Dear Parents in the NICU


Dear parents in the neonatal intensive care unit (NICU),

I’ve been where you are. More than once. First, as a preemie baby whose life was undoubtedly saved by the NICU, and twice again as a mom. I know firsthand how difficult the NICU journey can be. I also know the ups and downs of life after a baby leaves the NICU, because I’ve spent 30 years living life after my own 10-week stay in the 1970s, when I was born 12 weeks early.

September is “NICU Awareness Month,” a month dedicated to honoring the NICU babies, families and professionals who work there. Without a doubt, the NICU can be a scary place for the parents and families of babies who need the unit’s care — but it’s also a place of miracles and saving lives.

And when you’re caught up in the routines of tests, beeping machines, or counting down to the next precious few minutes when you are allowed to hold one or more little ones, it can be hard to take the longer view — that this tiny child more than likely will have a happy, full and independent life. As a former 28-weeker, I live the longer view every day. This is what it’s like, looking back years later, as a NICU survivor.

Although not all babies who spend time in the NICU are born premature, preemies (meaning any baby born prior to 37 weeks of pregnancy) make up most of the NICU’s patients. Currently, premature babies include one out of every 10 infants born worldwide, and one out of every 9.6 births in the United States, according to 2016 statistics.

While the NICU is a scary place for parents unfamiliar with its machines and procedures, we graduates of the NICU know firsthand that modern medicine saves lives and gives second chances. We know, because whenever we ask our mothers or fathers to “tell me the story of when I was born,” we hear about the NICU, or the doctors and nurses whose round-the-clock care brought us back from the brink of death, or just how small we once were in comparison to our mother or father’s hands and forearms. Whether only slightly preterm like my daughters, or very preterm like myself, stories of the NICU entwine themselves into the tales of our first days and months living in the world.

Right from the start, we’re told we’re survivors, and this is undoubtedly true. Many NICU babies experience more blood draws, tubes and medical procedures in their first few days, weeks, or months than most people experience if they’re relatively healthy.

Although most of the time babies thrive after the NICU, some of us know this is not always true. Prematurity remains a leading cause of infant death in the first year of life, both worldwide and in the United States. I don’t talk about her much, but my fraternal twin sister brings this statistic as close to home as we shared our mother’s womb. Separated by different amniotic sacs, I never held her hand or cuddled up to her inside our mother, but she’s part of my family, and I grieve for the sister I never knew.


The majority of us, former preemies, thrive like ordinary children. We become toddlers who say, “No!” and elementary school kids who sing songs of joy or celebrate the poop emoji. We become teenagers who have our own very clear ideas of what to do with our lives, and adults who, in the vast majority of cases today, live full lives. The NICU seems to become a distant memory.

Surviving a life that got its start in the NICU doesn’t always feel heroic or triumphant. Watching my tiny daughters have their heels pricked for blood draws, seeing them connected to tubes and wires, or reaching out to them through the plastic casing of an isolette, felt like reliving a past I thought I’d forgotten. “Preemies are so strong,” my mother would remind me, thinking of my own tenuous infancy. “I don’t always feel like a survivor,” I thought then, as hidden memories resonated somewhere in my body, far below the level of thought. What seems like a distant memory is nonetheless present in scars on the body, or even more subtle scars in the psyche.

Although most of us thrive like our full-term peers, studies over the past few years continuously reveal that early birth can leave a mark on the personality of the formerly premature. There’s a distinct set of traits that characterizes babies born on the more vulnerable end of the prematurity spectrum, meaning earlier than 32 weeks of gestation. We “very” and “extremely” preterm individuals (as the World Health Organization calls those born between 28-32 weeks gestation, and before 28 weeks, respectively) are statistically more likely to be introverted and have a socially withdrawn personality; more likely to have symptoms of inattention that resemble ADHD; and more likely to internalize our worries than to react with anger, aggression or hyperactivity. We’re also statistically also more likely than full-term babies to have learning difficulties, processing disorders, and mental health challenges. Sometimes these differences cause obvious problems, but sometimes — like the slight hearing loss I’ve noticed since I was a child — these differences are much more subtle.

