What it Means to be a Member of the Preemie Parents Club


I am a member of The Preemie Parents Club.

I didn’t sign up for it – and like most preemie parents, I didn’t have any plans of ever joining. There were no membership forms, or recruitment events, or trial periods. One day, I was a typical mom-to-be, pregnant with my precious baby boy. The next day, I was giving birth to my son sixteen weeks early, who weighed in at one pound and five ounces. From there, we were in the NICU, a place I never knew existed. My baby was lying in an incubator connected a maze of tubes and wires, and it felt like my fault. He was a preemie. His dad and I were now, preemie parents. But more importantly, we were parents to the strongest most resilient human being we would ever know.

We soon learned that although membership was not a choice there was however, an admission fee.  It would cost as many prayers, and hopes. and dreams as we could spare. We spent five months in the intensive care unit of three different hospitals. We almost lost our baby, many times. We almost lost ourselves, a few times more than that. We became advocates and medical experts. Each day we grew more proud. Proud as our baby grew and beat so many odds. Grateful that despite his battle with necrotizing enterocolitis (NEC), grade 3 and 4 brain bleeds, retinopathy of prematurity (ROP) and lung disease, he was still fighting. Our membership had its perks. We knew our lives would never be the same.

All across the world, millions of parents are a part of this club. Our journeys are different, our outcomes range, but the part of us that is forever changed, is the same. In my five years as a preemie mom, prematurity awareness advocate, preemie parent mentor and writer of poetry for preemie babies across the globe, there are some things I have come to know for sure.

So, what does it mean to be a member of the Preemie Parents Club?

  1. It means that our babies were born early – they went from the safety of Mommy’s womb to the uncertainty of a NICU incubator. And it scared the heck out of us.
  2. It means that we had to leave our babies there. In the NICU. It means that we endured that unnatural separation every night, for days, weeks, months, and sometimes years, from our babies. And that stings.
  3. It means we felt a pain that parents of full term healthy babies, could never imagine. And we don’t want them to.
  4. It means that our babies almost met their life’s end at their life’s beginning.
  5. It means that we believe with all of our hearts, in miracles.
  6. It means that our babies were literally, born fighters.
  7. It means that we have seen more grace and mercy than we could ever truly thank God for.
  8. It means that we have felt tremendous loss, guilt and sadness. And its OK to say that without a “but”. Its OK to acknowledge the parts of the journey that scared us.
  9. It means that we learned early to be our babies’ advocate. We learned early to speak up, take notes, and talk to the team. And we will never unlearn that.
  10. It means that we are too, fighters. We have gone to battle with insurance companies who didn’t want to pay and jobs that didn’t want to give us the extra time needed to be with our babies.  It’s a shame we have to fight so hard.
  11. It means, as we watched our babies grow, we GREW.
  12. It means that we will have to make some tough decisions. Each step closer to home will require us to make a choice.
  13. It means that our babies are born to us twice, once when they enter the world and once when they finally leave the NICU.
  14. It means that our journey with prematurity doesn’t end with discharge.
  15. It means that our babies may face challenges from their NICU stay; it means our baby may not even get the chance to go home. We know this from day one.
  16. It means that we are scared to have another baby. Scared to do it all over again. The thought terrifies us. The NICU took a toll on us.
  17. It means that our babies needs to be protected from germs for the first two years of their lives. We need you to understand that. And wash your hands.
  18. It means that our babies have two ages, actual and adjusted. We measure growth and progress differently. We don’t need you to compare.
  19. It means that we watch our babies sleep. We check to make sure they are breathing. We have to.
  20. It means that our homes will see far more therapists, social workers, nurses and doctors than we could possibly want.
  21. It means that number 20 doesn’t matter, because we are just so happy to have our baby home.
  22. It means that we are naturally more grateful and appreciative for the little things. Our babies were the little things.
  23. It means that we too, are survivors.
  24. It means that we need your presence, love, patience and respect as we adjust to our new membership.
  25. It means that our lives will never be the same.

I am a proud member of the Preemie Parents Club. No, I did not plan on joining. And sometimes I wonder if given the power, would I have chosen not to belong? Prematurity gave my son, cerebral palsy. That is the hardest part. But it also gave me, him. He survived. And since I know the outcome of our journey as it is, I am smart enough to appreciate the blessings that prematurity has given us.  I appreciate the NICU because it saved his life. The beauty in number one to 25. The lesson in it all.

I am a member of the Preemie Parents Club. I know that it has made me a better person, and better Momma. My son, is a hero. If this is the journey that God had in the plans for us, then I will proudly, we will proudly, keep on, keeping on.

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I Am Always Aware of Prematurity

November is National Prematurity Awareness Month, but I am always aware of prematurity.

