I have really missed writing these past few weeks.
It has been a stressful few weeks. We all came down with the flu, our washer broke and I had several doctors appointments I couldn’t put off any further. So between squeezing in time for the laundry mat, being sick as dogs and squeezing in blood tests and pharmacy, doctor and urgent care trips on top of my pumping every two hours and once we were better trips to the NICU…it has been crazy.
Add to that Noah broke our laptop (he figured out how to unscrew his sippy cup and drowned it in apple juice) and it destroyed all of my half written blogs and thoughts as well as all the billions of pictures I had saved on there. I just couldn’t bring myself to draw on new ideas or try to rewrite those words.
I didn’t care that he broke the laptop…this entire journey has given us perspective. Noah was ok, laptop wasn’t…only one of those things matters.
Writing has always been cathartic to me, but even more so now. It helps make it normal. Everything in our lives is so abnormal. Putting our experience out there gives it a place, a voice and helps stop it from consuming us. At times it feels like this experience is eating us alive.
When we were pulled into this black hole of becoming not just mom and dad but becoming preemie parents our entire perspectives changed as parents.
Instead of dreaming of our children’s future, what sports would our boys play… rather would they even play sports or would they join the choir or band….or would they be book worms and get lost in books instead. What would their first words be? What will they dream of being when they grow up? Who will their friends be…who will their first loves be?
Now we can’t look that far ahead. Being a preemie parent you are forced into the present because if you wonder too far into the future you’ll lose your mind.
Thoughts into the future are no longer viewed through rose colored glasses as they were with Noah. We worry will Aiden be able to play sports if he wants to? Or will he be in a wheel chair? If he is, will it break his heart to see his brothers, his twin brother running around? Instead of dreaming of first words, we worry if he will be able to even speak. Will Aiden be able to dream? Will he be able to make friends? Will he ever find unconditional love outside of our family?
These are our raw fears. No matter what his future holds, wheel chairs, PVL, cerebral palsy, it doesn’t matter. He is perfect. But as his mother I can’t help but want him to never struggle. To never have to overcome such hurdles. With Aiden’s brain injury (PVL) due to becoming so critically ill we have no idea what his future holds. He could have very mild effects to completely debilitating. They can only tell us that early intervention is our best resource in battling whatever challenges lie ahead.
So instead of focusing on all the what ifs we have to focus on all the right nows and things we know.
Right now he is breathing. He smiles when I sign to him. He loves his pacifier. He is feisty. I know he dreams because of the sleep smiles he makes when he drifts off in my arms. I know that he is strong and I know that he is loved.
We will celebrate all his milestones. Every single one. Every single piece of good news…heck we even celebrate no news…because it isn’t any truer than in the NICU sometimes no news is good news. Today he went up .5mls on his feeds! Every .5ml he gains is as exciting as when Noah took his first steps. Way to go Aiden!! You are up to 13mls buddy!!!! You are doing such a good job!! I can’t wait until you are eating us out of house and home and you roll your eyes when I tell you (again) how I celebrated when you made it up to 13mls of food an hour!
It is hard to not ask for goals and timelines from the doctors. I am not a good ‘waiter’. When I was diagnosed with thyroid cancer the very worst part, above the radiation and surgeries was the waiting. That seems like a walk in the park as compared to the waiting that has come with Aiden and Evan’s journey in the NICU. Waiting is a cancer in and of itself.
I like to plan. I research too much on Dr. Google. I worry, a lot. I am scared.
This entire situation is forcing me to be someone I am not. It is forcing me, like a square peg in a round hole, to realize we ultimately have no control.
Which to me (a control freak) is paralyzing…especially since it is over my babies.
So instead of focusing (panicking) over all the millions of things I cannot control right now, I will focus on what little I can.
Because the little bit I can control is the most important part.
While I don’t have an M.D. after my name I am mommy.
And I think that I have the best medicine of all: love.
Aiden and Evan’s support page…please pray and share their story..there is no such thing as too many prayers. We only ask that people keep them in their prayers and send them well wishes.