Despite these outcomes, we NICU graduates know the value of life, even at its darkest moments. We know that life clings, irrevocably and tenaciously, to life, because we’ve been there, even if we don’t remember the moments when our own lives were most in danger.

I also know that parents enduring the journey of the NICU may feel uncomfortable when congratulated on the birth of a tiny, early child. The NICU is one of those unsettling places where life doesn’t always work out the way we want it to. As a mother to two preemies, I’ve felt the sincerity of congratulations on the birth of a baby born too soon, coupled with the reality of my own emotions of hope, fear and guilt. There is little that feels worse for a new mother than standing over an isolette in the middle of her last night in the hospital, crying, apologizing to the tiny baby inside that I don’t know when she’ll be able to come home — and that I’m sorry she had to experience this, too. No wonder we parents focus on the positives: the little miracles they are.

But most of all, what I’d like to tell you about the journey of the NICU is that, “You’ll get through this, and on the other side, your child will almost certainly meet her milestones in her own way and time; she will almost certainly smile at you and love you and grow to have a happy childhood, a fully lived adulthood.”

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Thinkstock image by monkeybusinessimages




New Beginnings: The Day My Daughter Was Discharged From the NICU


Spring symbolizes new life and new beginnings for many people, but for me, it’s different. Autumn is my spring.

I am a teacher, the beginning of autumn means a fresh start to a new school year and also the beginning of my life with my daughter.

My daughter, Joy, was born 17 weeks early as a micro-preemie in May of 2012. She weighed just 1 pound and 4 ounces at birth and was only 11 ¾ inches long. After spending 121 days in the Neonatal Intensive Care Unit (NICU), she came home to join our family on September 9th, 2012.


That was the day my family became complete. All of our fears and sadness began to dissipate on that September day, five years ago this month.

It just so happens that September is also NICU Awareness Month, so there is no better time to share our story!

Our entire family was excited to have Joy come home. My boys made signs and banners and our family filled our house with balloons. It was a celebration of a new start.

Prior to her birth, I stood a very high chance of losing my life to Placenta Percreta (and I almost did on four different occasions), and I was hospitalized for several weeks because of it. Joy was also very likely not to survive her extremely premature birth.

We are both survivors.

The first four months of my daughter’s life are still a bit of a fog. I believe I was going through the motions of what needed to be done to keep my family from falling apart, although I can’t remember much of what was going on outside of the NICU.

I was in function mode.

Joy’s extremely premature birth not only caused her to deal with a plethora of serious medical issues, but it also left me very sick and my three other children without a full-functioning and available mother for several months. But, that all began to change in the fall of 2012.

September 9th marked the five year anniversary of the day my rock-star micro-preemie came home from the NICU. That day will be burned in my memory forever.

It was almost like the day I gave birth, or the day when a new mother brings home her healthy new baby — a feeling of a new beginning and a fresh start.

A do-over.

I would give almost anything to have had a “regular and full-term” delivery and have that be the way my daughter joined our family after a three day hospital stay. I wish I could somehow remove all of the pain and suffering she endured during her four months in the NICU.

I would give almost anything to be able to have those precious months back with my other three children and not have the memories and guilt of leaving them
and “choosing” to be by my daughter’s side while she was stuck in a human incubator designed to keep the rest of the world away. But that is not what happened to us, and we must make the best of what happened.

I cannot believe that five years have already passed since my daughter’s NICU homecoming. In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago.

I’m curious if any other preemie or NICU parents feel the same.

Do you remember your baby’s discharge date as I do?

Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live?

Today, Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl, and she also loves the fall!

Autumn will always symbolize strength and new beginnings for our family, and there’s no better season to take commemorative photos in places like apple orchards, pumpkin patches or just over a pile of leaves.

