First of all, please let me apologize, as these thoughts are the random compilations of a year's worth of musings that I have tried to edit and put together in an effort to help those of you who want to understand what my life has become in one short (and in some senses very, very long) year. So bare with me if they are disjointed or not clearly articulated. I also want to say that when I started putting this together, I intended it as a love letter, but I have found it slip into some really dark places along the way, and I have decided to leave those thoughts in because they are the truth, and you cannot fully understand my internal struggles without them.
When this all began, there was a long period of intense grief. As I started to get over my overwhelming heartbreak and turned to the task of living this new life, I started to notice the little things around me that were making my life possible to continue, in a way I had never noticed such things before. It is in the compilation of these little (and not so little) things that I am seeing the ways God is helping us get through. Please don't mistake me. I am still very angry. I know a lot of you are Mama Lions, just like I am. You want to fuck with my kid? Worst mistake you ever made! But what do you do when the one who fucked with your kid is God? What do you do when the doctors tell you that the reason your child is this way is because something went wrong with her genetic sequencing at the exact moment of conception? This kid never had a chance. At Passover we sing a prayer called "Dayenu". This means, "It would have been enough." We say to God, had you freed our people from slavery, but not lead us out of Egypt, Dayenu. Had you led us out of Egypt, but not parted the Red Sea, Dayenu, and so on and so forth, all the way to the Holy Land. While I acknowledge and am thankful for the gifts I have received, I have not reached the point where I can say to God, "Dayenu". The only thing that I can see right now that would make me say Dayenu would have been a healthy child. This is a spiritual struggle for me that I continue to try to answer and accept.
I have lost some friends over the past year. I expect to lose more. Only in a few cases would I say this is related to them not being able to deal with Anabelle's condition. More often it is a result of the fact that I am not able to be the friend I once was. I don't keep up with people as well. I forget important dates, I miss functions. Even when I do see or speak to people, I don't listen as well as I used to. My mind drifts. There is a sadness about me that is always present. I feel it, I see it, and I know others do to. It makes it difficult to be around me, and I understand that. Some days I am okay. Some days I marvel at the miracle that is Anabelle's soul: her smile, her laugh, her sense of humor (and those who know her best know I am not making that last one up). Other days I am terribly, horribly not okay. Some days I wish I had been satisfied with one healthy, happy child and never even thought of having another.
On the other hand, I have also gained friends in spades. Not just my anycephaly family, but people who were already in my life who really stepped up and reached out to my family, and have become invaluable to me. But at the end of the day, there is a lonliness that I just can't seem to shake
It's been one year since I've known true, unfettered happiness. One year since I've been excited or hopeful. One year since I've really and truly FELT anything. A year ago I had hope. There was still a chance that Anabelle was going to be one of the "less affected" kids. The doctors would give us no concrete prognosis, so I was able to fantasize that she would be able to walk and talk, at least to some degree. Now I know that this is not in the cards. At 1 year, Anabelle cannot support her own head. She cannot sit, cannot roll, cannot focus her eyes or track, cannot reach for a toy. She will continue to make small progress, but she is never going to be the active, chatty little girl I still held out hope for one year ago. That hope is gone. It is so hard to stay positive when I don't even know what I should dare to hope for anymore. And if there is only one thing I make clear in all this, I want it to be this: I am not upset about the child I got. What I am is in mourning for the child I expected to get. For the life I was trying to build that will never be. For what the loss of that has done to me, my family, and especially my children.
There are many children in my life that I love only slightly less than my own: Abby, Sophia, Juliet and Mia, Johnathan, Caileigh and Piper, Talia and many more. But something unique happened when Anabelle's condition lead me to reach out to others in a similar situation. I found myself falling in love with so many more children, many of whom I have never even met in person: gorgeous Brooklynne, the wonder dwarves Claire and Lola, Brady: the hardest fighting little man I know, sassy Miss Gracie, Anabelle's best big-boy friend Will and his siblings, (who are true sassy, insightful kids after my own heart), my best red-head Sammy and her beautiful sisters and hundreds more. With this pure gift of love and undying support, however, comes a price. Every time one of my new babies is suffering, I suffer. Every time one of them becomes an angel, I die a little too. This roller coaster of emotions is a totally new aspect of my life. These situations were not something that existed for me one year ago. One year ago, I had ONE family friend who had lost a child. Now I know dozens. This new reality is difficult.
