Must Get Buff and Other Musings on Being a Mom to Ari

With life comes change. I need to keep reminding myself of this fact. In doing so, I am more willing to accept the changes not only in my environment and in my world, but within me. It’s the changes within me that are, at times, the hardest to face. Within the last two months or so, I have begun to feel myself thinking about Ariana’s disability differently than in the past. That’s not to say that I see her having Cerebral Palsy as being something worse or better than I did before. It’s just that the way I feel, the emotions that fill me when I think about her handicap are different than they were. And this is unsettling. In the past, whenever I thought of Ariana’s limitations, I was largely unaffected emotionally, but considered myself to be taking a more practical and productive outlook. I looked for solutions and I sought information. But really, I had two and then three babies and it was easy not to contemplate the differences between them, because there were few. They kept to the same schedules, they communicated frustration by crying and joy with laughter, they had largely the same interests and dislikes, and when we were out in public, most people could identify me as a mother of twins. Things like that are changing now… subtly but still changing. And more than I feel it on the outside, I feel it on the inside.

With the event of Ariana’s last seizure and ICU hospitalization, I felt a difference in me. I remember the details of the incident, sure. But they are hazy in comparison to my memory of the emotions that I felt at the time. With one in particular standing out among them: anger. In hindsight, I don’t really understand why I felt so angry, at that moment more than others. This hospital experience was certainly more positive than others. Ari wasn’t really any worse for having this experience (from a macro standpoint). But still, I felt infuriated and enraged. And my anger was directed at God, specifically. And it shook my faith in a way that I had yet to experience in my lifetime. This all happened so fast, and it was so disruptive, that I just hoped it would pass quickly.

I have been fortunate to feel the anger dissipate mostly. In it’s place, I have found myself preoccupied with strange thoughts of wishing and wanting more than you thought you could want for something… hoping against hope that Ari will be miraculously cured. No, not cured. Just well. That she will wake up one day and be well and whole and everything that she was meant to be. I think about her all the time – the Ariana that was taken away; the Ariana that died that day, and I miss her. I think about how she would dance, I imagine her swimming and running, and I wonder what toys she would choose if she could just rummage through the toy box unimpeded, and I ponder the adorable things she might say to me, and how it would sound to hear “I love you, Mommy” flow from her lips. And I know that this is something that nobody feels comfortable hearing, and so I don’t feel comfortable saying. But it’s true. I’m a daydreamer. I used to daydream as a child all the time; I got it from my father. Rarely do I have time to daydream now, but when an idle moment crosses my path, like in the car or on the treadmill or walking to Jake’s office, I hear my mind speaking. And what it says is, “What would I give for Ari to be healed? Well, I would certainly give (fill in the blank) if she could be well. Yes, I know I would live in poverty; with nothing and never complain. I would give my life. Gosh, I wonder if it’s possible…”. And when we’re driving in the car and the kids are watching Aladdin in the back seat, it sounds like “My first wish would be for Ari to be healed, wholly and completely. My second wish is for health for my whole family. My third wish is that we can always be happy.” Childish, no? And I think and think and think about it. I frequently think of time travel; of going back to that morning of her birth and getting that C-Section or doing that whole month of my life over. And I wish for it, and I think, what would it take? And I think, ‘Are you there God? It’s me, Elisa'.’ And when it’s apparent that God isn’t answering me today, I literally think I would give my soul up to any takers who would heal my girl. If you can’t relate to that, I hope you never do. Then I realized what I was doing. I was bargaining.

It wasn’t until recently that I, even with a background in Psychology, figured out what was going on with me. I was only now moving through the Stages of Grief, which I thought I had largely completed long ago. Some believe in the five stage model (Denial, Anger, Bargaining, Depression, Acceptance), and others think seven stages is more comprehensive (Shock, Denial, Anger, Bargaining, Depression, Testing, Acceptance). Either way, I am clearly smack dab in the middle, in the Bargaining stage; seeking in vain for a way out. I spent so much time in the Denial stage – I’m talking years – trying to avoid the inevitable that it really threw me for a loop when I started to feel something different. But here I stand.

Do I feel blessed? Of course. Is Ariana – this Ariana – a perfect angel and Joy incarnate? She is. Do I love my family more than the air I breathe? You can’t even imagine. Am I enjoying my life quite a bit right now? You can bet your sweet ass. But still, I have these moments. And they’re quick and they’re fleeting, but they come… often. And they’re a part of my life that I don’t choose to ignore, because I’m just not that type of girl.

On a different note, not having much to do with my emotional place but more the physical, I’ve been trying to get strong. I’ve been doing this for a while now, scheduling and respite providers permitting, but let’s just say I haven’t made huge gains. It is not because I’ve been lazy or because I’m not pushing myself hard enough. I really think it may not be in my cards to have pounds upon pounds of lean muscle mass on my body. But still I try. And when I’m at the gym about to give up before the end of my set or not wanting to set the weight higher, I just think, ‘Ari will gain at least a pound of weight before the end of the season (she currently weighs 35 lbs./16 kilos) – how will you compensate for that? If you have trouble lifting her now, at 26 years old, how will you manage when you’re 46 and she’s 23 and a full. grown. person.?’ I think about this a lot. And so I did what I thought most people would do when they have a health & wellness related question that doesn’t get answered in the day-to-day, I asked her doctor (her orthopedic surgeon at Children’s Rehabilitative Services, specifically). I love her Ortho, and he loves Ari. He’s a serious man, but he often interrupts himself, literally stopping midsentence, to exclaim Ari’s adorableness. It’s quite endearing. Nevertheless, when I asked him what other moms are doing when the children get bigger than the moms (assuming she doesn’t become ambulatory) and if I need to “just get buff”, his replies were off-the-wall. So crazy, in fact, that I hesitate to even repeat what he said! Through no fault of his own I’m sure, he proceeds to tell me my “options” which include hiring full-time assistance in-home when she gets too large to lift (not covered by insurance), put her in a long-term care facility (NO! NEVER!), or consider injections to cease maturation (NOT OVER MY DEAD BODY!). So there you have it: I must get buff (and healthy). And so must Jake. So forget about feeding us cookies or flashing me looks when I scold my husband for partaking in an excess of soda. Because we’re training so we can be at our peak performance at 60!