This a series for The Honest Body Project featuring mothers who have children with various special needs.

Six loving mothers are featured in this series with their amazing children. The series is titled “Defined by our hearts” because children with special needs are so much more than their disabilities.  They are strong, amazing warriors that have beautiful hearts.

-Natalie McCain (Creator of The Honest Body Project)

www.thehonestbodyproject.com

“In December 2010, we took a family trip to Sea World and it was there my Mom said, “I think we need another baby”. The statement sparked a flame, that later turned into my husband and I deciding that we would like to have another baby. That spark however was short lived. January 19, 2011, my Mom was diagnosed with brain stem cancer, which changed my focus of having another baby to finding a cure for her. We traveled near and far, only to realize we probably weren’t going to find that cure. As time moved by as it always does, my husband and I revisited the idea of another baby. We found out at the end of March that we were “expecting”. I had hoped that this news would bring joy to our current situation however that wasn’t necessarily the case. Our family was still on an emotional roller coaster. And my Mom was upset at first because she knew she wouldn’t physically get to meet and hold this baby. A little time went by and she seemed to be happy for us. As her days grew shorter, we discussed little “girl” names. We decided on “Jillian” as we also had a “Jack”. June 25th, before we got around to discussing little “boy” names, she passed away. I prayed that we would have a little girl and in late July, we found out that we were expecting a baby girl that we would call “Jillian Carol”. The first part was the name my Mom and I came up with and the middle would be after my Mom. Everyone was elated!”

“It was exciting to be having another girl since we already had three boys. I only had a brother, so I was excited for our daughter to have a sister. Jillian was born on the morning of December 22, 2011 via C-section. All seemed well after delivery. The nurses brought Jillian over for me to see and she appeared just as my other babies did. She had red hair, skin was pink and her eyes were shut with the “eye goop”. My husband followed Jillian to the nursery where they were going to finish cleaning her up while the doctor finished my C-section. Once my operation was finished I was to be transported back to my room. I passed the nursery where the nurses held Jillian up for me to see. Again, she looked like my other babies. Nothing seemed out of the ordinary until; a crying husband met me. I knew Jillian was okay, I was okay and he was okay, so I thought to myself “what’s wrong, why is he upset and crying?” Life changed a few moments later. No sooner was I back in my room, and in came the Neonatologist. She asked, “Do you know what Trisomy 21, otherwise known as Down Syndrome, is?” Being a Registered Nurse, I had learned about the chromosome abnormality while in nursing school. I answered “yes”. She continued on with “I feel your daughter has this based on my physical examination”. At that point, I didn’t know what to think. I thought “why me Lord, why me. Haven’t I been through enough this past year?” Not too much later, Jillian was brought in to us. 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. Once everyone was gone, and it was just Jillian and I, 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 was there for the birth of three of our other children). 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.”

“Five days later, we received confirmation that Jillian did indeed have Trisomy 21, otherwise known as Down Syndrome. I knew she did, however all of me wanted the DNA test results to say that everything was normal. Now knowing that she did, I didn’t waste any time, it was time to switch gears. I researched the local agencies and at a month old Jillian started to receive therapy services. I knew that I wanted her to be the best that she could be and, in my eyes, that was making sure that she received the best care and every possible therapy available to her. Jillian grew and grew. She accomplished milestone after milestone. It may have taken and will continue to take a little longer to accomplish the same milestones, but she will get there with her own determination and our support. She was more like my other children than she was different. In all actuality, she was probably the easiest of them all. She didn’t cry and was an awesome sleeper. It didn’t matter what was going on, she was just a “go with the flow” kind of girl. Fast forward three and a half years later and Jillian is a smart, beautiful, determined, kindhearted, sweet, and fun loving little red head girl. She loves going to school, swimming, singing, dancing and playing with her 4 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 her. She is the child that I had always dreamed, hoped and wanted. It just took me a little while to get there.”

“The best advice I could give another parent is to love and treat your special needs child just as you would your typical child. They are more alike than they are different.”