Every day, when I lift up my four year old son out of bed, and feel his warm love filled arms around my neck, I am reminded. At night, when he makes me lay in his arms, forehead to forehead, as he slips off to sleep, his beautiful lashes flickering across my face, I am reminded.  In the evenings after work and school, when we practice sitting to stand and eating hand over hand, working on those fine mother skills, this Mommy, is reminded. My son’s premature birth is something I can never forget. The pictures of him just days old weighing only one pound covered in tiny translucent skin; the videos through his incubator, the hundreds of thousands of dollars in hospital bills from our hospital stay, are all reminders.  The intense love I have for my miracle, and his daily challenges, remind me over and over again.


My greatest gift came with my greatest pain. Prematurity has both broken my entire heart and burst it open with immense happiness. It has brought me a river of tears and a mountain of gratitude. At 24 weeks I gave birth to an extremely ill, small and sick son. I did everything right and my body had betrayed me. He spent five months in the NICU and battled retinopathy of prematurity, grade four brain bleeds, necrotizing enterocolitis and various other preemie problems. Still four years later he wears the scars of the leads across his little tummy. He is my survivor.

I never imagined becoming a mother in the midst of such uncertainty, sadness and guilt. Every single preemie parent understands this. Whether our babies turn out perfectly healthy, face developmental delays, or pass away in the hospital, every single preemie parent is always aware.

We are always aware of the reality of premature birth and its impact on families across the world.

We have witnessed miracles in real life form. We have seen doctors and nurses save the smallest of the smallest. We have spent days, weeks, months and some of us years in the Neonatal Intensive Care Unit. We have begged relentlessly for a chance at life, and celebrated our baby’s chance at life, all in the same prayer. We have been angry; we have had some intense conversations with God. We’ve played the blame game. And we have persevered.

National prematurity awareness month is not for us. Granted, it is a time when we can all share our journey; we have the permission to tell the stories of our preemie’s births that everyone may be tired of hearing. However, the power in this month comes from prevention, challenging the misconceptions, and empowering parents who are just beginning their journey.

November 17th, World Prematurity Day, is an opportunity to shine a light on the leading cause of infant death, and the need to continue to study it, talk about it and heal from it. We can only fix what we can face. Just last month, the March of Dimes released a study that found that 2/3 of premature births in high incomes countries, including the United States, have no known cause. The key word is known. This means, that there is a lot more work to do.

My Jharid is four, and because of prematurity he cannot yet walk and talk. He is loved beyond earthly comprehension, prayed for more than the dictionary has words and has a spirit of resilience that does not exist in a single adult I know. I birthed Praying4MyPreemie, an online source of inspiration for preemie families, and have written poems to celebrate miracles across the globe, because it has changed me so much. This work requires the NICU to stay etched in my mind, just as it remains etched in my heart.

I am always aware of prematurity. But this month, I am asking the entire universe to pay attention too. Spread awareness, spread tolerance and send some love to a preemie family or NICU close to home. I promise you, if you do this, they will never forget.

Because honestly, they have never forgotten.




Five Reasons I Will Forever be a Preemie Mom

I will forever be a preemie mom.

My preemie’s birth is always with me, even four years later. I still look at my son while he is sleeping, to make sure that he is breathing. My Facebook news feed is full of posts and blogs about prematurity and life after. When I am in conversations with expecting moms about their pregnancy, I can’t help but to encourage them to relax and enjoy the weeks ahead. I will never forget, that babies can be born too soon. I will never forget, that a uterus can betray you. My baby was born, too soon. My uterus, betrayed me.


I can sum up my life in two parts, before prematurity and after. My son’s birth sixteen weeks early was the most defining moment in my life. It changed me. Delivering a baby who was only one pound, five ounces and sick – shook me to the core. My love for him was not premature or unhealthy. It was full term and strong. Those five months in the NICU were a hard way to start my journey into motherhood. Watching him fight, and praying he didn’t suffer, that was my life for the longest time. I thought once we were discharged that life would somehow return to normal. I thought prematurity and being a preemie mom ended with the NICU, and age adjustments ended in the first year. But then came surgeries and follow ups and procedures.  I could never have been more wrong.

I will always be a preemie mom, and here are five of the most meaningful reasons why:

  1. My Son’s premature birth taught me some of the greatest life lessons. Appreciate the little things. Be patient. Pray and believe. Before Jharid was born at 24 weeks I saw these statements as popular mantras that people threw around. They are real, and full of power. In the NICU we found our sanity in celebrating the little things. For five months, that was all we had. The things that healthy babies do naturally, my baby had to work very hard to learn. Breathing, feeding, maintaining his temperature – all of those milestones took lots of time. We learned to be patient and to pray. Prayer was like breathing. His dad and I not only prayed for Jharid, we prayed for the other babies, and the nurses and doctors who cared for them. Sometimes, I would wake up from a nap in prayer. I prayed in my dreams. I prayed for my dreams. All of these things proved beneficial in helping us get through that part of our lives. I still apply them as I mother.
  2. Prematurity is still a part of our lives. Jharid suffered brain bleeds in the NICU and developed necrotizing entercolitis (NEC) and retinopathy of prematurity (ROP). The brain bleeds, lack of nutrients while recovering from NEC, and the visual impairments from ROP have resulted in real developmental delays. Jharid has cerebral palsy. So each day as we enter his school for children with special needs, and as we work on helping him learn to talk and walk, as we stretch his muscles and pray for his growth, I am reminded of how we got to this place. Prematurity is always on my mind. It is our reason why.
  3. Every year on his birth date I remember the day he was born. Jharid was supposed to be born in August. He was born in April. April. When it is time for his birthday to come around again, my mind is flooded with memories of his birth day. The labor that came out of nowhere. The fear and panic. The moment I let it settle in my mind that he wasn’t going to live. The moment he was born and we decided to fight like hell. I wrote the poem, On the Day You Were Born to put my sea of emotions into rhythm. His birthday is far more important to me, than my own.
  4. Any time I see a video or television show about prematurity, the flood of tears commences. Just last month I was watching an episode of Grey’s Anatomy and the episode explored prematurity. I cried for an entire hour. Even though the mother and father were actors, I didn’t want them to go through the NICU. I prayed the story would turn out positive. It didn’t. It is wonderful to see prematurity explored on television, and I wish talk shows and day time television would cover it more. It is the only way to remove the stigma and the shame. Prevention comes from awareness.
  5. I have a job to do. Before Jharid was born, I had never had a conversation about prematurity. As far as I knew, no one in the family was born early. I did not even consider it as an option and I did not know what a NICU was. As a result, when Jharid was born I had no one to call. There was no one to lean on. Part of my work now is to provide support to preemie moms through my Facebook page and blog, Praying4MyPreemie. I also write personalized preemie poems for parents, to celebrate the journey. They love my work, but for me it is therapy as well. When I write for them I am able to relive the miracles and the beauty of my son’s early birth. It helps me to keep holding on. Prematurity gave me purpose.

It’s been four years and I still post about Jharid and call him my preemie. I still cry sometimes while looking into his eyes, grateful for how far he has come. As he stands in his gate trainer I still encourage him with an occasional “Preemie Power!”. Why? Because we may be out of the NICU but we are not out of the woods. We are still on the road to recovery. Prematurity has had a lasting effect on our family. Daily I am called on to console new moms and dads as they enter parenthood too soon. We are a family impacted by prematurity and we will continue to spread awareness. Without apology.


Now I am still many other things – a partner, a mentor, a daughter and sister, a friend, a writer and business owner, but I am all of those things post prematurity.  I will always and forever be a preemie mom. I will always and forever love and appreciate my miracle.

My Preemie Valentine (A Poem)


All of my greatest lessons, my blessings most divine
Came in the smallest package with my preemie valentine
Delivered to me early, from the Heavens above
To show me the true meaning of unconditional love

The day you came into my world, too little and too soon
Both happiness and heartache, completely filled the room
More beautiful than roses, sweeter than chocolate
And with a fighting spirit, that I won’t soon forget

Nothing could quite prepare me, for the journey ahead
Needed you home with family, to the NICU instead
Amid the tubes and wires, the nurses and their charts
Was the most precious baby, facing the hardest start

So many odds against you, unsure of what to do
We looked for any sign of hope that we could hold on to
But you my little Cupid aimed, and gave living your all
It’s as if you had no idea, your arrow was so small

I left all expectations, that I held in the past
I loved you in each moment, as if it were your last
Prayed angels would surround you, each time I had to leave
I learned to be more patient, watching you learn to breathe

I cherished every single first, although they came much later
Left my most heartfelt prayers, beside your incubator
The surgeries and setbacks, the constant ups and downs
Made me the better person, I’m so proud to be now

Each day you worked to be here, the strongest kid I know
I learned to love completely, watching my baby grow
You showed me to appreciate, whatever life may bring
Sometimes the biggest reward, comes from the little things

Life after isn’t easy, but I will not complain
I revel in the sunshine, thanks to all of the rain
So when I say “I Love You” a hundred million ways
Know that my heart still carries, you in those NICU days

I now believe in miracles, look what you’ve overcome
All the milestones accomplished, and all the victories won
Love letter to my hero, may you always be mine
You changed my life forever, my preemie valentine

Written by Kaleena Berryman, author of the world famous poem, On the Day You Were Born On the Day You Were Born

Poetry from Praying4MyPreemie
At Praying4MyPreemie, I specialize in poetry written to celebrate the miracles that come with our children, through our personalized  poetry service, Poetically Yours. Give me  your story, sentiments, dedications, and I will create a beautiful poem to honor your child, at a reasonable price. There are no cards that tell our story, this poem will live on forever! First birthday – Coming home from the hospital – birth – even loss, I can capture the words of your heart. My poetry also makes a great gift! Email kaleenaberryman@gmail.com or call Kaleena at 9735176581 for more information.