Happy five year NICU Homecoming to Joy and our family, and Happy Fall to you!

A fresh start can be good for us all.

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Babies in Boxes: Why We Need NICU Awareness Month


What did your baby hear during the first few months of life? Did you play loud beeping noises all day and night?

What did your baby see? Did you shine bright lights over the crib? Did you allow groups of strangers in your house to watch his every move?

What did your baby feel? Did you keep him alone in a box for the majority of the day? Did you continuously prick needles in his skin? Did you tape wires to his precious skin?

What did your baby eat? Did you withhold food for weeks at a time?

When I tell people my twins arrived at 34 weeks, this is what I hear:

“Oh, that’s not bad.” “Great job, Momma! That’s almost full-term for twins.”

This is why we need NICU Awareness Month — so people will understand the challenges and trauma our most fragile babies must work so hard to overcome.

My twins spent six weeks in the NICU. That’s six weeks they heard continuous beeping sounds, instead of soothing lullabies. That’s six weeks they were blasted with bright lights, instead of being comforted by a soothing lamp. That’s six weeks of enduring heel pricks, PIC lines, X-rays, and incubators, instead of rocking in a comfy glider with mom and dad.

Dominic was born relatively healthy for a 4-pound baby but he needed a little help breathing, so they put him on forced air and inserted a feeding tube.. That means, I wasn’t allowed to breastfeed. As the days went on, he developed a serious intestinal infection. They stopped feeding him altogether, threaded a tube from his arm to his heart, and pumped in his nutrition through that tube.

For the next two weeks, the doctors performed multiple X-rays and loaded him full of antibiotics. I wasn’t allowed to hold him, so he stayed in his box, alone.

After the infection cleared, I held little Dominic for a couple days and they started feeding him through a tube. But the infection returned, and we started the process all over again.

Julian was much weaker when he was born. He wasn’t able to breath on his own or regulate his body temperature. The doctors put him in a separate room of the NICU reserved for the most fragile babies. He was placed on a stronger breathing machine and given nutrition, but no food.

During Julian’s first week of life, he wasn’t held, wasn’t fed, and was barely touched. Thankfully, he pushed through and was moved to an incubator right beside his brother — where he developed the same intestinal infection. (Here we go again). Julian’s infection wasn’t nearly as bad as Dominic’s. Sometimes, I think his gut was just sympathizing with Dominic’s.

With the help of the doctors and nurses, my babies made it home after six weeks — right before their due date. I will always be grateful for their hard work and dedication. They have some of the most important jobs on Earth.

The twins will be 4 this month. They are both healthy and happy, but have serious speech and cognitive delays. As a NICU mom, I wonder how their experiences affected their emotional and mental health. Did being deprived of touch contribute to Julian’s sensory issues? Did the bright lights, noises and needles cause them to have anxiety?

I will always refer to Dominic and Julian as “NICU babies.” That title not only lets people know how much they’ve been through — it shows people how strong they are and how much they have overcome.

Follow this Journey at Not an Autism Mom

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12 Ways to Bond With Your Baby in the NICU


When I first got pregnant and thought about giving birth (aside from worrying over the typical birthing fears), I constantly thought about the moment when they would lift my daughter in front of me, place her on my chest, and that moment when we first saw each other, bonding as mother and daughter. The thought of that moment is powerful even today, and something I mourned over when Addie was born. She wasn’t placed on my chest immediately following her birth, she was taken by nurses, hooked up to machines, checked, poked, prodded and raced straight to the Neonatal Intensive Care Unit (NICU). I didn’t see her for 24 hours and I didn’t hold her for a week. Heart wrenching doesn’t do justice to how I felt.

Why is bonding so important?

Bonding is essential for normal infant development. A “typical,” full-term baby is designed to enter a bonding relationship and sends out signals for adults to respond to: eye contact, crying, smiling, noises, etc. When a caregiver consistently responds to those signals, a trusting, life-long attachment is formed. Babies who are held more during the first six months of life are more secure and confident children.

