Grief

Recently I came across a blog that really opened my eyes. Don't you love that? It's such a rare thing to find. I don't have as much time as I used to when it comes to checking out other blogs, but every now and then a posting will catch my eye. This particular blog is written from the point of view of a young couple-- same ages as Bub the hub and I-- who lost their eight month old baby boy very suddenly last year. Their writing is so full of honesty, it's like a breath of fresh air. I mean, if you can even catch your breath from inhaling the overwhelming emotions of their journey. And rightly so, as there is absolutely nothing fair or right or "happening for a reason" when it comes to a child dying.

You might be thinking that I am connecting to the fact that I have an eight month old right now, but it's actually making me think more about her older sister. While obviously our stories are extremely different, I read their accounts of grief and see so many parallels.

I remember when the hub and I were told at the hospital that we were going to have to grieve for the child that we thought we were having. I hated that word so much. To me, grief meant that someone had died-- not survived a super dangerous brain surgery at one week old and then recovered like a champ! I felt like it constituted such a finality that I could not accept. We had no way of knowing what the future would bring, but whatever came, I was totally determined NOT to grieve. I wanted to celebrate the fact that Avery was still with us, not waste time focusing on what might have been. I feel so naive looking back at myself.

Grieving is quite obviously not something you can control. And we had no idea what it meant. How could we? We just felt lucky that she was alive. But slowly it all started to sink in...how hard this was going to be. The extreme struggle..the worry, the anxiety, the what if? The first year of Avery's life was one emotional rollercoaster after another. I don't remember exactly when I realized it, but my plan had failed. I was not only constantly grieving, but it had completely shattered me.  Denial(ha!), anger, bargaining, sadness....but they were not defined and there were no real stages because I felt them together and apart, forwards and backwards, intensely, all the time. And it did not stop after that first year. It continued and it continues. The rollercoaster is not quite as scary in a lot of ways, but it's still there. Up and down. So overwhelmed to the point of nauseous.

Reading this other blog really brings the pain of "what if" even more into focus. Because that sweet mommy and daddy can't help but wonder what might have been. What he'd be doing now. Who he would have been when he grew up. And it's the same for us. We can't help but dream about Avery running and playing with her friends. Enjoying a particular sport! Telling us all about her day at school. These totally normal, everyday things that we can't take for granted like everyone else.

My niece turned four the other day and the hubs and I wondered what to get her. What do four year olds like? We have a four year old, but we honestly don't know. Most of the time it's better not to focus on it. I know it would blow me away, how far removed we are. The hubs bought her the prettiest little ballet outfit. Would Avery have liked ballet? Or would she have been more outdoorsy? See, it's impossible not to do this. Impossible.

We accept and love Avery for exactly who she is, but the wondering never, ever goes away. It's haunting...and crushing...and sometimes, I think it will defeat me. I think, this could have all been different. Did we not deserve to have all the information when it came to the genetic possibilities of starting a family? It wasn't given to us. And the results were life changing. WORLD changing. It could have been different. It should have been different.

April was a hard month for Avery, and so, for all of us. To start, she had two separate throat infections. Both could have been diagnosed a million times faster, and saved a lot of pain and frustration if our sweet girl could simply say, "Mommy, my throat hurts." But she can't. It's such a simple thing that I know most of you don't even think twice about. Imagine your childhood and all the tummyaches, the sore throats, the boo boo's. Now try to imagine not being able to tell your parents what you are feeling. UN-imaginable, right? Now imagine being the parents and ALL you want is for your children to be happy, to feel safe, and not hurt. But you never know exactly what is ailing her...she is crying and miserable and all you can do is guess. Actually, don't try to imagine. It's mind numbing.

April was also the seventh month in a row that Avery went without Botox, which she desperately needs to help relax the tight, tense muscles on the right side of her body. She needs the injections every 3 to 4 months, but her doctor at Texas Children's is so maddingly busy that she can not find (or squeeze) an extra hour into her schedule so that my child can have a little relief. No matter how much I begged. And so Avery spent most of her therapy sessions in pain, her walking suffered, and she was overwhelmingly cranky about it. Well, I would be too.

At the end of April, we had a major highlight. We were given the ok from Avery's neurologist to come off her last medication--one that we had been on for three and half years. It was so exciting!! Bub the hub and I had been told for a very long time not to expect her EVER to come off all medications. It was a welcome surprise. So, after weaning off slowly for six weeks, she was totally and completely med free for the first time in her entire life on April 23rd. We had exactly two days of celebrating. On the third day, Avery was a complete mess and as usual, we had no idea why. All of the sudden she had an extreme hearing sensitivity that meant every semi-loud sound (so every time Madeline opened her mouth), Avery had a meltdown.  I don't even have the words to explain how frustrating this was. I can say that I had some parenting moments that I am not very proud of.

For the rest of the week, we tried to figure out what was going on. Was it coming off the medicine? An ear infection? (the doctor said no) Was it just a neuro thing? How much do you love this guessing game we get to play? Meanwhile, Avery was miserable. I couldn't take her to school and I couldn't figure out how to make her happy. By the weekend, it seemed like she was feeling better. A week later I stumbled on an explanation randomly...coming off a med like that after so long had caused her total sensory overload. She was overwhelmed by this new world-- not dulled by the medicine anymore. We thought the six week wean would take care of that but we were wrong. And nobody warned us this could likely happen. Seems to be a theme, right?

May has been better. Thank the lord, 'cause I was headed straight for the loony bin. Sounds like a joke, but sometimes I really wonder how I haven't gone completely mad. There should be a grief stage called looney tunes I think. The stage where your mind comes to the point where it absolutely can. not. take. one. more. thing. And I wonder what alternative universe am I living? Because this one can't be right. Maybe that's just a part of denial though? Who knows.

That "last" stage of grief is acceptance. Another word I hate. I am so not there. I don't want to be there, I tell myself. It just sounds so.....final. As much as this has worn me down, as much as I have pulled my hair out, again and again... been paralyzed thinking about her future-- I am still fighting for her. WE are still fighting for her. 

I know that no matter how much I try to explain this fight, most of you will never understand what the heck I am talking about. That's sort of a good thing though, if you think about it. I am actually thankful that you reading this blog have no idea how hard this is. You are lucky.

A couple of years ago I was watching a rerun of ER, one of my favorite shows of all time. A couple on the show had recently had a miscarriage. The grieving woman's mother tells her partner, "Life is joy and grief, hand in hand. You can't know true happiness until you've had true sorrow to contrast it. She hasn't learned that yet."  I've never forgotten that scene. It made me sob. But it rings true, and I hope for our sake that it is.