2019, BRING IT ON.
This is my 7th 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, seven 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 big 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. .I can now sum up my 36 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 2019 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 2019 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 2019 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 2019, 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, seven 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 2019 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 2019, 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 2019 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 2019. 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