On the Day You Were Born, for Skyler and Audree

When a Miracle Turns Four, Jharid Jr.

Download the Book of poetry: Stronger Than We Thought: Poetry for the Preemie Mom’s Journey. Download from Amazon onto any computer or electronic device!You do not need a kindle or nook to read electronically.

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My Eight New Year Preemielutions

2018, BRING IT ON.
This is my fifth New Year’s Eve as a preemie mom, and by far, the most exciting. I am ready. Life after the NICU has been a roller coaster, and now, five years later, I feel as though I finally have my seat belt on. This Mommy is settling in and learning to enjoy the ride. My little rock star baby boy has beaten the odds and I am super proud. Every day with him feels like New Year’s Eve and Christmas day all rolled into one

Giving birth to my son 16 weeks early in 2012 came with a lifetime of lessons, and those lessons have altered my perspective on my purpose and our journey together.  2017 was full of reflection.I can now sum up my 35 years on Earth in two parts – life before my son’s premature birth and life after. To have the worst day of your child’s life be the first day of your child’s life is an experience that touches every part of your being. You are forced to change. You have to evolve. Why? Because you have been given a miracle. Miracles once witnessed require us to become deeper, more aware human beings. BETTER PEOPLE. My son challenged me to find great value in the little things, for they are truly, the BIG THINGS. The wondrous everyday things we take for granted are the greatest gifts we have. There is nothing like peace of mind, waking up each day, and seeing your children smile. For this Mommy, there is little patience for pettiness and trivial worries. My life is all about love and faith.

My 24 weeker is a reminder that each moment, milestone and ounce gained, must be savored and appreciated. Finally, I am no longer afraid of what is waiting for us around the next bend or at the next followup. Our days must be more than 24 hours of “what ifs”.

So, for 2018 I have set a few goals. I call them my Preemielutions.
1. To be more present. The last few years have been a steady sea of medical terms, doctor appointments, meetings and worry. I will not let those things consume us anymore. Yes they will happen – my son has cerebral palsy and vision issues due to brain bleeds and retinopathy of prematurity – but they will not consume my mind. His milestones will not become more important than our memories. I vow in 2018 to enjoy my son more and spend more time just being his mom. I don’t want to miss the amazing part of NOW. He is not a diagnosis. He is a kid.

2. To stop comparing my son to other children. My son was born one pound five ounces at birth and fought like heck to be here. Yes, there are some war scars. In 2018 I will no longer watch other children and wonder when my baby will be able to sit up or play with friends or call my name. His journey is his own, and he deserves to be left to it. Those children did not breathe through a respirator, go without food for two months, or have three surgeries before they were three months old. He did. So honestly, there is no one to compare him to. My kids is in a league all his own. The Survivor League.

3. To dedicate time each day, for just US. He has school, we have work, and at the end of the day we meet. All three of us (dad, son and I) are tired. Some days we make time to play, and others he is asleep before we know it. School for a child with developmental delays is HARD. So, in 2018, I will make more time for us to “chill out”. In that play, he will learn. Every day, we will take a few moments and just be mom and son. I think we both need that.


4. To take better care of ME. I remember when we first brought Jharid home after his five month NICU stay, I never wanted to leave his side. Now, five years later, this has changed. In the midst of it all, I have sacrificed the things I once enjoyed to be the “perfect mom”. I now understand that being the perfect mom means being the perfect me. That “perfect” moms do not exist. And more importantly, if I am not happy, healthy and energized then I can’t give completely to my family. So in 2018 there will be more shopping trips, nights out with friends and hair appointments. I matter, too. This Mommy is taking her life off of hold.

5. To get back to my NICU Prayer life. In the NICU, my prayers could move mountains. And they did. I developed a beautiful relationship with God and it helped me to make it through the saddest times. After Jharid was discharged and our immediate needs were met, I went back to being a part time prayer. I now realize that I still need the power of heartfelt prayer, now possibly more than ever. I think it is important to maintain that level of spirituality. I am cleaning out my prayer closet and giving God more of my time. We have quite a few more mountains to move.

6. To stop apologizing for the differences. No, I am not sorry. I am no longer apologizing for needing time off, for leaving work early, or for not making the birthday party. My son is special needs, and has been his entire life. We are different. And if anyone can’t get with the program, then they can get going. In 2018, I will no longer apologize for being a good mom. I will no longer apologize for not making my son do the things his body and mind can’t handle. He is not a mistake, so there is nothing to be sorry for. When I gave birth I made a commitment to HIM that I plan to keep. Nothing is more important.