Intense, huh?

The NICU creates barriers to bonding.

The NICU does create some barriers to bonding with your baby. They may be too unstable to be held or you may have postpartum health issues of your own. Babies are literally behind a wall — a glass barrier. They may not even be in your arms. Gestational age or medical issues may also prevent them from having the skills developed to initiate or respond to your bids for bond. But building a bond with your preemie, no matter how pre-term, is possible. It just takes a little bit of creativity, a lot of determination and a wholesale mindset shift from what you were expecting when you were expecting.

1. Care for them.

This can be an overwhelming task, intimidating at first. It can take time to build your confidence, but it’s important for bonding. Whenever I was in the NICU, I did as much as they’d let me and was always asking to learn more. To start, I learned how to take her temperature, move her pulse-ox from one limb to another, wipe the gunk around her mouth and give a sponge bath. We swaddled her, learning from the world’s best swaddlers (our NICU nurses). I made a point to ask her team to wait for me to arrive every day to do some of these things and I coordinated my visits around her cares. I also did simple things, changing the bedding in her isolette or the sheets in the crib when she was moved there. By the time Adeline was ready for discharge, I could do everything, from giving enemas or medications, to working her feeding pumps. I could even change her C-PAP mask. Not only did this make me feel more like a “normal” mother to Addie during her NICU stay, it also prepared me for the daunting task of doing many of these things at home.

2. Mother’s milk.

The benefits of breastfeeding are many and well documented. And breast milk for a premature baby is even more important than for a full-term baby. Preemies are at greater risk for infections and are more susceptible to illness. Breast milk provides antibodies to help protect them. It’s also easier to digest and has special nutrients they need. Your preemie is going to need to be of a certain gestational age (typically 36 weeks) to able to suck, swallow and breath to breastfeed, but it’s so important for building a bond. Even before you can breastfeed though, pumping for them is important. Every ounce counts! When you finally can breastfeed, you release a hormone called oxytocin which can enhance a mother’s feeling of trust, love and affection. Not only will you have an amazing motherhood rush from this hormone, it also relaxes your baby as they lay against your chest and hear your familiar heartbeat. They feel loved, protected and secure while breastfeeding. I couldn’t breastfeed Adeline for the first 10 weeks, and even when she was discharged she was only able to breast feed once per day. It wasn’t until she was 7 months old that I was able to let her breastfeed whenever she wanted. Even without being able to breastfeed, the hell of pumping was worth it because I knew what I was doing was making her stronger.

Whenever I was in the NICU, I pumped beside her. This is a personal choice, because you do have less privacy than using the pumping rooms. But if I couldn’t breastfeed her, I wanted to feel as close to her as I could. I tried to make it a special time, just for us. I dimmed the lights, pulled the curtains, lowered the isolette, slid my rocking chair as close as possible, and pumped. I’d hold her hand, touch her finger, and sing or read to her while I pumped. I didn’t sit on my cell phone and check Instagram, I was just present in that moment. Amazingly, it also increased my production. Eventually, when she was older and it was easier to get her in and out of the isolette, I did skin to skin while pumping. Logistically, it wasn’t the easiest thing, but it increased my milk even more than just sitting next to her in the rocking chair.

3. Kangaroo Care.

Do this as much as possible, for as long as possible, and don’t forget about Dad! Kangaroo care was started in 1979 when the hospitals ran out of incubators. They needed a way to keep the babies warm and so they did kangaroo care. Coupled with time and a strict breast milk diet, mortality rates plunged from 70 percent to 30 percent. Skin to skin improves heart rates and assists with respiratory distress, increases a mother’s milk “let down,” improves immunity, increases weight gain, regulates body temperature and decreases chances of death! In terms of bonding, when I held her, it was the first time I truly felt like a mom. There’s also no better way to relieve NICU stress.