 

“All children with disabilities are special in their own way and if given the opportunity can teach others many valuable lessons. I feel children with Down Syndrome are more intelligent than they are given credit for. My Jillian is super smart and there doesn’t seem to be anything that she doesn’t try to accomplish. It may be difficult and take her a little longer, but she can do whatever she sets her mind to.”

“On February 13th 2014, I walked into the hospital in fear that my son was no longer alive. It was pretty late in the evening and I had been so busy throughout the day that I didn’t realize until I sat down that night that my son hadn’t moved all day long. I went into an immediate panic and my fiancé and I rushed to the hospital. After about an hour more of dreadful waiting, the doctors determined Tommy was in distress and they needed to induce me. On February 14th, 2014, Valentine’s Day, I gave birth to a beautiful and healthy little boy we named Thomas III. Throughout our hospital stay everything went well. He did great on all of his newborn screenings and they sent us home 3 days later. They sent us home not knowing what was to come over the next year. I did everything right throughout my pregnancy, or at least I thought I did. The doctors still tell me it’s not my fault, but every day I live with the guilt of what could I have done differently?”

“Around 6 months old my son started having what appeared to be “spasms.” They were random and not very frequent so I didn’t think anything of it. Neither did his original pediatrician who completely ignored me whenever I told her about these “spasms.” By the time my son was 10 months old he wasn’t reaching any milestones. He had yet to roll all the way over from back to front or front to back. Tommy had very little head control and wasn’t able to sit unsupported. He was also doing way more with his left hand than with his right hand. His pediatrician told me I had “a lazy baby because I do too much for him.” Uhm, what?! Finally I had enough, I switched doctors and this one actually listened to me. We had our initial visit with her and she saw one of Tommy’s “spasms” occur. She referred us to a local neurologist who told me my son has Cerebral Palsy at best. Again, uhm, what?! The next day I received a phone call from the neuro we just saw and he told me to rush my son to the Arnold Palmer Hospital emergency room. He explained he had doctors waiting for us up there and it was crucial to find a diagnosis for Tommy, so off we went. All of this took place the week of Christmas 2014. My son spent his first Christmas in a hospital. We were there for a week, doing test after test, to determine what was happening with our son. Finally, two days before Christmas they had 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? Well, 10 months later Tommy still has his spasms. He’s being treated with 3 different anti-epileptic medications. Surgery isn’t an option because he has 2 strokes and they can only disconnect one area of his brain. He’s in 3 different types of therapy, and he sees his neurologist every other month.”

“If we don’t find a “cure” for his spasms then they will progress into a different form of epilepsy. He will get worse; he won’t develop properly or reach his milestones. He is so debilitated that he still can’t even roll over at 19 months old. 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.”

“My advice to families with a child who has special needs is to always look at the accomplishments and progress being made. Sometimes great things happen, and other times not much. But never lose hope. It gets really difficult at times but it’s all the progress that’s actually being made that counts.”

“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. Before I found out my son’s condition I had no idea it was possible for a baby in the womb to have a stroke. To me, it’s a miracle my son is alive. I don’t feel that enough research is being put into different medications that can really help epileptic patients all over the world. 65 million people are living with epilepsy. There are better ways to fight this.”

“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. He is not walking yet. He has no words, though he does understand almost everything we say to him. Not only are his delays becoming more obvious as he ages (he’s 2 years old), he also wears a splint on all four limbs and uses a therapy grade walker. His right arm is noticeably injured due to an additional in utero clot that left him with an 80% chance of amputation. 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.”

“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.”

“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 don’t view my son as having what society categorizes as “special needs”. It is not because I’m in denial. I am a well-grounded and aware person. I just happen to view all children as unique and having their own set of specific needs. I know that mindset is not well accepted in society and no matter how hard I might fight for my reasoning; I know my son will be lumped into a category. I just happen to 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.”

