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

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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.

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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.

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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

 

 

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Dear Preemie Dad

daddyandi (2)

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.

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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.

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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.

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