Parents

Photo Series Exposes The Joy And Heartache Of Raising Kids With Special Needs

The series is titled 'Defined by Our Hearts.'
09/18/2015 02:26pm ET | Updated September 21, 2015

Photographer Natalie McCain has made headlines for her "Honest Body Project" -- an empowering collection of photo series that feature moms in a stripped-down state, discussing parenthood and body image. The latest photo series in the project focuses on a particular group of parents: moms of children with special needs.

Titled "Defined by Our Hearts," the new series shows six mothers posing with their children and sharing their stories and thoughts on parenting kids with disabilities.

The Honest Body Project / Natalie McCain
"Jillian is a smart, beautiful, determined, kind-hearted, sweet, and fun-loving little redheaded girl. She loves going to school, swimming, singing, dancing and playing with her four older siblings. She has taught me that perfect is what you make it and to look for the good even in the darkest of situations. I no longer see the Down syndrome. I just see Jillian. And there isn’t anything in the world that I wouldn’t do for her. She is the child that I had always dreamed, hoped and wanted. It just took me a little while to get there.” 

The photographer told The Huffington Post that she also hopes "Defined by Our Hearts" resonates with other moms of kids with special needs and inspires all parents -- regardless of their child's level of ability. "I hope that it helps mothers whose children are typically developing to start conversations with their children on how amazing these kids are and to be more understanding," she said.

"Don't hush your child when they have questions about another child's special needs," the photographer continued, adding that her 3-year-old son attends a special needs school for sensory issues and speech delays. "I've had so many children ask me, or my son, why he sounds like a baby," she said. "I hope by me modeling a healthy response and reaction to these questions, it will give him the confidence to not be embarrassed as he grows. I never want him to feel that he is less than others just because he has a hard time with his speech."

As with her previous photo series, McCain photographed the moms having open and honest conversations in their underwear -- to empower them, "help normalize the natural body" and "paint a better picture of motherhood," she said.

"While the mothers may be speaking about their children, the series still focuses on the mothers' lives, feelings, bodies, and general motherhood," she added. "When you feel more confident and have a healthy body image, this positively affects all areas of your life."

The series title, "Defined by Our Hearts" comes from one of the moms' quotes about her son, which stuck with McCain. The photographer told HuffPost, "We should all be defined by who we are, how we love, how we live our lives, rather than the disabilities we may have."

These captions have been edited and condensed. Visit the Honest Body Project website to read more about these moms and their families.