4. Touch them.

Give your baby as much positive touch as possible, but keep their pain levels and their immature sensory system in mind. When Addie was first born, I just wanted to stroke her body and kiss her everywhere, but I learned that was too much for her to handle. Touch can be the beginning of your relationship and can help your baby build trust in you. NICU babies are touched and messed with a lot, and it’s not often pleasurable. Your touch can help your baby calm down and learn not all touching is negative. Start small, like holding a hand or a finger and make sure to look at them, talk, or sing to them. Comfort holding is another technique. This is when you cup your hands on your baby’s head, bottom, back or feet, in order create the feeling of the walls of the uterus and give a deeper, more pressured touch. At first, try to avoid stroking, patting or even using your fingertips lightly as this can cause pain. Kangaroo care is a great way to touch, as is infant massage. There is some new evidence based research the supports the short-term benefits of infant based massage; it supports parent-infant interaction, increases weight gain, lowers stress (levels of cortisol), increases muscle tone, improves sleep, and can even lead to earlier discharge. It’s important you learn how to properly massage your infant, the nurses or a hospital PT should be able to help with the proper techniques.

5. Talk to them.

Talking to your children is so important, it helps to build their brain (which triples in size the first few years of life). There is research to support the more you talk to your child, the stronger their language skills, reading skills and even cognitive development! The easiest thing to do is just talk to your baby constantly, imitate their facial expressions, their coos and babbles, give a play by play when changing their diaper or doing any sort of care, ask questions, sing, read, tell stories, and make sure they know how loved they are with your words. This kind of activity will help you to build a relationship with your baby. I still give Adeline play by play during activities, so much so, that it’s become second nature to do this now. I even catch myself saying to John, “OK, first I am going to go to the bathroom, pack my bag and then we can leave.” And he says, “Do I need all those details?”

Besides kangaroo care, reading was the number one way John bonded with Addie. He read to her daily. Each night when he got to the NICU after work, he sat beside her and read to her. He read the entire “Winnie the Pooh” collection and all of the “Just So Stories.” I read her “The Little Engine that Could,” again and again and it had such an incredible impact. Reading to your baby builds a connection, they tune in to the rhythm and cadence of your words.

6. Pay attention to everything.

Life in the NICU can be traumatic but it’s important to pay attention. Learn what all the machines are and what the sounds, numbers and lights mean. Ask the same question five times if you need to, and learn why they alarm, and what the goal is. If possible, participate in rounds. I spoke to my daughter’s doctors every single day, and participated in rounds weekly. This helps you learn more about your baby, so you can better understand how they are feeling. When holding your baby, pay attention to their heart rate and oxygen needs. There were times holding her made her more stable, and other times when it was too much. It’s important to learn your baby’s cues, so you know if something is comfortable or uncomfortable. For a baby that can’t make noise or move much, the machines they’re hooked to are usually your best cues. A few nurses suggested we not play music for Adeline until she was 40 weeks, but starting at 36 weeks we noticed it seemed to soothe her. Even now at 2 years old, during inpatient stays, I need to pay attention to everything going on around us. I know what her typical heart rate is, and it was raised for days. Turns out she had a trauma to her uterus during a biopsy, and the heart rate was the only indicator she was in pain. It can be easier, and it’s understandable, to let your doctors and nurses handle that side of things, but there is no better advocate or voice for your child than you.

7. Sing to them.

Music therapy is rather new, and there is not a ton of research supporting its benefits, especially for preemies. But recently, a study done in NY showed music and lullabies played to babies in the NICU starting at 32 weeks gestation had improved breathing and heart rates, and improved feeding and sleeping patterns. Personally, playing music for Adeline relaxed us. Playing her music that was important to us, helped build the bond playing it for her. We made a playlist for her on Spotify and played it daily, we sang to her, rocked her, played it during kangaroo care. It made such an impact, John had one of the songs we played for her tattooed on his arm. Even if it didn’t help her directly, it helped us get through many long nights and drowned out the beeps and the whir of the NICU machines.

