-{{ I don't know what exactly did it but I managed to make a staff that matched Raskol's color palette/aesthetic and I could cry, lmao }}-

Zaza's 8th🎈🦄Birthday to the movies🎬 It was her first time and we had a lot of fun! 

To My Beautiful Daughter..

I'm not sure how many of the words you understand, but I know you feel my love through it all. When I breathe your scent in, when I kiss your forehead, when I rub your cheeks, or your little belly - your cheeks are my favorite because they are always so warm. They remind me of my great grandmother’s love.  I love you in ways that scare me. To the point where my eyes fill up with tears. I'm scared for you all the time. I turn my head to the stories. To the media. I try to stay out of my feelings, so I can push forward for you. In my feelings, I'd probably drown with sorrow but I'm growing to be the most positive person I can be, not only for Mama, but for both YOU and your BROTHER, too. He doesn't deserve to feel my anger for something that is not even his fault. It's no one's fault that you have to go through what you do. I'm just being selfish, right now. I feel like b/c I made you, I deserve you forever and ever. Some days I feel so cheated, like God betrayed me, like he or she is punishing us, but I can never figure out why… “What did we do so wrong?” “Was it that time when…?” “What did I do to deserve this?” “Why her and not me?” “Is this your way of showing me something?” “What was it that I was not seeing before, that you had to go and take it out on my baby?!!” All of these are pretty cruel questions to torture yourself with. I never want you to go through that or feel like because I have asked those questions, that I don’t want you or that I don’t love you the way that you are. Some days, I just feel resentful, and then I feel bitter towards people who don't even deserve to "have what they have". And I”m not even in the right place to say who is to have what they have! I feel that way about your brother too, with his situation (& his dad never keeping in touch), and I have to accept that one day, he's not going to be around me all the time anymore, and I can only hope that b/c of our family size and lack of support, that he will stay close to me - without him I might feel like I'm actually going to be more lonely and heartbroken than ever before. You kids are my heart. I always want to be a part of your world. 

& I want you to be mine forever, But the reality is that you're not promised to me. Neither of you are. Not for today or tomorrow. Your underlying condition makes things difficult to project the future, but I try not to think of that too much, because.. I can see you, the REAL you, under it all. Aicardi holds you back. It suppressed your spirit, but I can see it is COLORFUL. I hate that kids can't be kids b/c of limitations that are no fault of their own. It angers me b/c we can't fix it. No doctor can truly heal this. The damage is done. No money can buy or replace this. 

We can only look inward for the type of healing that we truly need.. I wish you could see it. How you look to me, from my eyes. How I felt about you, from my heart. I wish you could see how beautiful you are everyday. I wish you could hear your voice, like how I hear your voice.  I wish you could tell me you love me, your brother wishes he could make you laugh and hear you call him silly names and know exactly what you want for your birthday. I wish you could hug me, even giggle or smile at me, sometimes. It's only around your bday when I notice these things. I hate it. I would never wish this on anyone. Not this pain. Not even my worst enemy. Your birthday is supposed to be joyous, and yet i'm crying in the bathroom, writing this, b/c I don't even know if you understand that it is your birthday. I bought all these things for ME. You are at peace, just the way you are. I’m ashamed of being so vain. This is a personal problem, I suppose, because you are who you are. No difference to you. It crushes my soul and I suppress these types of feelings, so I don't have to go through the waves of grief all over again. I know no one will truly understand, until they’ve been through it. It's the same pain I felt that day, in the bathroom of Wake Med OB/GYN, right after they told me you'd have brain damage and “everything would be uncertain”. It's the same fuhcking pain every year, I’m sorry Zaza, I don’t mean to curse. I almost would rather stop breathing, than feel that pain again. Thank God I didn't lose you completely.  Thank God I get a chance to be your mom, even if I'm not perfect. But here I am. Your 8. Fuhcking 8 & after searching through Pinterest for an entire 2 hrs, searching for a birthday theme to light up your world, l realized I was searching only for my vanity. For my feelings. This shit breaks me down, in a way that I'd never be able to talk about out loud, without fear that I'd probably choke on my own tears. That's how I know I love you Zaza. I'd give my life, if it meant you could live a normal life or to live I wanted to give you. I'd give my lung if it meant you could breathe normal. My eyes if it meant you could see us smile and appreciate the beauty all around you.

My brain, if it meant you could understand how many people are rooting for you - if you could just tell me you love me, If you could understand just how much your little family wants the best for you. You could have all of my organs,  if it meant you could live a longer, healthier, more active life. BUT we are learning to live around it, and we are learning that normal is only a perception. We are healthy working with what we have, and that’s all we can do. 

BE CONTENT.

We are thriving on our own.. making a difference with our own story. We have our own way and it works for us and its productive, although can always improve, right? We just had to find our own, and it only took us forever b/c we have limited resources. 

But Miss Azana, YOU are strong, baby. Stronger than most of us out here. Stronger than most warriors, standing on their own 2 feet.  

You are Courageous. Sassy. Stylish. BEAUTIFUL AS EVER! Loving you teaches me that this world ain't for the weak. Loving you teaches me that love is not supposed to be conditional. Loving you teaches us that if we can endure your life, as a family, and if you can endure your own pain that you’ve had to go through already, then we can pretty much get through any little thing. Loving you teaches me patience, even though I don't want to be patient. Loving you teaches me how to love myself, how to love other people, for everything they are, and in between. You are our little LION, and our pact is exactly how it is supposed to be. 

I love you, and I truly believe if I can get strong enough, we can be together for a really long time. Looking at some of the other Aicardi girls, with the same abilities as you, and seeing how they are thriving into women - we can be like that too. There was a young lady I was reading about, who is 25, still lives with her parents, and she gets to go to the beach regularly, travelling all the time with her Mom and Dad. And even, the parents still vacation a lot with friends (as a couple) for respite, and their entire family sometimes, so the young lady is always thriving and happy and smiling, her brothers all go to college - LIFE IS GOOD FOR THEM..it’s not about “looking perfect”. You can see it’s hard, but you can also tell that they are happy. AND We can be that. We just have to keep believing in each other. And believing in you. 

……..I believe in you. I will fight for you. Even if my heart hurts. It's just a feeling. My feeling. And it will go away, like the other feelings went away. For NOW, you are HERE, and I’m going to LOVE YOU until I'm no longer.

Happy 8th Born Day, Miss Azana Neorah❣

You are, and have always been, my ULTIMATE LIGHT. 

(P.S) It was so hard to write this (back when I did, originally), and even harder to share right now… but I wanted to do this because, unlike most blogs… I wanted to share something raw from my heart.. Something that I’ve been dealing with for some time, that always eats at my spirit around this time of year because I know that there are other parents who feel this way around their kid’s birthday too, and I want y'all to know that  - YOU ARE NOT ALONE, in feeling that way. <3