1
The Honest Body Project / Natalie McCain
"Jillian looked like my other babies; she was beautiful. She had sparkling blue eyes, vibrant red hair like her siblings and fair pale skin, but all I could think and see was her unconfirmed diagnosis of Down syndrome. I didn’t want to see anyone or talk to anyone. I didn’t want anyone to know Jillian was born. I just wanted to close my eyes and open them to find things different. That wasn’t the case. Family and close friends came, and most didn’t know anything was wrong until they were told."
2
The Honest Body Project / Natalie McCain
"I knew I loved her and wanted her but didn’t know how I was supposed to care for her. Leading up to her birth, I had all these hopes and dreams of the 'perfect' daughter. And at that moment, I was unable to see her perfection and feared the unknown. I spent the next few hours trying to figure out how I was going to get through, when in came our nurse, Kim. She spent a long time talking with me. The words she said that stand out most were, 'treat her like your other babies; she is more like them than she is different.' By the time she left the room, I knew in my heart that I was going to make it through.”
3
The Honest Body Project / Natalie McCain
“At six months old we started to realize one of our daughters wasn’t developing as she should. She wasn’t moving very much and stayed curled up in a ball like a newborn. She was diagnosed with hypotonia, which is low muscle tone. She basically doesn’t make muscle the same way we do and will always have a lower amount of muscle compared to other people her age."
4
The Honest Body Project / Natalie McCain
"As she developed she encountered many more hurdles with her physical limitation, but with the help of physical therapy was able to catch up to her sister. She will never be an athlete but she can do most things other kids can do, sometimes just a little differently.”
5
The Honest Body Project / Natalie McCain
“Even though her hypotonia makes her tire quickly when running and jumping with other kids she never lets it stop her. I can see she is pushing it past the point her muscles can take, but she never gives up or stops. This causes her chronic pain. The pain she has is similar to the burning muscle pain you get when you work your muscles too hard. Most nights she cries because it hurts so badly, and it kills me to see her in so much pain and not be able to do anything about it. But she surprises me every day. Even after going through this every night, it doesn’t stop her from pushing it again the next day just to be in pain again.”
6
The Honest Body Project / Natalie McCain
“Bethany has worked so hard to get where she is today. She never gives up, and if something is hard or she can’t do it, she still gives it her best every time. If she can’t do something she just says, 'Someday I will get it Mom.' She inspires me every day. With everything we have been through, all the ups and downs, I still wouldn’t change it. Her autism, hypotonia and sensory processing disorder make her the wonderful, intelligent, funny and loving person she is. Her disabilities are not bad things about her and I never want her to feel that way. She wouldn’t be the person she is without them and that person is amazing. I love her so much and always want her to stay as strong and persistent as she is today. She can do anything, and I hope she never listens to anyone who says she can’t.”
7
The Honest Body Project / Natalie McCain
“My children are happy, funny, energetic and beautiful. All I ever wanted in life was to be a mother. Our children were going to be well behaved and independent, no co-sleeping or picky eaters. Our son came along, and everything we thought we knew was gone. We thought something was different about our son, but the doctors kept telling us everything was fine.”
8
The Honest Body Project / Natalie McCain
“At three and a half our son was diagnosed with ADHD and Autism Spectrum Disorder. He started therapy three to four days a week, and we settled into our new life. Around the time our daughter turned four, she started having more behavioral issues and was diagnosed with ADHD. At five years old, she was diagnosed with Autism Spectrum Disorder, and at five and a half with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).”
9
The Honest Body Project / Natalie McCain
“With PANDAS our daughter can do well for a while, but when she gets sick, or even exposed to certain things, she will start having severe behavioral issues again. She will have increased anxiety, OCD, verbal tics, hyperactivity and rages.”
10
The Honest Body Project / Natalie McCain
“I worry about my children all the time. I am confident they will grow up to be functioning members of society, but I worry about how difficult the road getting there will be since they are different.”
11
The Honest Body Project / Natalie McCain
“Madelyn is a smart, happy, hardworking, active little girl who enjoys swimming and gymnastics. She loves animals, especially cats, and wants to be a veterinarian when she grows up. Nicholas is an energetic, happy, and great with electronics. He loves playing on his iPad or computer and also enjoys tennis and swimming. He wants to be a video game designer when he grows up.”
12
The Honest Body Project / Natalie McCain
“Around six months old my son started having what appeared to be 'spasms.' Eventually, we received a diagnosis: Infantile Spasms, caused by two strokes that occurred in utero. It felt like a bus hit me. At that moment I was in complete shock. How could this have happened? Why Tommy? Why this happy little baby who has brought so much joy into our lives? Is there a cure? How do we fix this? What happens now?"
13
The Honest Body Project / Natalie McCain
"Ten months later, Tommy still has spasms. He’s being treated with three different anti-epileptic medications. Surgery isn’t an option because he has two strokes and they can only disconnect one area of his brain. He’s in three different types of therapy, and he sees his neurologist every other month.”
14
The Honest Body Project / Natalie McCain
“I hope my son’s future is filled with love, happiness, and good health. Despite his disability he is a very smiley, loving, and cuddly baby. He’s very healthy, too. He’s always seen happiness and love around him and I want nothing more than for him to always feel that."
15
The Honest Body Project / Natalie McCain
“Regardless of what’s happening with Tommy, he is our pride and joy. He’ll never stop smiling or laughing no matter what he goes through. He’s been through more than I ever have and he’s still fighting. He is the most precious miracle I have ever seen. If I had the chance to change what happened to him, I wouldn’t have. He has taught us so much more than we could’ve ever learned on our own or through someone else. He’s taught us to appreciate all the little things because some people will never have them. He is my perfect angel and I will never ever stop fighting for him and for a cure for Infantile Spasms.”