8. Be present.

I may be on the extreme end of the spectrum, but I lived in that NICU. I did not have any other children and was able to work from home part-time while Addie was in the NICU. I recommend you spend as much time as possible in that unit. We had the opportunity to spend the night on the floor if we signed up in advance. There were only a few rooms available, but we stayed overnight during holidays, rough days, and at least one night every other weekend. Getting up in the middle of the night to change her or pump bedside her built that relationship early. When she had her first surgery at 3 months, I sat beside that isolette all night long. I talked to her, reassured her, held her hand, and wanted her to know her mama wasn’t going anywhere. Try to be present and let go of the outside world. Put your cellphone down while your baby is awake. If you spend enough time there, you’ll realize they sleep — a lot. Instagram, Facebook, text messaging…all of that can wait until they’re asleep. Be there physically, mentally and emotionally during the times they are, too.

9. Make eye contact.

I feel like a broken record saying these things are all so important, but heck, they are! Eye gaze is one of the first milestones a full-term baby achieves, and boy is it important. When parents’ and babies’ eyes meet, an emotional connection is established. Mutual gaze is a shared communicative experience, and you can communicate your state of mind through gestures, facial expressions and smiles. When a baby sees your eyes, they start making connections between food and the feeder, voices and the person, eventually an object and a word, etc. Don’t expect eye gaze to be long, and don’t expect it to happen when the baby is tired, hungry or upset. When your baby looks at you, talk to them, sing, make facial expressions, touch them gently and try not to look away first.

10. Bring home to them and bring them home with you.

If possible, leave something with your baby that smells like you. I slept with swaddles, a small stuffed animal or nursing pads. I would keep them with me all day against my chest and then put it in her isolette near her head before I left. The next day I would take it back, and then I could smell her all day. The scent of your baby can relax you and even promote breast milk production. Try to create a “home” in the NICU. For me, it was important that all of the “stuff” belonged to Adeline. It may have been silly, but I loved having her sleeping on “her” sheets, using “her” blankets. I did all her laundry and she only wore her own clothes. NICUs live and die on donations, and many of them have clothes that have been donated through the years. When your baby starts wearing clothes, they can provide donated clothes for them. And the bedding is usually donated. But we wanted her to have her own stuff, and brought all of her clothes and bedding from home. Don’t be afraid to have all of this get dirty though — NICUs can be messy places. The stuff you bring will get messy, but it’s worth it when you see your baby sleeping on their own blankets and wearing their own onesies. We also decorated her area with pictures of us, and made it festive for the holidays. For Christmas we put up a small tree with a few ornaments, hung our stockings, and made our own little Christmas corner. It made this foreign place feel more like home.

11. Take pictures.

Looking through the lens provides a different perspective. When Adeline was born, I was unable to see her for 24 hours, so they gave me a picture to have with me. I held onto that thing for dear life, stared at it constantly, slept with it taped to my bed and began to bond with just that photo. When your baby can’t be home with you, you can look at their photos. When I held Adeline’s hand, or looked at a photo of my hand holding Adeline’s hand, the feeling was different. It gives a different perspective to things and you see things in a different light. We may have been a little crazy, but we documented every step of the journey, every day, every milestone, every event — we have a photo memory of it all.

12. Learn.

Be the expert on your child’s condition. It will not happen overnight, but make the effort to get there. It’s important you understand the medical complexities of what’s going on. Ask questions, again and again; read articles; join Facebook groups; connect with other families who are going through similar situations. This will help you be a better advocate and ensure your child gets everything they need and thus results in a stronger bond. Form strong relationships with staff. Our favorite nurses would send me photos of Adeline when I was not there, plan special things for us (like a sleepover as a family on Christmas Eve), and had our backs. Ask for help and take advantage of the access to medical providers. Our nurses got to know us and took time out of their day to watch us, help us and give us feedback on how we were doing with everything we were doing for Addie.