“My husband and I were lovingly lectured by a doctor in the NICU regarding the high divorce rate among couples that have a child born to them that has extra challenges. Honestly, I can see how it could rip a marriage apart, which makes me all the more thankful that I have an amazing partner. Having our child has made us only closer. We have flourished amongst the emotional devastation. We have thrived in the face of trauma. I have never been so nurtured in my life as I have by my husband. My first year postpartum was dark. I suffered through PTSD and such deep dark holes that I didnʼt know if Iʼd ever climb out. He pulled me out over and over with steadfast persistence. He met every single emotional need…which ultimately helped me meet our sonʼs needs. 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 didnʼt fully grasp what she was saying then. 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.”

“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.”

“In all of the shuffle of becoming a parent and meeting my sonʼs medical and therapy needs, I have placed my body aesthetics on the back burner. I no longer look anything close to my once muscular body. I still commit time a few times a week to be sure I stay active for my mental and physical health, but I just do not have the many hours each week to dedicate to working out like I did pre-baby. And itʼs ok. I am doing something much more important with my time in this season. I do take my health seriously, but being soft is no longer my worst nightmare. Itʼs amazing how my views on body image have shifted since giving birth, almost losing our son, and suffering through significant emotional trauma. It has really shifted my perspective on my body image and rearranged my priorities…and surprisingly, Iʼm immensely thankful for the shift.”

“My hopes for his future are to feel fulfilled and to experience love…to give it as much as he receives it. As for dreams though…we will let him dream for himself. We will support him through his dreams. We will encourage him to achieve whatever he desires. The sky is the limit…”

“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 cosleeping 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.”

“At 3.5 our son was diagnosed with ADHD and Autism Spectrum Disorder. He started therapy 3-4 days a week, and we settled into our new life. Around the time our daughter turned 4, son was now 6, she started having more behavioral issues and was diagnosed with ADHD. At 5 she was diagnosed with Autism Spectrum Disorder, and at 5.5 with PANDAS(Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)”

“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.”

“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.”

“Some days are awful and I want to curl up in bed and cry. I remind myself that things could be much worse.”

 

“Sometimes I get sad, or even jealous, when I see other children playing sports, taking dance classes or music lessons.”

“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.”

“When I turned 36 my pregnancy was categorized as “high risk.” Just that extra year over 35 gets a whole new set of appointments with it. When my husband and I went to the high risk doctor for our ultrasound the screening test for Down Syndrome was offered. A simple blood test would be able to tell if our child would carry an extra chromosome. We both kind of shrugged our shoulders and said “why bother, we would continue with the pregnancy no matter the outcome.” But the doctor encouraged us to get it. It was covered by our insurance and if we did screen positive it would help us monitor our baby and keep him as safe as possible through the pregnancy and delivery. You never think you will be the statistic though. High risk pregnancies and Down Syndrome happen to other people, not us. In hindsight, I think our doctor knew and suspected something.”

“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 had an amniocentesis to make sure but deep down we trusted the science and knew that hope was probably just that, hope. 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. And then the “what if’s” 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.” Okay, two tests and multiple ultrasounds later, we are not holding our breath that we got the wrong information.”

“As we continued through our pregnancy, we decided it was time to announce our son. It was so hard to tell people face to face so after we told close family and friends; we decided to do it 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 okay.”

“When Eli arrived we were so fortunate. He arrived safely and by a stroke of luck, we had a natural birth. He breastfed and avoided the NICU. 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. He’s been developing very well. We do have a multitude of extra appointments though, even for a healthy little guy. One month I counted 9 appointments: audiologist, labs, optometrist, speech therapy, physical therapy, etc. It was crazy but we managed. Eli has only given us one hospital stay. It was one of the scariest, saddest memories I will ever have. He was admitted to the hospital for 5 days for RSV. His little body just couldn’t fight it on its own at 3 months old. I spent New Year’s Eve in the hospital in Orlando with him, watching fireworks out the window thinking, “If anything happens to this little guy, I don’t know how I will go on.” The sight of his car seat being strapped to a gurney and riding in the ambulance all the way to Orlando with sirens blaring was so depressing. To this day when I see a hospital picture of anyone’s child my heart just about breaks for them. No parent should have to go through that. 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.”

