Possibly, it was the moment you realized you would soon become the parent of a preemie child, the moment your pregnancy came to an end, and even though your heart was broken, you decided to believe.
Maybe it was within the first few days of your child’s life, when a doctor gave you the darkest odds for your little miracle. And even though it did not look promising, you decided to sit by that incubator, and pray, anyway.
It could have been a few weeks into your NICU stay when a nurse, however well intentioned, handled your already fragile baby too rough for your liking, sparking an instant flame.
Or maybe it was a few days after discharge from the NICU, when a family member neglected to wash their hands before reaching out to your baby who doesn’t need to see a hospital again, that brings it through.
All NICU parents have that moment, when we first are willing to take on the world and any army to protect our little fighters.
The moment that leads us to our preemie parent advocacy voice.
The preemie parent advocacy voice is our most important tool, a trusted companion on the road to raising a child who is born too early or with any kind of special need. That voice is our guiding light, enabling us to take part in the care of our babies even when their life seems out of our hands. It encourages us to ask questions, search for answers, and challenge anything that doesn’t feel right in our spirits. The preemie parent advocacy voice saves lives. It can help save your baby’s life. And after the NICU, it becomes even more valuable.
But it must be strengthened.
Each new stage in your child’s life will require your oversight.
You will have to speak for them.
As the time goes on, every decision and declaration will become more and more difficult. Whether choosing procedures, surgeries or schools, a day care or therapist, to go on a trip or to stay home from a family gathering, your preemie parent advocacy voice must be willing to increase in volume when needed. If your child is faced with delays, that voice will be an integral participant in school meetings, hospitals, and in the presence of specialists. Your voice is powerful. You can never doubt it. You must always trust it.
Like any tool, your preemie parent voice must be sharpened. Your child is counting on you to make the best choices and that takes work. Preemie parents don’t know everything, and we definitely aren’t medical professionals. Therefore, in order to work most effectively, the preemie parent advocacy voice has to be developed. There are five rules to truly tapping into your preemie parent power:
- Your preemie parent advocacy voice must be fearless.
You are your child’s best advocate. Never be afraid to do or say what needs to be done or said. And don’t apologize for it. When I first brought my son Jharid home and enforced strict rules to prevent him from getting sick, I did so with consistency and unapologetically. If you love my child, you won’t have an issue with protecting him. You know where he was for 5 months. Never be afraid to speak up.
- Your preemie parent advocacy voice must be informed.
You cannot guide if you have not read. READ. Assess the options. Talk to professionals and fellow preemie parents. Buy the books. Become a parent expert. Take the time to inform yourself no matter what the issue. You will be smarter and most importantly, your voice will be more confident.
- Your preemie parent advocacy voice must be respected.
You are the mom. You are the dad. Your wishes and decisions must always be respected. Anyone who doesn’t respect your parent voice is not on your child’s team and should be ejected from the game.
- Your preemie parent advocacy voice must be willing to listen.
Don’t be a know-it-all. Knowledge comes from listening. Doctors, nurses, family members have something to add. Listen and consider. People will respect your voice more if you also respect theirs. Don’t listen to speak, listen to learn. Your baby benefits from perspective.
- Your preemie parent voice must be worked on with love.
Use it. Inform it. Cultivate it. Share your knowledge with others. Research and attend meetings. Try new things. Stay open minded. Work on your voice so that when needed it will be STRONG. You are your child’s best advocate, so be the best advocate.
Becoming a preemie parent brings on strength we never knew we had. The situation is often life or death for our precious babies. Honor your preemie parent voice, and it will serve your baby well. Your preemie parent voice is one of the greatest forms of love you will ever be able to give your child.