Whew! I am not sure if I have PTSD, need some counseling or if this is cathartic — but I cried about 15 times writing this. It’s hard to look back and remember those unstable times, those difficult times. But I feel like sharing her story is so important and my meager wish is that this will help a family who is staring at the isolette, traumatized, not knowing what to do with the little nugget baking inside.

A version of this post appeared on She Got Guts.

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How I'm Defying Doctors' Expectations as a Person Who Was Born Prematurely


I am a miracle, or at least that is what they tell me. But I see myself as just an ordinary kid with some differences.

My mom is helping me write this because she knows the facts, but the feelings and other stuff is from me.

My name is Aaron and I am 21 years old. I was born on November 27, 1995, but the thing is, I wasn’t supposed to be born until March 1996. I was born three and a half months early.

When my mom went to the hospital no one believed her that she was in labor, so they didn’t try to stop it, but she was and just a short time after she arrived they had to rush her into the operating room and deliver me.

I was tiny; I only weighed 899 grams and was just about 12 inches long. My mom says my eyes were sealed shut like a kitten’s, and my skin was translucent. I didn’t even have eyelashes yet.

The doctors told my mom and dad I probably wouldn’t survive; my chances were so small that they couldn’t even give them a percentage. They didn’t know I was such a fighter.

I spent three months in the hospital and had a lot of problems. I had surgery on my heart, my eyes, my hernias and my esophagus. I had blood in my brain, and I couldn’t breathe or eat on my own. I was hooked up to all kinds of machines that helped me breathe, fed me, and made sure my heart was beating.

I was given a lot of medicine too.

But then one day I was well enough to go home. I was still on machines that kept track of my breathing, and I had oxygen, but I went home.

They told my mom and dad I would not walk, or talk, or do much of anything. They said I would need a feeding tube for the rest of my life. I guess they just didn’t know me too well, because they were wrong about me.

I spent the first seven years of my life in and out of the hospital, I had pnemonia all of the time, and I needed more surgeries. I had surgery on my legs and my esophagus again, but it was the pnemonias that were the problem.

There were so many times when they thought I would die, and that last time when I was 7 years old they were telling my mom to make sure everyone came in to see me because I wasn’t going to recover this time. But I did — another miracle, they say. The biggest miracle is that after that pnemonia I never got it again, ever. No one knows why I stopped getting it.

It’s kinda like the seizures I used to get. I had hundreds a day, my whole body would get slammed into the ground face first, I had concussions a lot and had to be on a lot of medicine to try to control them. They told my mom and dad it was just the beginning, and that as I got older I would have more types of seizures and have them more often.

But then one day I got a really high fever, and after that I never had another seizure again. They weaned me off of my medicines and I still never had another seizure. No one knows how it happened, but they were using that word again, miracle; it was another miracle.

Anyway, I was so sick for the first seven years that I didn’t have a lot of time or energy to learn the things other kids do. I didn’t learn to talk til I was 5 years old, and I didn’t walk without a walker til I was about 6 or 7 years old. And I was around 3 years old when I learned how to eat real food and not use a feeding tube.

After that things went pretty good for a while. I still got sick a lot and missed a lot of school, and had a lot of breathing treatments and medicine to take, but I was doing good.

The older I get the better my lungs are getting. I hardly ever get sick like that anymore, but when I do it really gets bad and I miss a lot of school because of it.

But now that I’m getting older and bigger my legs are getting worse and my back is getting worse. They had to do surgery on my legs again last year and I was in bed for a few months. It sucked because it was summer time and I missed my whole summer vacation.

I use a wheelchair a lot now and I have a special chair that takes me up the steps in my house.

When I walk I can’t go very far and I’m really slow. I fall a lot and my legs get the shakes. I usually have to hold someone’s hand, the wall, or furniture.