7. To continue to spread awareness and share our journey. Write more. Speak more. See the World. I know that every time I write about the experiences preemie families share, a preemie parent becomes more empowered. Family and friends of those in the NICU gain a more realistic perspective. In 2018 I will continue to spread awareness and write the things that need to be read. My hope is that awareness will lead to less premature births, less mothers feeling stigmatized when it does happen, and more babies making it out of the NICU. Each of us can take part in that, by not keeping prematurity inside. I encourage all of you to raise your voices. Let 2018 be the year of Preemie Parent Power. Let it be resolved.

8. To say THANK YOU. For family, friends, and all of those who help us each day I am grateful. Thank you to grandparents who love our son with all of their hearts. Thank you to those who help care for him. Thank you to family for the presents that lessen our financial burden. Thank you to therapists and teachers who work hard with him Thank you to our bosses who work with us and our demanding schedule. Thank you to friends for visits and coffee and celebrations. Thank you to the moms and dads who have allowed me to put their preemie’s journey to poetry. Thank you to God for EVERYTHING. And thank you to everyone reading this, for spending some time with this mom and her preemie. We appreciate you. I hope you find something to hold on to in 2018. I pray you are blessed. And, I would love to hear your Preemielutions. From my family to yours, HAPPY NEW YEAR.


Kaleena Berryman is an author, owner of Praying4MyPreemie, and a writer of personalized poetry for preemie families. Her poem, “On the Day You Were Born” can be found here. On the Day You Were Born



Dear Preemie Dad

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Dear Preemie Dad,

We couldn’t have grown without you.

On the day of our child’s delivery, as our world came crashing down, it seemed to be all about the baby and I. There was so much fear, heartache, anticipation and confusion, and to the world it looked like I was carrying it all. There is some truth to that – the baby was inside of my body and in sudden, real distress. We were nowhere near his due date. There was no more time to wait. It was my responsibility to keep our child inside, and my feelings of failure and sadness could fill the room. Everyone was worried for me, for us, and most of all, for the baby. The baby who was under two pounds and might not live through the night. The baby that we were all so excited for. The baby that would be your first born son and the sweetest gift I could ever give to you. I was scared that you were disappointed. It felt like the unluckiest day of my life.

But you, my love, did not show even a bit of frustration. You held my hand and listened intently to the doctor as he explained the C-section and the reason it had to happen now. In your eyes all I saw was love and concern, intense and limitless. Yes, I was terrified for the baby, but you were terrified for the both of us. In the midst of so much uncertainty, I can still remember how solid you were. You were strong enough for the both of us.

I don’t know if you noticed, but I looked to you to see if I could sense some shame or regret. There was none. In fact, you even seemed amazed by me. We were both holding it together and taking it in, ready to face this remarkable challenge with our son. Ready to fight. All you wanted to do was be there for me and our baby. You wanted to know the odds. You live on odds. And as long as the doctor said there was a chance for everything to turn out OK, you were betting on us. You gave me the courage to believe.
And then, it was time.

When they wheeled me into the delivery room, you stayed right there. You caressed my face and wiped every tear away. Baby, you cheered me on. And when our baby silently came into the world, you saw him before I did. I would not have had it any other way. I was satisfied with the fact that, even if our baby didn’t live another minute, he would know his father’s love. He would have sensed his father’s gaze and felt the gleam of pride in your eyes. He had known my heartbeat for 24 weeks and now, he had become yours. When the doctors rushed the baby out of the room, you turned your attention to me. You did not skip a beat. Immediately, you became a father to one pound, five ounces of son. And that was all that mattered.

I know you were terrified too. I know your heart was broken. I could not control the tears, so you had to. But I know you cried. I know you went into a quiet place and prayed. I am so glad you did. The prayers of a faithful father, availed.

In the hours after our preemie’s birth, all of the questions were for me. The doctors and nurses checked on me constantly. Our family and friends were excited to see the baby and wish him well. You, were third on the list. But not to me. I watched in awe as you made sure I was taken care of and took visitors to see our son. I was honored to feel your protection. I relied on your reports to tell me how our little, little one was doing. Each one was optimistic. Each one was just what I needed to hear.

And looking back on our NICU journey, it is true, you never showed an ounce of doubt. You appreciated all I did for him daily, the endless pumping of milk and the relationship I built with the nurses and doctors. The way I mothered our son completely despite the tremendous amount of anxiety I now carried. You were the one who told me to have the baby shower, to buy the clothes, to step out completely on faith. You were so much more confident than I. And each and every day you sat at our baby’s incubator, you gave him the strength to grow. He got that from you. You made it clear to everyone that THIS little boy, was coming home. You, my dear, never wavered. You gave me permission to trust.

Thankfully, we have a life after the NICU. You are all of the dad I hoped you would be, plus more. You give so much of yourself to our son, and he admires you greatly. When you enter the room, his face lights up. His eyes follow your every move. He sees you the way I see you. As the man who made it possible for us to keep going, inch my inch, ounce by ounce.

