"Protection Equals Deprivation"

That's what our counselor says, anyway. We decided, after Addison's genetics diagnosis in June, that having a few visits with a professional counselor might be a good way to make sure this crisis brings us closer together, rather than pulling us apart. A pretty good idea, if I do say so myself! I've now turned into a walking advertisement for counseling: I've told every friend and family member, more than once, that they need counseling. Fortunately, nobody has taken offense--yet. We love it! We go once a month, he solves all of our problems, our insurance pays for it, and we come away with better communication and problem-solving skills, and the relief of having confessed all of our deepest fears without worrying about sounding stupid. (Although I haven't brought up my phobia of flying insets yet. Some things really are stupid.)

From day one, the counselor has told us that "protection equals deprivation." In other words, if Chris is upset or worried about something but doesn't share it with me because he doesn't want to worry me, then he has protected me, but he has also deprived me of the chance to grow, and to support him, and to stretch beyond myself and see life through his eyes. It's a great concept; we use it regularly around here. Now that I'm thinking about it, I should try it on Caiden with his vegetables:)

I think men tend to do this more than women do; I pretty much lay it all out when I'm upset or afraid or worried. I don't worry a whole lot about protecting Chris from my feelings--I imagine he wishes I did a little bit more. Lately, though, I've been keeping my feelings to myself. The problem is that I've had a tiny whisper of hope for the last month or so, and even though I keep telling myself it's actually the denial stage of grief, I haven't been able to shake it. I don't want to have hope; I want to just accept this for what it is and move on. Yet the hope remains, and it colors everything I do. I look at her and whisper, "Maybe you don't have this syndrome, Addie. Or maybe you'll be the one to put it on the map, because you're not like the other ones who do. Maybe this will only affect your heart, but everything else will be normal." I keep searching web pages about kids with this syndrome, and looking at Addison, and seeing that she doesn't look like them, or have the same problems they do, and I wonder. And I hope. I don't want to. Hope disappointed crushes.

On that awful day in June, the genetics counselor told us to come back in three months. I've dreaded it since then, partly because I never wanted to see her or that room ever again, and partly because Addison has been doing great, and I didn't want to go in and have her tell us otherwise. So I've held my breath, and worried, and prayed, and pondered, and made silent deals with God.

I've listened to our pediatricians tell us she's at or above age level with her development, and I've seen her roll over, put weight on her legs, and babble at her brothers. I've had enough children by now to know that she is, indeed, behaving just like any other baby would. And this is all despite the fact that the doctor told us she'd be behind with her motor skills. Her exact words were, "If she's talking and walking at a year, I'll be shocked."

We went to the appointment yesterday, after first seeing the pediatrician. He told me that he'd be interested to hear what the geneticist says after she sees Addie, because in his opinion, the only thing affected has been her heart. He mentioned that her facial features look just like they're supposed to. Kids with this syndrome have severe feeding issues, slightly different facial features, low muscle tone, frequent respiratory illnesses, and motor, speech, and cognitive delays. Addison, so far, hasn't had any of these struggles, although cognitive problems don't show up until toddlerhood, at the earliest, unless they're really severe.

We walked into the geneticist's office with a pit of dread in our stomachs. We sat down in those horrible, familiar chairs, where we first sat to hear the bad news. The doctor walked in, and measured Addison, and told us she was well-nourished. Check. Then she said she seemed very alert and social. Check. She saw that Addison is rolling over, pushing up on her arms, and putting weight on her legs. Check. She took a picture of her for her records and told us that Addison is beautiful. Check.

I guess doctors are supposed to give out worst case scenarios at these kinds of appointments, until time passes and babies show what they can do. Last time she said things like, "not sure about independent living, maybe could go to regular school with lots of support, probably not walking or talking on time, will need speech therapy." We lived, for three months, with the death of dreams and the realization of worst fears. We struggled to live life normally, and to somehow take joy in her early weeks, all the while watching her and wondering--Who are you going to be? What are you going to be able to do? Those are the same questions every parent wonders about every newborn, but the basic questions can usually be answered. With Addison, every question remains unanswered, and Time is feared. She looks great right now, but what if? It's those what ifs that I've been protecting myself from. I can't even hope for her future, because those what ifs start to invade my mind, and I don't want to enjoy the "now," because as "later" comes, things might not look so good, and I might be crushed, all over again. I don't want to hope that she might be okay.

But I do. In those quiet, early morning moments alone with her, I stare into those bright blue eyes and wonder, and I hope.

The doctor sat down with us, again. This time, she said things like, "definitely independent living, probably not college but definitely school, motor skills don't seem to be affected, facial features look great, maybe there are kids with this syndrome who've never been diagnosed because they have it so mildly, and maybe Addison is going to be one of those." We left with another appointment scheduled for six months from now. As we walked down the sidewalk, we voiced our hopes out loud this time. What if she's going to be okay? What if her future holds more than we imagined? And we made a pact: we will no longer hold back from enjoying these days, in fear that the next ones might be harder. We will relish each giggle, each smile, each milestone reached and passed. We won't forget about her diagnosis, but this time, we'll hope that she will be the one who changes the face of this syndrome. That she'll be the one who later gives hope to another set of parents, as they look at their newborn baby and hear this awful diagnosis, and then see who she is, and what their child might be.

Protection equals deprivation. I always thought of this as protection [from the bad stuff] equals deprivation [from growth]. But I'm starting to see that protection from hope equals deprivation from joy. That counselor sure knows what he's talking about.