I have a special bed; it’s like a hospital bed and I have to have the head part up because my back hurts too badly if I don’t. I have limited depth perception, no peripheral vision, reactive airways, Asperger’s, scoliosis and cerebral palsy.

I laugh a lot and make up jokes and try to make other people laugh too.

In August 2017 I graduated from my job training school. I started online classes at American Broadcasting School in July because I want to get into radio broadcasting. It’s week five and so far I like it, even though it is really hard sometimes.

I decided to make a page on Facebook to help raise awareness about guys like me.

People don’t know enough about cerebral palsy, Asperger’s, and other conditions kids and young adults have from being born too early. And I want to help raise money for cerebral palsy charities.

Sometimes it is really hard because people don’t understand why I’m slow, and I get tired of the questions like why I can’t do something. So I think the page will help people understand. I hope a lot of people ask the questions so I can answer them. I hope people share this page and like it so everyone can learn about this.

Follow this journey on Aaron’s Facebook page.

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The Reason I'm Sending My Son With Disabilities to Kindergarten Early


Three days from today, my oldest will turn 5. Six days later he will enter his elementary school, not as a preschooler, but as a kindergartner. I wish this transition was nothing but happiness and excitement for what will come. He is excited, but as we get closer to the start of school, my apprehension only grows.

I don’t worry about his academics. He is reading and can do basic addition in his head. His creativity and problem solving skills are exceptional and despite an articulation disorder, his intelligence shines through. So why I am so nervous?

I am anxious because he was forced into this world eight and a half weeks before his due date. Had he been born on time, he would have missed the kindergarten cutoff in our district by seven days. In addition, our state only requires children to be enrolled in a formal education by August 1st of the year in which they turn 6. Because my son’s birthday is 10 days past that, my husband and I are not in violation of our state’s compulsory education laws until 10 days before he turns 7. So why is he is starting kindergarten so early? Especially when evidence shows delaying kindergarten results in students having better attention and less behavior issues than the younger kids in the class? Two words: Early Intervention.

As a result of his prematurity, my son has both, an articulation disorder and sensory processing disorder. He receives speech services through part B of the Individuals with Disabilities Act. As such, his preschool tuition was covered by our state. His school would have had to petition the state for a waiver in order to give him an extra year of preschool. My husband and I met with his teacher and the school’s administration in January to discuss our desire to give him another year to mature. While the school was sympathetic to our concerns, they didn’t believe he needed an extra year of preschool. Yes, as his parents we could have really pushed back and forced the issue, but we chose not to at that time.


A second option was to decline services and put him in a private preschool for this upcoming school year and then enroll him in kindergarten at 6. He would then have to re-qualify for services at that time. In our minds, his need for services and continuity of schools is more important. And honestly, if kindergarten was still play based and not the new first grade, we wouldn’t have as much of a concern.

My son has such a sweet and wonderful personality. He has never, ever met a stranger, despite me trying to teach him about “tricky people.” He will give a complete stranger a hug when he senses they need one. His laughter is contagious and random people at the store will stop us to comment on his laugh.

On top of his sensory issues, he is a very empathic child. Just like his mom, he feels the mood of the room when he enters. He struggles with articulating his feelings and frustrations which can cause him to act out at times. I mostly worry his young age combined with his sensory issues will cause him to be labeled a behavior problem, when in reality if it had been easier to give him an extra year of preschool while maintaining services, those issues may not be present.

As of right now wherever we go, he makes friends. At this age, other kids see the light that shines within him. I am terrified as he gets older his light will be snuffed out by bullies and it will be too much for his sensitive heart to bear.

As a mother, I am constantly questioning whether or not I am doing the right thing. Five years from now, will I be regretting this decision? 10 years? Will his young age affect him greatly in school? Or will he be able to face the challenges that lie ahead, just as he has done every day since he was born? Only time will tell. But ready or not, kindergarten here he comes.


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