I am the mom to three premature babies. One of which resides in heaven instead of in my home. Explaining my life and our journey, as a preemie mom and loss mom ,is hard. Some will never understand, others will try and fall short, and then there are those who have walked a similar path where no words need to be spoken for them to understand. Those people can read you face and understand your story without even uttering a word.
The fear, pain, guilt, and emotions are often very hard to put into words for people who have never lived it.
The fear you feel as you watch one of your children breath with the assistance of a machine. Or the fear of another of your children arriving 15 weeks to soon. You know the statistic. You know babies need 40 weeks. That fear you feel when you realized that this child would not be going home. The fear you feel when you finally getting pregnant again after all this, and arriving to the hospital at 32 weeks. Your child heart rate keeps dipping below the "normal" range signaling alarms that stop your own heart from beating for second. The fear during all three of these events when to room would turn to chaos. To many doctors and nurses. All throwing out information and your trying you hardest to grasp ahold of something and yet all you can think about is weather or not you will be bringing this baby home.
The pain and guilt you feel, to sit back and watch someone else care for you sick child. The guilt of what you did wrong. Could you have done something different? Did you drink enough water? Eat the right foods? Get enough sleep? Work to hard? None of which you will ever have answers to. As a women your body was designed to carry a child and give birth, yet you body failed not one, not twice, bit three times. You do everything you can just to stay afloat!
The emotional toll it takes on you is unbelievable. The rollercoaster ride you feel like your on forever. It is full of more ups and downs than you imagined and just when you think you are coming around the corner to the end of the ride you take another climb to a bigger drop.
Sometimes you welcome questions about you baby, while in the NICU and once your home. Other times you wish people wouldn't notice your child is smaller than most, gets sicker more often than most, or that he or she isn't meeting the milestones like other kids.
As a loss parent it adds a whole new realm to the emotional rollercoaster. Simple everyday question can take your breath away. "How many kids do you have?" Do you take the easy way out and say two boys and feel the guilt in your heart, because you never want to not include her, for she is and always will be your child. Or do you say "three" and explain why you will only be tucking two into bed tonight? Want and instant conversation killer... talk about your baby that has died. The conversation will be over and usually includes a look of pitty and awkward moment of silence. Sometime the conversation ends there, other times it will end with a stupid responce from the other person "well it was probably for the best", "your young you can try again" or my favorite "well at least you have two boys" (like having them to makes us for losing her) And that's when the gloves come off and it take ever ounce of your being not to start swinging. See the conflict of that simple question "how many kids do you have"?
But as time passed the scars from the NICU (both emotional and physical) begin to fade. Thier scary stories are now a testament of how strong they are and how far they come. Their stories give hope to other moms starting out on the preemie journey.
As a loss parent with time the pain subsides a LITTLE. From time to time the waves hit but you learn to manage those waves. You say their name as much as you can, ever chance you get. You try to give their life, no matter how short, a purpose. Somehow believing if there is a purpose then it was all worth it. But its never enough. You just learn to accept the life you have been given.
There is no book that tells you what to do when your child is born to soon. There is no book to navigate the pain, fear, guilt, and emotions of having a preemie child that struggles to live or a child that you never get to bring home. You simply navigate the best way YOU know how. Take it day by day, breath by breath. Maybe even reach out to others who have walked similar paths. Remember not expect to much and not to be to hard on yourself. Choose to make each day packed full of memories good and bad. For the past has shaped you into who you are today. So today you can choose who you will be tomorrow. How will you let today shape your tomorrow?
Nicely written, Samantha. I had one of *those* days today. Just have to push through - thanks for the reminder.
So beautifully written.
Thank you for sharing this Samantha. So beautiful and true.
Beautiful words! Thank you for sharing. Hugs
This post is incredible Sam. I wish sometimes we could just hand out little cards with info like this on it to everyone we come in contact with. This way at least they would understand a little better. Sending you lots of extra hugs this week and always.
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