18.5 years ago…
July 1998. I knew from the moment I found out I was pregnant with twins that it was either going to be a miracle or the biggest heartbreak of my life. Fortunately, I was lucky, I got the miracle. And yes, at 10 weeks premature, miracle is the only word that fits.
My children came into this world and faced instant struggle. Plans didn’t consist of days or years in advance, it was literally a heartbeat at a time. Because everything could be seemingly fine one second and the next, your child is crashing, your on your knees crying and watching the experts perform CPR, praying to whatever will listen to you not to take your children.
It’s a rollercoaster, a bitter sweet set of emotions. The successes bring on the highs, and the set backs bring you to your knees.
Nothing, not even medical school, could have prepared me for the war with the universe for my children’s lives. And yes, I know how dramatic that sounds, but that’s the truest version of reality for a mother of premature babies.
After 18.5 years, my children have successfully graduated from high school, and the one thing I have learned is perfect does not exist and that’s OK.
I also learned that something of this magnitude is impossible without a support system, especially when you have two healthy children who just don’t understand why we can’t go play in the world they so desperately need to explore and learn about.
It’s OK to ask your friends and family for play dates. It’s OK to say I need help, it’s OK to impose upon others availability. It’s OK, as long as you know that while they are in the care of others, they are safe.
It’s also completely normal to have separation anxiety, as you have experienced a form of shell shock. You’ve seen the most desperate fight for survival play out before your eyes and know just how powerless that can make you feel. You have had to learn a whole new language that not many understand. You find that you became a dictionary somewhere along the way, though the memory of how is still a blur. Your so focused on one heartbeat, one breath at a time that you don’t even realize how much you change in the days of NICU.
And well, no one tells you that going home is terrifying. The fragility of the situation is still there without the experts telling you what to do. There’s knocks on the door from complete strangers to come check the baby’s weight and monitor the level of needs the household has.
And seemingly, from out of the dark, an angel arrives. Elma. Her name was Elma. She was the nurse assigned to my children’s home care when failure to thrive was still a continual beast beyond the NICU. When dehydration threatened the lives you have already fought so hard to maintain. When you’re covered in vomit with such a magnitude of force that you struggle to comprehend how so much can come out of something so small. And, you learn to trust your gut above and beyond what the experts assess.
Over time, the bond becomes so strong that it’s almost like having X-ray vision. You know, you just know something is wrong, and if you wait till tomorrow, tomorrow may never come. You learn to fight battles others just cannot comprehend. You become a warrior, only your weapon is words. No swords, no fist, no violence. You learn to communicate with the expert class and realize that even they are not perfect. For not one could understand the bond that leads to just knowing something is not right. The sense of paralysis when you’re trying to explain what they clearly cannot see or measure.
You learn to trust your judgement, because somehow, the warning bells screaming in your head, end up being accurate.
And ultimately, this is a walk of triumphs and failures. That one good day can get you through a week of bad days. That when you feel weak and panicked, it’s OK to hide in the bathroom, crying, because it’s all you can do to deal with the magnitude of emotions flowing through you, because ultimately, somehow, you feel like it’s your fault your children are struggling so much. Whether it’s because of the fact that it was your body that was charged with the safe nurturing of your children, or because you feel selfish for asking your children to fight through such struggle at such a tender pace of development.
Regardless, it’s completely normal to have your emotions send you to a corner to cry. It’s relieving, a reduction from the stress and anxiety coming constantly with such a brute force.
And, yes, over time, the fear reduces. Life moves forward. And one day, if fate is on your side, you will celebrate the graduation ceremony of childhood.
The milestones are different, but they are worth it.
And, I have to add this…just because…
These two girls on the left, the eldest of my children. They don’t realize it yet, but their love and time also greatly influenced the success of their siblings. They helped them reach those milestones because they had an example of what they were fighting so hard to accomplish. They were teachers far sooner than they were ready for, but teachers they were. Whether it was showing how to walk, or how to be a big girl out of diapers, etc, they were the how to guide long before the time of google.
So, to any mother’s who are currently in the beginning stages of this journey, it is possible. And, well, the definition of impossible is about to change for the better. Good luck.