16
The Honest Body Project / Natalie McCain
“Our son has Right Hemiparesis (a type of Cerebral Palsy) due to an in utero bilateral stroke. The older he gets, the more people are able to see his developmental delays. We have been battered with questions from strangers regarding his condition. At one point, I thought about lying about his age because I was so sick of people’s inappropriate remarks when they noticed he wasn’t doing age-appropriate things. The first year or so of his life, I was not friendly when asked prying questions such as 'what’s wrong with your baby?' However, I realized the effect that will eventually have on my son. I realized that I hold the power to build his self-esteem or crush it. I realized if my son sees me react in a negative way, he will more than likely interpret that as if there’s something wrong with him. And there is nothing wrong with my son. Nothing.”
17
The Honest Body Project / Natalie McCain
"One of the hardest things for me parenting our son was finding balance between being his therapist and being his mother. The same doctor that lectured us about high divorce rates also lectured us about love being the most important thing we could ever do for our son. I kept thinking 'duh, of course weʼll love our son,' but what she meant was not getting so wrapped up in his progress that we didnʼt take time to just be his parents. I lost sight of her words, and got really wrapped up in research and therapy. I just desperately wanted to help him. I did reach a breaking point and felt devastated when I finally realized I felt more like a therapist than a mother. It was then that her words came rushing back to my mind. It helped me find balance. It helped me accept his delayed timeline. When acceptance finally entered, is when I finally began to feel like Cassʼs mommy.”
18
The Honest Body Project / Natalie McCain
“The questions about my son that I never mind are the questions from other children. Please, donʼt silence your children when they ask about a child that has special needs. Answer their questions honestly, or let the other parent answer. Donʼt pull your child away or tell them that itʼs not nice to ask. If we ever hope to raise a generation of more compassionate and empathetic people, we need to start while they are young. Why not help normalize differences? If you pull your child away or silence them, you are creating more fear of the unknown and therefore a bigger disparity between those children that are typically developing and those that have special needs.”
19
The Honest Body Project / Natalie McCain
“My son is not defined by his needs. He is not a 'special needs child.' He is a child… with special needs. He is defined by his heart, by his sweet demeanor, by his free spirit, by his playfulness. His “needs” will always be secondary to the person he is. I view all children as unique and having their own set of specific needs. I find it incredibly sad that people are defined and categorized by their ability level. I want to fight the world for him. I know that’s not a good plan, but I will always be his biggest and best advocate.”
20
The Honest Body Project / Natalie McCain
“When a parent has never experienced having a child with special needs, I think they tend to feel sorry for those of us that do. I will tell you very clearly, do not pity us. There is something magical about watching your child meet a milestone that many thought he wouldnʼt. I promise you that we are all the same when it comes to loving our children. We think our child is perfect. Our love for our child is immense and unbreakable. Yes, there is a period of grief for the original dream of parenthood, but new and amazing dreams are hatched and lived. Itʼs quite extraordinary.”
21
The Honest Body Project / Natalie McCain
"When the call came that we had, in fact, screened positive for Down syndrome the world crashed around us. My husband and I went through a long grieving process for the son we thought we were having and moved toward the son we were going to have. We cried a lot. We got mad. We got angry. We got jealous. I had a hard time watching other pregnant moms walk around in a cloud of bliss and what I felt was ignorance. They had no idea would 'could' happen. I did."
22
The Honest Body Project / Natalie McCain
“And then the 'what ifs' moved in. The constant Googling of what could happen. It never ended. It was overwhelming. How did we tell people? Hearing the 'I’m sorry' from friends and strangers. Sorry for what? Did you insert the extra chromosome? Then the 'God never gives you more than you can handle' started. Really, God decided we deserved this? Followed by the 'Maybe the doctors are wrong.' OK, two tests and multiple ultrasounds later, we are not holding our breath that we got the wrong information.”
23
The Honest Body Project / Natalie McCain
“As we continued through our pregnancy, we decided it was time to announce our son through social media. We named our son Eli and announced how he is 'extra special' to the world. We could finally breathe easier and were able to accept the diagnosis after the announcement. In the meantime, I joined multiple support sites where everyone shared the same fears I had. The same stories. And then I realized it was going to be OK.”
24
The Honest Body Project / Natalie McCain
“He was a superstar from the get-go and we were completely in love. I didn’t -- and I still don’t -- see Down syndrome when I look at my son. I see Eli. I see a happy, loving baby and soon to be one-year-old. We’ve been so lucky. Sometimes I look at Eli and smile as big as he does. Sometimes I look at him and I’m filled with sadness that his life will be 'different' and 'difficult.' But Eli has brought so many smiles to everyone that meets him. He is exactly what our family needed, a bright spot to the beginning and end of our day.”
25
The Honest Body Project / Natalie McCain
“My four year old, Leo, is too young to understand that Eli is 'different,' so we haven’t even mentioned it. We will when the time comes. I remember Leo seeing a child in a wheelchair and asking about him. It was the first time we were able to start to talk about differences. And I certainly didn’t shy away from talking about it. It was a chance to start paving the way for the day we start to have those conversations about his brother. Eli may be only 11-months-old but he has already given so many people joy. He is our 'Zen' baby. When I bring him to work he is loved by all and helps bring the blood pressure and stress levels down of everyone in the office.”

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