It’s been an astounding six years, six days and twelve hours since I was welcomed into the preemie mom sorority, and I must say, it still feels like yesterday. Especially moments like the one I just had with my son, where he is smiling and full of happiness, a complete 360 from where we were this time last week. This time last week, he had a fever of 103, and we had made our third trip to the emergency room. Last week he was sick, but never once did he look as bad as he likely felt. Just like in the NICU, when his bowels, brain and lungs were all in turmoil. He rarely let me see him sweat. That preemie strength is a real thing. Six years later, it has stayed with him and been such a blessing to his Momma, who has walked on egg shells since the day he was born. Praying daily that no other disaster will happen, and thanking God daily for His grace and mercy that I am so much more aware of.
I am a mother, like most mothers, when it comes to the way I love my child. We do what we think is best, and we would give anything for our children. Any mother who has a heart, can do this job.
You don’t become different, until you are called.
There is a life that mothers who almost lose their children live, and it involves another layer of love, and hope and appreciation and trauma. The simple reality of having a baby and not being able to take it home, forever changes you. It is exclusive, and strong. If you are a preemie mom, or the mom of a sick child, you know what I mean. It is the feeling that sometimes makes us uncomfortable around other moms, like we are keeping a secret from them that is only shared between us and God. If I could describe it, the secret would be knowing how truly vulnerable our children are, and therefore, how truly vulnerable we are. That the most important thing we can be at any moment, is thankful.
For instance, there is an extra joy in good days. Less of a panic on bad ones. A calm in storms whenever they come and a high in triumph that most people rarely get to know. It comes from losing your peace of mind, and having it back again. It starts in the delivery room, when your baby boy is born at 24 weeks weighing one pound, five ounces. It grows in the NICU, when he learns to breathe on his own, takes a full bottle feed, or makes it out of a delicate surgery alive. It bursts, when he is discharged after five months and finally able to go home – it settles as you worry during the first cold and flu season, hoping to not have to see a hospital so soon.
Some moments I look at Jharid and I feel this heavenly happiness. Other times, I feel crippling grief. Wondering even six years later what life without prematurity and cerebral palsy would be for him. That is another part that makes me different from other moms, feeling the guilt of the real role I played in the start of his life. It creeps up on me, like darkness, and throws me off my life. I find my way back to the me that is required to function, because if I stay there I would not be a good mom. Or a good anything, for it paralyzes hope. And then other, times, I sit next to his toddler bed and just, cry tears of joy that he made it through. Plus, he is so beautiful to me. He’s so beautiful to the world. The emotional roller coaster does not end with the NICU. And if your child’s challenges also follow them, the ride is never ending.
Consider this, a love letter to preemie moms. A letter giving you permission to admit that you are different from other moms. Your entry into motherhood made it so. Yes, you truly do love harder and more cautiously. You appreciate the itty bitty little things. You cry more, and celebrate more and you never forget that your baby’s life began and almost ended. It doesn’t mean we are better, it just means that we exist.
I am a preemie mom. I love, different. I am a holy hot mess. And I would not trade it for the world.