking and the teaching her the skills involved – balance, coordination, strength in her legs, it was a total team effort.
And I am your chance
Whatever will come, will come from me
Tomorrow is won by winning me
Whatever I am, you taught me to be
I am your hope, I am your chance
I am your child
Lauren says, “for Millie every single milestone she has accomplished in her life, walking the stairs, drinking from a straw, getting potty-trained, Millie has had to work twice as hard, or more than most kids. Some things come easy to her, some things are hard for her, but she’s a fighter and that will serve her well.”
What pushes and inspires Millie as well is her younger sister, Sadie. And the Perlins are thrilled they decided to have another child after Millie, a decision that was easier than they thought. “We always wanted to have three children”, says Lauren. “We weren’t going to stop with Millie and there was a whole group of people who said do it, because kids with down syndrome benefit from having someone younger than them pushing them. We didn’t have Sadie for the benefit of Millie, but Sadie is the best thing for Millie. Millie is like her mom, though in some respects they act like twins. But we are very lucky all of our girls get along with each other.”
As any parent knows the highs and lows of raising a child, any child, are what make life unpredictable and unique. With Millie there is a special lesson to be learned. Lauren says the greatest joy so far was when Millie finally learned to walk, which took nearly two years. But the low is a consistent one – every single time someone uses the “R” word.
“It happens all the time”, says Lauren. “Just the other day I was at the grocery store and Sadie, (now 2-1/2), was having a meltdown because I wouldn’t give her M&M’s. The woman near me says, ‘when my son would act like that I would tell him I’m going to put a helmet on you and send you out into the street so you can act like other retarded kids out there. If you’re going to act like a retard, I will treat you like one.”
Lauren says the pain of that word is immeasurable. Millie was not with Lauren on that trip to the grocery store, so the woman had no idea that Lauren had a daughter with down syndrome. But she says this is the kind of thing that happens all too frequently. Lauren says people aren’t trying to be hurtful, they just don’t get it. And the Perlin family would love for this kind of stigma to end.
Lauren says people come up to her and her family all the time to tell her stories about their own family members or friends who have down syndrome, but she says she’s not really interested in hearing about “limitations” because the Perlins have high hopes for Millie. “She’s been in therapy since she was six weeks old”, Lauren says. “She runs, she jumps, she is potty-trained, she goes to regular class at Beth El. She is amazing.”
The word amazing comes up quite frequently when Lauren talks about Millie, or any of her girls. She says she and her husband Ryan recently shared Millie’s diagnosis with their oldest daughter Ava, who is now 7. Lauren says Ava got it – she understood why Millie can’t ride a bike yet, or talks differently, or goes for special training. It all made sense to Ava. Lauren says Ava has never looked at Millie any differently and she is super-protective of her little sister.
And then there is Lauren’s husband, Ryan. “Ryan is the stronger of the two of us”, says Lauren. “Millie’s birth kind of rocked all of us, but Ryan stepped up big and said let’s take each day as it comes. The moment Millie was born, I wanted to see what my life would be like five years from now, but he said let’s take it day-to-day. He was so good at saying we have to live in today, we will not compare Millie, all we can do is take it one day at a time. He had a special way of helping me cope with something that was really scary and really big. It has made our marriage stronger.”
Strength is what the Perlin family puts on full display, everyday. Their commitment to Millie and all of their girls is unwavering. Lauren says Millie gets more therapy than maybe most kids with Down syndrome, but it’s because they want her to have the best shot at this life that she possibly can. Lauren has become a model in the community with her volunteer efforts and advocacy for those with down syndrome. She donates her time at the Mt. Washington Pediatric Hospital where Millie gets a good deal of her therapy and Lauren recently chaired an event there to raise money for the hospital, an even attended by more than 600 people.
“For me to get up there and share Millie’s story with all these people who interact with her is the best thing I could do for her. I think it’s safe to say this is not what we expected, but that doesn’t minimize the love, or the fact we wouldn’t change it in a million years.”
Whatever I am, you taught me to be
I am your hope, I am your chance
I am your child….
Until next time thanks for taking the time,
Mark Brodinsky, Author, Blogger, Speaker, Emmy Winner, USHEALTH Advisors (http://www.ushagent.com/markbrodinsky)
Author: The # 1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
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