Neither of us, could have made it through the NICU, without you.

You were our life support.



To the Perfectly (Imperfect) Special Needs Mom, let me tell you a little something about YOU…

You are the quintessential every woman. Day in and day out, you clear the way and make it possible for miracles to happen. If there were an award for “Mom Who Shines Brighter than the Sun”, you would win it, hands down. The world sees you, juggling your life and the life of your child, making it look so meaningful and effortless. Special, even. Those who have the privilege of watching you mother, believe that you were chosen for this “assignment”, and wonder how you are able to keep a smile on your face and a laugh in your heart. You meet each day with a child who isn’t like all of the others, who isn’t like theirs, and yet you haven’t seemed to fall apart over it yet. Your family and friends often say, “I have no idea how you manage to handle it all so perfectly”.

Well, the fact of the matter is, you don’t. That would defy the law of gravity. 

There is no special strain of DNA that enables you to give the extra care your child demands. You were not born with supernatural strength or a heart of steel or faith that never waivers. What enables you to give so much to you child is LOVE. Good old fashioned, uncomplicated, straight from the womb to the center of your world – LOVE. The same love that drives every mother. The only difference is that your love has more requirements. You have to carry your baby longer because they haven’t yet learned to walk; there are countless doctor appointments that must be made and endless meetings that must be had. You must be more patient, more flexible, more forgiving. More hopeful. Your ER visits may be frequent and your child’s development delayed, so you make it through. You adjust. You take it all in what looks like stride. Because you love. Your child’s happiness is your mission.


You seem like a perfect mother, because you work so much harder than other mothers. But the world doesn’t see the other side. The world doesn’t get to see the imperfect side of you. The way you fall apart in the still of the night when you think about the uncertainty of your child’s future after a new diagnosis. You wonder, when the next miracle will come, that one step closer to “normal”? The questions haunt you. Will my baby ever marry? Have children? Turn in a paper late to their professor or need my help practicing for the school play? More often than not, you are tired, and overwhelmed and heartbroken.You are human.

Life, now means constantly struggling to find balance. Cuddling up with a good book and cup of tea in your room or an extra hour of speech therapy? A weekend getaway with your love or a weekend of doing everything? A day off of work to catch up on things or a day of doctor appointments? You sacrifice the quiet moments more often than not because you hold the same dreams for your child as the parents of kids with regular needs. But to have any chance at seeing them come true, your child has to work harder. So you work harder. You have no other choice.

At your 9 to 5, you are amazing at your job. No one can tell that your heart and mind are often somewhere far away, wherever your child may be. You are forever the new mom just returning to work, dealing with the sadness that you are more needed somewhere else. And who really are you, now? You sometimes wonder if your husband thinks you’ve lost “it”. And maybe you have. Because your free time is never really yours, so there is no time to find “it”. “It” is a lot of work and doesn’t seem very important anymore. Your child trumps “it” every time.

And then there are those dreams of yours, the plans you had for your life before you became a mom. You feel so guilty about wanting those things now. Partly because chasing dreams means sacrificing time with your child, and partly because it is hard to wish for the kind of success your child may not have the chance to attain. You sometimes tell yourself that you no longer matter. That God assigned you to be the mother of a child with special needs so you could put aside your own. You often get beyond those kind of thoughts, you know better – but the struggle is real. The struggle is OURS.

See, these are the things I know because I am one of you. And honestly, these are the things that make me proud to be member of the “Special Needs Mom Club”; the things that set us apart from the rest of the world. Our truth. Selfishly loving our children unselfishly. The world is right to be amazed by us. We do ROCK. We give everything even when there is barely anything left to give. And we are in it for the long haul.

Dear Perfectly Imperfect Special Needs Mom, be proud of the weight on your shoulders. It has made you strong. It has kept you humble. The proof of it is in the gratitude you find, in the smile of the child who calls your name, without ever saying a word. The child that you will forever, and in every moment, pray for.

Live for.

Perfectly. Imperfect.



Be honest, does this sound familiar? You walk into a room with your dirty cell phone and hands, and never seem to remember to disinfect either of them before touching a baby recently released from the NICU. You allow other folks to come in with their yucky palms and give medically fragile babies high fives, as their parents flinch and wonder what germs may have just been hand delivered. You enter preschool classrooms where trusting children are playing and transport viruses from one kid to another. You don’t stay home when you know you have a highly contagious cold.

You don’t even know what you’re carrying.

