Oh where to begin?
Early this week, I was feeling great. My outlook on Lola’s condition was positive. I was feeling hopeful about our move. I was on a bit of an emotional high. A good emotional high. I had lists in my head of things I wanted to improve:
More veggies less carbs
More books less Tumblr
More water less caffeine
More positive thinking less worrying
More exercise less excuses
More change less monotony
More phone calls less emails
I was feeling good about my plans. I began taking an anti-depressant because I knew my mental state was being altered by stress and I was OK with it. If you need help than why suffer? Then on Tuesday (18th) Dr. Luna sent over his official report. What did it say? Nothing that we didn’t already know, but for some reason it sent me in a tailspin. The words I didn’t understand (especially because they were in Spanish), but those words scared me. Then the study he sent via attachment in which the outcomes were very grave. Words like severely disabled, uncontrollable seizures and shortened lifespans. I didn’t understand why he sent that study because it wasn’t even the same type of lissencephaly. I panicked. I immediately sent him an email, but my nerves got the best of me. I had to call him. I was told to call back in 30 minutes and I did. The Spanish wasn’t easy to understand and he was probably perturbed that I was even calling. I just wanted to know what all this meant. Was her diagnosis different? Is her prognosis changed? Does she have classic lissencephaly? How could that be because I saw the images myself. The rest of her brain had waves. I was just so confused. From what I could understand, he said nothing has changed. It is partial lissencephaly stemming from the occipital lobe. And her intelligence? He said her intelligence should not be affected by this type of lissencephaly. But we have to remember that her brain can’t easily interpret what it is that she is seeing so obviously this will cause some hiccups in the way she understands the world.
So this was all good news, right?
If it was such good news than why did I fall into a deep depression for the last two days? On one of our favorite shows, “Dexter”, the main character speaks of his “dark passenger” and this is how I felt. I didn’t know how to get myself out of it. I cried and I cried. I talked it out with my husband over and over and over again. I asked my mom to come over to help me make sense of all of this. Why Lola?
I grieved as I never have before. Not when my father died, not when I was raped. Perhaps it was years of trauma finally coming to surface, but I let my heavy heart weep. I didn’t eat, I wasn’t sleeping, I felt as if I was slipping further and further away and sadly, even the sight of my own daughter couldn’t snap me out of it. My own daughter. The little person that is my world. The little girl that I would give my life for yet here I was doing nothing to help her. If anything my negative energy would be damaging to her.
Yesterday my mom asked what could she do and I simply asked for some time to myself. I needed sleep, I needed to eat, I needed to wrap my head around this reality because the sooner I did, the better off we would all be. So I laid in bed all afternoon. I slept a good four hours and I managed to eat a bit of food. Then Rob offered to get up with Lola in the night and I slept even more. And in those moments of half-awakened slumber, I didn’t think about the future. For once, I just tried to let my heart accept that our lives will always be different and you know what? Different is OK.
Lola is 1 in 85,470. That’s a pretty crazy number. And why Lola? Well Lola was blessed with two parents (despite my occasional mental breakdown) who are intelligent and who have all of the right resources to give her the best life possible. So why not Lola? Lola won’t know any different. Lissencephaly will simply be part of her life so the real person that needs to accept it is me.
While it is hard to see the “big picture” yet, I know there is a reason for all of this. But in this time, we get to celebrate Lola’s milestones. They are not surpassed or overlooked because that is what is to be expected. They are rooted for and applauded as every milestone is an important one in Lola’s world. No longer do we need to follow a book to tell us where our child should be because Lola is writing a book all of her own. Because of Lola’s vision impairment, we will always be explaining the world to her. While we will help guide her into independence, she will know that she is never facing the world alone. We will always be there to support her, to guide her, to teach her.
And while I was writing this post, I received an email from Dr. Luna. Our phone conversation still left many questions unanswered and so I wrote to him once again for further explanation. Here was his response:[quote style=”1″]Dear Meredith: I want to offer my experience in this field, which arises from having treated many children with similar problems. Perhaps this is more valuable than cutting scientific information you can find. Remember that these conditions are heterogeneous and sometimes what is being reported in this or that article may not correspond to what is your daughter. On the other hand are problems even in intense research and still not know much about them. I can share you the following assurances:
1. I have seen many cases of classical lissencephaly, severe, extensive, total. None has experienced a shortening of its lifetime, with the exception of Walker-type forms. Lola does not have that. In such cases the commitment to development is very important.
2. Lola has a partial form, which predominates in the back.
3. Lola has a delayed psychomotor development, but much better than ALL of the lissencephaly I’ve tried.
4. For that reason I think we have a much better prognosis than any case that Lola is a girl why can fight and accomplish much.
All good news, right? Right.
While this may not be the last of my dark days or my own personal pity parties, I am glad I’m getting them out of the way before Lola is old enough to understand why mommy is crying. Other moms I’ve spoken with say the first year is the hardest and that acceptance does indeed get better with time. So instead of beating myself up for letting myself get so low, I’m going to just accept it as part of the process. I have a bright, beautiful, healthy, loving little girl. And while I haven’t been totally accepting of this new diagnosis, I’m trying and that’s all I can ask of myself. But I will try harder because no matter what medical phenomenon is thrown at us (although I pray this is the last of them), I will continue to love her more and more every day. Ella es mi vida.