“Eli has kept up pretty well with milestones considering he has low tone from Down Syndrome. He’s always trying to keep up with his older brother. He watches him and just seems to want to do what he’s doing. I wish I could say my four year old is thrilled with it! My four year old is too young to understand that Eli is “different” so we haven’t even mentioned it. We will when the time comes. I remember my four year old, 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 has a 1/2 brother who is a teenager. I will never forget when we told him. He was so genuine and asked if we could fix his Down Syndrome. It was so heartfelt and sweet. We assured him everything would be okay and it has been. Eli may be only 11 months 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.”

“My advice is don’t be scared of the “what ifs.” They can eat you alive. You will get through it but at the same time it is okay to have moments of weakness. Look for those support systems that can help you stay sane but be careful of Google! You become the expert for your child. Don’t doubt yourself. Mommy intuition is incredible! My hope is for Eli to have all the opportunities he wants; to participate fully in society and live as independently as he can. If he wants to live at home, great. If he wants to live in an apartment with a friend-great. If he wants to work-great. But I will tell you, he will have a college fund just like his brother. And I’m secretly hoping he will be my little Special Olympics equestrian because I can’t imagine his brother riding and someone in the family has to carry on my legacy!”

“Bethany and her twin sister were born at 34 weeks and rushed off to the NICU. While her twin started breathing on her own within two hours, Bethany continued to struggle. She struggled with her breathing so much they had to intubate her and she stayed that way for about 6 days. She couldn’t be held and did not tolerate touch very well. I figured once we got through this and got her home everything would get easier from there. I was definitely wrong. It was only the beginning.”

“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. It can be caused by many things; some severe. To this day we don’t know what causes hers. 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. Due to her hypotonia she couldn’t roll or move on her own and learned to sit up very late. This caused her to spend a lot of time on her back and she developed plagiocephaly (flat head). They wanted to give her a helmet to reshape her head but we couldn’t. The helmet was too heavy for her to handle with the hypotonia. She already had trouble holding her own head up and this would make it impossible. We had to be super diligent about keeping her off her back as much as possible. She couldn’t hold her head up well enough to stay on her belly and she hated it. I spent much of the time, when I was with her, holding her to keep her from laying on her head. It was hard but it worked and I’m so glad I did it. 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.”

“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.”

“At 1 year she started talking and then mysteriously stopped. She would bite herself and me and have horrible meltdowns that I could not fix. I felt so lost and out of control but everyone said it was fine and nothing was wrong. They kept telling me I was just a worried first time mom but my heart felt there was something more going on. At age 2, still no speech and the meltdowns were getting worse. She couldn’t tolerate certain places or large crowds. Noises bothered her and sometimes even touch. I finally insisted that she be evaluated. She ended up being diagnosed with Autism Spectrum Disorder. It was hard at first but with therapy and family support she has come a long way. She is verbal and very intelligent. She is loving and funny and I am so proud of the progress she has made. I want her to know that that one word, AUTISM, doesn’t define her. It isn’t all that she is or can be. It might make it harder for her to navigate social situations but she can do anything anyone else can. People hear that word and judge her. It drives me crazy the negative connotations that can be associated with one word.”

“Bethany has worked so hard to get where she is today. She wears her AFOs, which are helping to strengthen her legs even though they aren’t the most fun or comfortable. She’s learning to use her words better instead of shutting down and just screaming. She is learning to join in on social situations that may be uncomfortable or scary to her. 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 so strong and persistent as she is today. She can do anything and I hope she never listens to anyone who says she can’t.”

“I would like to bring awareness to the fact that there is a wide range to Autism. It doesn’t always mean you are severely disabled. You can be Autistic and do the same things everyone else does, just maybe a little differently. These kids have a place in this world, too and we as parents need to help our non-special needs kids to be accepting of everyone. Also don’t tell your kids to be quiet when they see someone with a disability and have questions. I would rather people ask us why Bethany has braces, rather than telling their kids to be quiet and stop staring. It causes kids to stare more and makes Bethany uncomfortable. It’s not like she can’t hear you. She hears you and she would rather answer you than have to feel like an outsider.”