Tonight I have been thinking of the day we found out about Isabella's Lissencephaly. I think of that day quite often actually, and I'm not really sure if that's "ok" or not "ok". It's just an infamous day in my personal history, so I go there often, even though it is incredibly painful to do so. Perhaps I am hoping that by re-visiting it often, the pain will subside eventually? Who knows?
Anyways, the beginning. I woke up in the middle of the night (around 5am) for no apparent reason. Isabella was asleep in the co-sleeper beside my bed and something just didn't feel right to me. I looked over at Isabella to check on her and her eyes were wide open and looking upwards. She was also arched back and jerking in a rhythm. I immediately snatched her up, yelled at husband to "wake up!" and we rushed her into the kitchen. (later we would question why we did that and didn't just turn on the bedroom light.....it's amazing what you do when you are in a panic!) By the time we arrived in the kitchen she had stopped doing whatever it was that she had been doing and we just stared at her for a few moments questioning each other as to what that was. I'll be honest, right at that moment, I knew exactly what it was.....I was just not prepared to admit it to myself or my husband. It was a seizure. A plain as day seizure. As luck would have it, I worked in the ER as a secretary and knew all of the doctors there, so I called them up, knowing they would not diagnose her over the phone and that if I wanted answers I would have to bring her in. The question was, did I really want an answer to this? So we waited. We checked her temperature (I was so hoping for a high temperature to give reason for this seizure, but alas, her temp. was fine). We fed her. She went to sleep briefly and then suddenly woke up and had another seizure right there in husband's arms while we watched. My mind was reeling. "What the HELL is going ON????" So I decided to take her to the ER. Turkey was still asleep (it was almost 7 am at this point) and I convinced husband to stay with him; I didn't want to be that parent who drags their children out of bed to the ER.
So off Isabella and I went. I drove so fast to that ER the whole time saying to her "Don't worry sweet girl, everything is fine".......I don't know who I was trying to convince, her or myself. I started immediately to rationalize the seizures, "perhaps it's epilepsy?", "maybe her neurological system is just immature and it's working things out"......I mean, really, does that even make sense?
We arrived and everyone kind of started kidding me about being a paranoid mom, which I was so beyond grateful for. It kind of gave me the sense that things were really going to be alright and maybe I was just being neurotic! The doctor decided to just give her a Cat Scan and see how things looked before drawing blood or anything invasive. Of course, I couldn't have agreed more with that game plan! Especially since I was totally unaware that the Cat Scan would deliver the largest blow I had ever received.
I'll never forget the moment my life was changed forever. I kept waiting for the doc to come in and give me Isabella's results. I knew it was taking a really long time and I was getting irritated. I should tell you that my mom was an RN in this ER at the time and I had been trying to get a hold of her to tell her the situation so she could come be with me. When I saw my mom I was a bit puzzled, like "who called her?" and then I saw her go out of my line of vision with the doctor. That was when the first feeling of fear set in for me. Then it happened. So fast, it was like a freight train hit me head on and I couldn't move....I just watched it come at me and waited. The doctor walked in with my mom, who was already crying and he shut the doors. I immediately started crying and said "what is the matter with my baby!? Tell me right now!!" He walked over to me, sat down in front of me, touched my leg and said "Isabella has something called Lissencephaly" (which of course meant nothing to me), he went on, "her brain did not finish developing in the womb and it never will. She will be severely developmentally delayed". Now those are words I understood perfectly. No explanation needed, thanks. I vaguely remember screaming out "NO" or something and crying like I have never cried in my life. I just clutched Isabella to me screaming and crying. I remember thinking that he must be telling me lies, that he had something to gain by saying these awful things to me. This simply could not happen to me or my daughter. I'm young! I'm healthy! I follow all the rules when pregnant! What is Lissencephaly! I think they just made that up! That one moment, that seizure, changed everything for me and my family. I was beyond devastated and I won't even go into how horribly devastated my husband was when he got there and received the same blow. It still devastates me I suppose. It haunts me and sometimes I still can't believe this is my life, that I have had a child, loved a child and lost a child. I don't think any of us picture life unfolding in this way, I know I never did. I would get married to the man of my dreams, we would have 4 kids, a nice house and ride off into the sunset. Funny, life never really works out that way does it? The point is, do you lay down and take it, or do you fight back with everything in you?
In the beginning, I fought back. I went home that day from the ER (which was long, terrible day of EEG's, IV's, seizures and more) and immediately began researching Lissencephaly and brain development. I immersed myself in it. I became a pro, very quickly. I got Isabella in to see the world expert in Chicago by the time she was 12 weeks old, even though he had a 9 month waiting list. (He later told me I was the most aggressive parent he had met, and he meant it in a good way.) I researched and read until I couldn't see straight. I learned more than her neurologist would ever know about the disorder and then some. That was the first month. The beginning.
The second month post diagnosis was not so valiant. I cried every.single.day that month. I couldn't get out of bed sometimes. I wanted to quit. I'll even admit, I wanted to die. The pain was so intense I almost could not bare it. I ached so badly for Isabella. I wanted to fix her, I wanted to find a miracle cure for her. I wanted to give her my brain, to give her a better life to take away her seizures. I could not do those things and that was so painful and hard to accept.
I am at the end of the second month post-losing Isabella and let me tell you, it's just like that first second month. Hell, pure and simple. Way worse than the first month. I have cried so hard I vomited.........I have found myself staring at nothing for who knows how long. I don't want to cook (something I use to do with pleasure), I don't want to clean, I don't want to fix my hair. I just want to curl up and die. Now of course, I fight these things. I make myself clean, cook and fix my hair *most* days. Oh, and obviously I take care of and love Turkey. I try to hide this side of me from him and fake a smile for him whenever possible. I'm a fighter by nature and refuse to let life beat me down. Boy, life is a tough fighter though, a fierce competitor.
I'm looking forward to month three now though, it's when I got renewed strength after Isabella's diagnosis and I am hoping for the same thing this time around. I do have a lot of other things to live for and I do know that I will be happy again, it will just take time. I want Isabella to be proud of me and proud of how I live my life without her. I know she does not want me to "curl up and die", she wants me to live, so she can live through me here. And that is just what I intend to do. :)