Many of my special needs friends have told me that I will find a "new normal". We haven't gotten there yet. At least not one that I am comfortable with. My life still seems hard. There are pieces of every single day that I wish I didn't have to do, or pieces missing that I wish I had. And to be honest, I'm not sure I want to reach that new normal. Because what does that mean? Does it mean I've accepted everything? Does it mean I'm happy with the way things are? And how will I then adjust again to another huge change, should Anabelle's needs change drastically, as can sometimes happen? I'm afraid to feel settled, to make too many plans, only to have something jump up and ruin everything.
I try to live small. I no longer have grand plans. I try to appreciate the little things that come every day instead of wishing and hoping for more. Because nothing is guaranteed to us, not even our lives, and the disappointment of "not" has far outweighed the joy that comes from "having" in my life when I have aimed too high. And I need to guard myself from negative emotions as much as possible because there are enough floating around my life already. So now the things I let myself look forward and enjoy are simple: a sunny day, dinner with friends, my daughter kissing her baby sister, crawling into my bed at night and having half an hour to myself with a book or a tv show. It has to be enough.
Things I have that those of you without special needs kids (and even some of you WITH) do not: 1) my baby never cries. EVER. She doesn't scream, she doesn't throw tantrums. If something is bothering her, she has a whine or a plaintive mew, but we might go a whole week without hearing either. There are certain babies that I know that shall remain nameless (but you know who you are!) that are destined to be horror movie scream queens. That is not in our future. I have never spent a night like I did countless ones with Elyse, pacing the floor for hours with a screaming baby, crying, "What is wrong with you??" over and over. 2) my baby will never have the terrible twos+ that I am currently suffering through with my older one. No tantrums, no backtalk, no attitude. 3) my baby will never argue about what I put on her or how I do her hair. She is my living, breathing baby doll to play with however I please. 4) my baby will never break my favorite lamp, crash my car, charge up my credit cards or stay out too late.
So many of my special needs friends want answers. Why did this happen? What is the prognosis? What will my child be able to do? How long will they be here? I get it. I really and truly do. That was me for the first few months. But one day I woke up and realized I didn't care anymore. What's the difference? Does knowing what happened with 100 or 1000 other kids change anything for Anabelle? Maybe if we were talking about a broken leg or a muscular disorder or a GI problem, but this is the brain. Anything can happen in the brain. I don't care how many other kids we may find with the exact same diagnosis as Anabelle, every one of their brains have formed in a different way, and the results are going to be different for everyone. I don't want a doctor to pigeonhole my child. The only one who decides what Anabelle is capable of is Anabelle. My job as her parent is the same as my job for my typical child: to provide her with every tool it is in my power to get to allow her to succeed to her fullest potential. I cannot ask any more of her, and I cannot ask any more of myself.
Working hard in therapy
So, as I write this paragraph, it is now Mother's Day, and in four days Anabelle will be one. One year ago today, I was anxiously anticipating her arrival, my biggest worry being how Elyse would adjust to the new addition, and how I would possibly manage two kids. Those worries quickly faded as I had a heck of a lot more to worry about Elyse dealing with, and the addition of a full-time nurse pretty much made the other worry moot. But I want to wrap this diatribe up and hopefully bring it back to the love letter I intended. All of you who have met Anabelle, and even those of you who only know her from a distance, know how incredibly special she is. I don't think I'm just saying this as her mother. There is something about her sweet face and gentle demeanor that just draws you in. The way she smiles when she hears you talking to her. The way she nuzzles into your shoulder when you hold her. The way she turns towards you when you kiss her cheek so that you end up kissing her mouth. The way her whole face lights up when she hears her sister, especially if she is singing or laughing. This tiny soul, my forever baby, brings a kind of light to everyone around her that I have never witnessed in another child. And while I would give anything, even my own life, if it would "fix" her, I have learned to selfishly enjoy the kind of person her condition has lead her to be.
So here we are after one year: terrified and apprehensive about what the future will bring, but so very thankful for every blessed day that this precious little soul is in my life
I had a lot of touching reactions to this message, and if I intend to document our life with Anabelle Rose, it seems only fitting to start there again. The first year is gone, I don't know that I intend to revisit it, but I think that if I know it is my plan to update here, I will remember to live more in the moment, so that I have anything interesting to share. To participate in my life, and also try to view it from an outside perspective. Thanks for putting up with me as I slog through the blog...hope it has anything redeeming for you all as well!