I saw you auntie or uncle, sneeze into the air behind you (because it is better than sneezing into the air in front of you, right?) while your niece or nephew sat unassumingly in your lap. Oh, and let’s not forget the therapist who, after spending one hour with a baby that clearly isn’t feeling well, goes right over to another kid and commences to stretch them without getting the ick off first.  Yes, these bad habits must go; you are spreading colds and viruses to children you love, who have enough going on. They don’t need to be sick on top of it all. We all need to do better.

sickNot just for preemies, but for all young children. Because when they get sick, although you made the cough and congestion possible, you don’t have to deal with it. The parents do. We have to take off of work and watch them be miserable and sometimes, make trips to the ER. And if our child is susceptible to being hit hard by RSV (a form of cold that wreaks havoc in preemies) it could mean admittance to the hospital.And we know you don’t want that.

Reducing the spread of illnesses is quite simple. Here are five things you can do to keep germs from going wild in your home, classroom or any place where children are.

1. Wash and/or Sanitize Your Hands. When you enter the room, and before touching a baby or child, wash your hands. This is especially important when handling preemies during cold and flu season. Your hands are like a germ housing complex and you are full to capacity. Washing your hands often is essential, whether you are sick or not. Using hand sanitizer between washes can reduce the spread of germs significantly. If you feel you are washing them too much then you are washing them enough.

2. Disinfect Your Phone. In today’s world, our phones are everything. We touch them more than we touch anything else. According to Livescience, cell phones carry ten times more germs than toilet seats. So, even if your hands are clean, touching the phone often is constantly putting the germs BACK. Disinfecting your phone before washing your hands is a must. You can take pictures of the little one and post to Facebook without leaving the common cold behind. Please note: this tip also goes for all handheld devices, computers and the remote control.

th3. Sanitize and Keep Surfaces/Desks/Toys Clean. When you pass toys from baby to baby or child to child, especially if you know one child is sick, make sure to wipe them off with a disinfecting cloth. Better yet, do not allow children to share toys during cold and flu season. Disinfecting all surface areas, toys and desks at the end of the day will also give you a clean start each morning. If people touch it a lot, disinfect it daily. The Honest Company makes a toxin free, baby friendly disinfecting spray if you are worried about the constant use of chemicals.

th4. Stay Away if You Are Sick. A bad cold for you, or your child, could send a preemie to the hospital. If you are sick, take a day and stay home. Refrain from visiting. Don’t bring your sickness to other people’s children.  And if you must come, wear a mask and gloves. Our preemie’s lungs are not as developed as a full term baby’s lungs due to their early birth and the use of oxygen for long periods of time. Take the necessary precautions. We parents will appreciate it.

5. Stop Telling Yourself (and preemie parents) that Getting Sick is Normal. Yes, children get sick. But that doesn’t mean that they need to be sick. Furthermore, it is not your job to determine how sick our child can get. Don’t take the easy road out. Do your part to help preemie parents worry less.

We all know preemie moms and dads are a little extra when it comes to germs. But not really. See, we spent weeks or months and sometimes years, in the NICU. Hospitals, scare the crap out of us. Seeing our baby sick, activates our PNSD Post NICU Stress Syndrome. And if our preemie is entering their first or second winter, a simple cold could be deadly. We come from a world that you know little about, and so you will have to trust us. Our rules and tips do not only work for preemies, they work for your children too. Spreading germs is just plain nasty.

On behalf of preemie moms and dads everywhere, I thank you in advance. Let’s have a healthy winter.


Hope Not Guilt

Hope Not Guilt – A Guest Blog Post by Preemie Mom, Linda Churchill


May 14, 2015 started out as any other day. Taylor (stepdaughter, 6 years old), Logan (stepson 3 years old) and I woke up at seven in the morning. Morning routines were underway soon followed by bringing Taylor to school. This day was Special Friends Day at Taylor’s school so I stayed at her school all morning to see her perform her Spring songs, meet her teachers, and see artwork and assignments she had learned throughout the school year.

I got to sign Taylor out early so we went home, got Logan, made some PB&J sandwiches and went to have a picnic near Daddy’s (Sean) work. We ate lunch and played tag and enjoyed nature for the afternoon. Early evening, Sean left for his second job, and the kids and I went to get a few groceries. We then came home, ate dinner, and we had a little while before bed time. The kids decided they wanted to play with the balloons they got me for Mother’s Day only a few days before. I was sitting on the couch videotaping their fun and laughter when all of our lives changed.

I hemorrhaged. Home alone with two children, scared. Not knowing if I would survive; not knowing if Rylee would survive.

2 3

Five hours later at 11:49pm weighing in at 5lb 7 oz and 19 inches long at 32w 3d our Princess arrived via C-section.

At 20 weeks I was diagnosed with placenta previa and was told that I most likely would not deliver vaginally. As the weeks went on, we started planning on a C-section. At 27 weeks I bled for the first time and bought myself a 7 day admission for monitoring. The day before discharge was also two days before Rylee’s baby shower and I bled again which bought me another 5 days in the hospital for more monitoring. I then was finally sent home on modified bed rest at 29 weeks and well at 32w 3d Rylee made her debut!

