I Remember

Yeoooow! It has been a month.

Yeooow!!

Okay, but I return, particularly inspired, and with child napping (albeit snotting and feverish).

Today, I remember.

As I was perusing through emails just now, the waft of times past returned, and I thought, "I remember that."

I am a subscriber to an email list-serv for an ROP (retinopathy of prematurity) support network. It is a group of parents/grandparents with children who have ROP and adults who have been living with ROP their entire lives. In the early days of Camille's diagnosis, that list was my salvation. I still look to it for guidance.

Going through the diagnosis days of the ROP journey was an extremely (if not one of the single most) difficult times in my life. ROP is quite unique in that it doesn't really rear it's head until a preamature baby should have been full term. For most kids with significant ROP, this is roughly 3-4 months after their births. A horribly cruel kick in the pants if you ask me. As parents, this means that most likely, you have survived the NICU, or at least nearly so. You have lived the day-to-day rollercoaster of life vs. death....yep, literally. You have wakened to the dreaded 3 a.m. calls and thrown on clothes to speed into the hospital, only realizing at 5 p.m. the next day when you are finally able to breathe that your hair still isn't combed or your teeth aren't brushed. You have been through the step program of high frequency ventilator to conventional ventilator to C-Pap to oxygen through nasal cannula to finally oxygen free. You have seen your baby receive more medications that you have in your lifetime...medications to keep blood pressure up, medications to control pain, medications to sedate, medications to close holes in the heart, fake food through IV's, antibiotics, antifungals, caffeine to stimulate breathing. You have gradually waited patiently for your baby to learn out to eat....one milliliter by one milliliter until they are taking full feedings through....you guessed it...a bottle sized more appropriately for a doll than a newborn. And FINALLY...you breathe a sigh of relief as you get to go home. Yes! Rest for the soul.

And then the cruel irony sets in less than a week later...."It looks like your baby is losing her sight rapidly and we're not sure we can do anything about it." You've got to be kidding. (Insert words of choice here).

And as the road trips begin and the eye surgeries commence and you live day to day just waiting for news that to you at that time will make or break your future and your child's future, you look around. And there is no one like you in the world for all you know. Blindness in babies in a very low incidence disability.

That's where the ROP group came in. I don't know when I stumbled upon the ROP list serv, but it was my first contact with the visually impaired world and the first time someone said, "I know how you feel and I know what you're going through" and it was actually true and I actually knew it. It was the first time I really felt validated and not crazy. Thank goodness...there were others out there who felt alone, crushed, fearful. There were veterans who said, "I remember those times," and they had somehow survived and even had words of wisdom that I could hold onto.

As I was reading some new posts on the list today, I had the sudden realization that I was reading about "former me's." I was now reading about people with babies who were just starting the surgery circus with more unknowns than knowns, more fears than hopes. And my heart goes out to them, and I can now say, "I know how you feel and I know what you're going through. And it doesn't seem like it now, but there is so much hope to be had. Regardless of what the surgeons can or can't do."

I can say this not because of any inner strength of my own or anything I have done or accomplished. I can say it only because I have this amazing 4 1/2 year-old who teaches me.

I look at her as she stands today, and I see what she has become capable of, despite mountains of challenges and setbacks. Despite pain she has endured which we cannot comprehend. And I have to believe, because I see what I see today, that she will continue to amaze us with her ability to learn, to charm, and to love.

This week has been all about valentine-making. She LOVES to braille. She would get on her Mountbatten and braille, braille, braille all day long. And spelling....how this girl loves to spell. Her beloved teacher of the visually impaired, Ms. Carrie, took the reigns in the fall and saw that Camille really needed to start intensive Braille instruction outside of preschool time, and Camille has responded to her guidance with more zest than I would have expected). This great relationship coupled with technology that Camille loves (a shout out to Ms. Carrie for working around obstacles and a crazy, pregnant mom to get it in the classroom so early) and Camille's love of the written word, has resulted in a love affair of sorts.

Today, since she was the snotting and feverish one at home, she got on her Mountbatten Brailler and, in braille, she signed her valentine cards to all 40+ people in her two preschool classrooms by herself. She was so proud, and so was I. And when we were done, she made a valentine card for Dr. Cicero and her "grown-up" friend Ellie, one of the nurse's daughter's, before we headed off to the doctor's office.

And so as I was reading the messages from the new moms and grandmothers on the list serv today, I had an epiphany that in some ways, we have come out the other side. Sure, challenges remain. Certain heartache will ensue. But that Camille...she allows me now to be the one to pass along words of wisdom (when I'm not still searching for them myself) and say, "There is hope...and here is living proof."