Not Sure How To Feel….

Over the last two years, my life has taken a drastic turn.  I wouldn’t say for worse, but I can’t really say it is for the best either.

In November of last year, my husband found a new job in Georgia.  Which would mean leaving what was my real home and friends in Virginia.  I was conflicted, scared, and sad to be leaving.  I had run my own pet sitting business for over 10 years and I was going to have to leave it.

As we were preparing our house for market, I started to feel sad, moody, tired, and little sick.  YEP!!!  I found out in January that I was one month pregnant!  The day before my husband left for Georgia to start his new job, I took a pregnancy test (well, actually three tests).  I didn’t believe the first two.

Because we couldn’t afford to move until our house sold in Virginia, I had to stay behind.  Lucky for my husband, we weren’t living in the same state for 8 months.  He didn’t experience the joys of having a pregnant wife, except for the cell phone calls that mysteriously always had a bad connection.

What a whirlwind that year was for me.  I was alone, closing a business that I had built to over 200 customers, planning a move out of state, and now pregnant.  All of this seems like a distant memory now……

After my Lily was born, the changes just kept on coming.  I had to redefine myself as a mom.  Challenge myself to find a career choice that was a better fit for my new life.  Make Georgia my home.  Stay in touch with my friends in Virginia and find new a new support network.

Just as I thought I was adjusting pretty well, BOOM!!!!  Everything came crashing down.  I am not even sure where to start in explaining.  Lily was about a month old, when I noticed something on the internet about infantile spasms.  These spasms looked very similar to something Lily had been doing since birth.  Everyone who saw her doing this spasm would ask me what she was doing.  Being a naive and new mom, I didn’t know.  They concerned me, but when I called the Pediatrician her response was that she didn’t think they were spasms.

I was a little relieved, but still worried.  So, I video taped her.  The Pediatrician saw the video and couldn’t determine much.  She wanted to see about getting an MRI in few months.  My husband and I couldn’t wait, we immediately went to the Children’s Hospital.  Downhill it went……..

Spinal tap, CAT scan, MRI, multiple blood tests, EEG…..  you name it.  It is all a blur!  I can remember spending a week on the worst roller coaster ride of my life.  One doctor would come in to declare a possible diagnosis with very dire consequences – an hour later different doctor with a totally different diagnosis and prognosis.  I never knew what to think, my gut was screaming that something was VERY wrong with my beautiful daughter.

Now I was lost!  No support of my friends, in an unfamiliar state, scared out of my mind for my daughter, and new responsibilities as a mom.  No one close to me has suffered from a serious illness, I had no prior experience (if you can call it that) at handling such situations.  I am not sure anyone is ever prepared for something like this.

At the end of a week, they didn’t have any answers.  They were able to tell me that she didn’t have any infections, but they wanted to treat her for seizures.  Thankfully they were not infantile spasms, just seizures.  Funny how that “just seizures” is actually being said with a sense of relief.  I never would have been relieved by that diagnosis, if I hadn’t actually stared at the abyss that was threatening to take my daughter with the previous diagnosis.

OK, now I was ready to settle in to the routine of phenobarbital, monitoring seizure activity, and routine visits to the neurologist.  Her seizures changed and were happening more frequently.  The Neurologist wanted to monitor her overnight, so they could get a good picture of what was going on.  Blindly thinking that this was going to be an easy test, we would get our official diagnosis of epilepsy, and we could chart our course for action.

Fate wasn’t done with me yet!!!!  I went in alone, not the least bit worried.  My husband went on to work and planned to meet up with us later in the day.  I am calmly knitting away, when a tornado comes into the room.  This new Neurologist was a specialist for neurological conditions and he had just reviewed our charts.  He asked me one question and I immediately knew my storm was brewing.  As fast as her whirled into the room, he was back out.  No explanations, just “I think she has Tuberous Sclerosis.”  Whoosh and he was gone.

I don’t think I took another breath for several minutes.  I ran to my only source of information, my tiny little cell phone screen, to search for this condition.  Over and over I saw mortality rates, serious disabilities, seizures…..  And just like that, I was changed forever.  Fear, grief, confusion, depression, and all other types of feelings swept me away.

At the time the only thing the Neurologist could tell us with any certainty, “I don’t know what her future holds.”  Possibilities ranged from major developmental delays (no ability to walk, talk, or take care of herself), emotional disabilities (depression, hyperactivity, lethargic), and even tumor growth.  Currently she has tumors on her brain, these have to monitored for changes most of her life.  Tumors are a symptom of this condition, depending on where they grow determines her future.

Presently, things have been going pretty well for almost two years.  We are thankful everyday for her.  She has shown me so much about life and myself.  The strength, determination, and joy in her face gives me the same.  Our two year milestone is coming up in July.  An MRI, ultrasound, EKG, and EEG are scheduled to determine any changes or new symptoms.  I am scared to death, because I am afraid the mouth of that abyss is waiting for me again.

I raged against that abyss several times over this last two years, I am ready to rage again.  I just hope that it will start to subside at some point.  Having previously suffered from depression and self pity, that all seems pretty insignificant now.  I can remember having those days where I wallowed in self pity, not thinking I had the strength to get out.  Now faced with the most difficult of situations – I found strength, deep unconditional love, happiness, determination, patience, and flexibility to find answers.   I am a better person, because of this struggle.

Am I wrong in not being sad or focusing on the sadness?  I feel guilty for not being sad sometimes.  I also feel guilty for worrying about my daughter’s condition when I see others who are suffering so much more.  We were lucky and I am thankful.  I have bad days just like everyone.  Some days, I still suffer from self pity.  The biggest change is that I know I have to claw my way out – Lily needs me to be strong for her.  I don’t want her to see any of the pain and struggle.  My job is to protect, guide, nurture, and help her.

One day, as I was talking to my mother in law about Lily, she started to tear up.  I stared at her a little confused and a little angry.  I don’t get the luxury of crying – I am so afraid that if I started to cry, I would never stop!  Focusing on the goal – taking each day one step at a time.  Handling things as they come up, not predicting an uncertain future.  I hear that crying is a release – not too sure I agree.  I get a release from a hard run or a long ride on my horse.  My soul needs healing, not sadness.  Is that wrong?  Should I be so incredulous about others sadness?  Sitting around focusing on what isn’t going to happen for Lily doesn’t help anyone.  I focus on what she is able to accomplish and who she is.  Finding ways to help her with the struggles are what release my sadness.  Answers, or planning a course of action are time better spent.  Am I wrong?


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