When I first bled at 27 weeks a Neonatologist came and told me what to expect if Rylee were to be delivered that early; consult again happened at 28 weeks, then 29 weeks. When I was rushed in on May 14, 2015 I declined the consult. I knew she was going to be born, and preparing for it – well there was no way to mentally prepare for a NICU stay. I learned over the three weeks I was home that there was no way to mentally prepare or know what was going to happen. It all depended on delivery and depended on how well Rylee was doing after delivery to what extent she would need treatment, etc.

I got to see Rylee for the first time a few minutes after delivery. Sean took pictures on his phone of the two of us… me in absolute awe that this little human being just came out of me. She was wrapped up in a blanket – not in an isolette – I got to kiss her forehead, then they took her away. Sean and my parents saw her that night and she was only on CPAP (Continuous Positive Air Pressure). The next morning I was able to go see her, and we brought Taylor and Logan in with us. I will never forget the look on their faces; scared, more accurately terrified. Sean lifted Logan up so he could see her better, Taylor could see her just fine. No one said a word. Taylor broke the silence when she asked if she could leave. It broke my heart. It felt like someone had ripped out my heart and stomped on it when she got whisked away the night before, but now our two older children were so terrified they wanted nothing to do with their baby sister after they were both so excited for her to come into the world before this. I felt like it was all my fault.


Guilt plays a horrible role in a NICU stay especially when there are siblings involved. The questions remained:

  • What did I do wrong?
  • Why should she have to go through all of this?
  • Why is it fair that I get to go home and she doesn’t?
  • It’s not fair other moms get the joy of bringing their baby outside three days after delivery and bring them home.
  • It’s not fair I will miss the “Newborn” stage.
  • What could we have done different so Taylor and Logan would have accepted Rylee that first day in the NICU?
  • How can/could we make it so Taylor and Logan weren’t as scared seeing her for the first time?
  • Mom guilt
    • Not being able to hold Rylee
    • Not being able to care for her
    • Being jealous that the nurses seemed to be more like her Mom than I was.
    • Not being able to have skin to skin; to feed her naturally.

I have learned that guilt will always play a role. The list of questions and feelings can go on and on. But going day by day helps more than one would know until you go through it. Taylor and Logan saw their sister as much as possible and over time it became easier. Over time, Taylor was asking the nurses how much she was breathing on her own, how much was eating, when can the feeding tube come out, when can she wear her own clothes, can I help with a bath. Over time, Logan became loving, caring and over protective of Rylee if they ever needed to do anything to her while he was there he would tell them no until we explained it to them.

While Rylee was in the NICU there were times I would shower and look down, realizing I wasn’t pregnant any longer. There were moments I would start talking to Rylee and then shortly realize I was just talking to myself. When Rylee came home, it started becoming easier. I would hold her – and still do – while she’s sleeping just to stare at her, make sure she’s breathing, talk to her. I talk to her about anything and everything. I guess I may be trying to make up for lost time.

What I have learned though in the short 9 weeks she has finally been home with us is:

  • Time flies no matter what! You fall asleep on the couch for an hour nap and you’ll feel like you missed something! Especially if you are a working Mom like I am, you’ll always miss something. However, reminding myself that missing things is normal, and not worrying about what I’ve missed but all that I have seen and witnessed is more important.
  • Time truly does heal. I now see mother’s leaving the hospital I work at with their newborns or coming in for appointments happy, glowing and pregnant and it doesn’t bother me as much. I am happy for them; I smile; I silently pray for them that they will not have to endure a NICU stay but for the mother and baby to be happy and healthy.
  • I’ll never know if any of this was fair – her birth story, her pain and suffering in the beginning of her life. What I do know though is that she is doing much better now. One day at a time truly has worked in Rylee’s favor.
  • Mom guilt will also always be there. We’ll feel guilty as Mom’s that we missed her first giggle, her first bath because the nurses did it without us, her first smile because we finally got some shut eye; the list can go on and on. What we need to make sure we do is be there for our children as much as possible, so some of these little moments we don’t dwell on missing in knowing we were there for the big ones.
  • I learned to replace the word “Guilt” with that of “Hope”. I hope I get to see all of her firsts, her milestones, watch her grow up. I hope she continues to thrive throughout her life; and I am thankful for seeing everything I have been able to see of her life so far!
  • The most important lesson to any Mom going through this – there is nothing you could have done different. There is nothing I could have done different. No matter how I keep trying to change the story and scenario in my head, nothing could have changed the outcome. Rylee’s birth story is just that; Rylee’s birth story. It may not be perfect, it may not be great, it may not be a nice story to tell. But it does have the best ending any story could have – a perfect little amazing Angel in Mommy, Daddy, Big Sister and Big Brother’s arms and hearts for a lifetime.


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