How to Take Flight

Lily patiently waiting yesterday to start her MRI

Yesterday Lily had a MRI.  I had explained that she was going to have this procedure done in an earlier post a few weeks ago.  Lily's genetics doctor wanted Lily to have one more MRI since her brain was now more mature.  The MRI would help the doctors see if she had any abnormalities, as well as, be able to better understand why Lily is so "unique" (the doc said it, not me).

Yes, Lily is unique.  By outward appearances, Lily is everything but unique.  She just looks like a normal kid.  However, inwardly, she is unique. Unique in the fact that we still wonder every day if this cloud will finally be lifted and that Lily will just get up and walk out the door.  Some days I feel as if she is "there."  She participates. She tries to make sounds. She follows my every move. She wants to play with my iPhone and look at photos. These little actions are normal; however, I am quickly reminded by the fact that Lily still doesn't sit up without assistance, she doesn't crawl, she still doesn't walk AND worst of all, she still doesn't talk.  I am not going to lie.  I cry.  I mean, I don't cry because of her, I mourn for her and what she may not accomplish compared to that of a normal, high-functioning child her age.  

As a parent of a special needs child, and with my own experience, I find myself mourning the losses that may never happen in Lily's life.  I mourn the loss of maybe never watching her make her first steps.  I mourn that I may never have a conversation with her and hear her funny little replies that most moms write about so easily on their blogs (I love reading them, so don't hold back).  I mourn that Lily may never be the brightest and most well-read child in her class (something that I was going to make sure would happen).  I mourn that she may never have the chance to be a leader at school or at church, or be able to try out for a sport, or even be a cheerleader. I mourn that she may never have a first date, or graduate from high school.  I mourn that she may never fill out a college application to any school she chooses in the nation. I mourn that she may never wear a wedding dress.  I mourn most of all that she may never have a family of her own.  For these reasons, if caught at the right moment, tears are inevitable for me.  I can't help but cry.  Luckily I am mature enough to know that I am just being selfish, because I am mourning for myself, not for Lily.  Yet still I mourn even though I know better—because I KNOW what is possible. 

Sometimes I feel like I am only "kind of parenting" because I haven't walked through the different benchmarks that a parent of a "normal" child might engage in with their little one. Don't misunderstand me, I know that in order to be good parents, we have to give our child lot's of love and patience. Believe me, Lily gets plenty of that at home.  However, I still don't know what it's like to teach my child the basics for getting by in life.  For instance, Lily still doesn't know how to hold a fork and feed herself.  She'll do it on occasion if I really focus in and force her hand to grasp it, but it just turns into what is already a hour long process into two.  By then, we are both covered in food and filled with frustration. 

I know that I am teaching Lily, but not the norm of what most parents go through with their children.  You see, I don't know what it's like to potty train a child.  I don't know what it's like to teach my child how to sound out different letters that will eventually form a word.  I haven't taught Lily how to tie her own shoe or get herself dressed.  I haven't even been able to put her in a "big girl" bed.  I don't even have to bribe Lily with candy or promises of Disneyland if she performs a particular task.  I am only half-parenting in a sense because what I do to parent is so different and... unique.  I know, I know, my "normal" is now a new normal, but still, I want to teach my child right alongside with the rest of the parents.  Right now, by circumstance, I don't relate.  Again, I know that am being selfish and I FULLY recognize who is at fault here. 

Getting her IV was like, "No big deal" to this
little one. This kid is tough!

So yesterday, as Lily was being wheeled off for her MRI, my mind quickly filled up with worry and anxiety.  I said a little prayer asking Heavenly Father that this procedure would ease my mind.  Give me answers.  It was time.  Then in the next breath, and something I am well-known to do, I changed my mind.  "No, Heavenly Father, don't let them find anything!  If they did, then that would mean I have even less of a chance of giving this child the best in me, the best in her! I want to give her normal!"  I really didn't know what I wanted.  Did I want answers? Did I want justification as to why Lily isn't doing what other kids her age are mastering?  Or did I not want them to find anything?  THAT would mean there is still HOPE! Hope that life could slope towards more normal, than not.  I wasn't making sense anymore.  

I paced.  I walked up and down the room in the recovery room waiting for my little one to be rolled in to recover.  I looked inside the recovery room's refrigerator and grabbed a Sprite. Something to keep my mind off what they were possibly finding in her little matured brain.  I sat back, put my feet up and tried to read a magazine about Ralph Lauren's latest home. Rubbish.  Who cares?  If given the chance, I would give away that silly house just to have Lily be like any other kid.  I was reading way too into what the outcome of this MRI might give Martin and me. Yet still, I didn't know if I wanted answers because that would pull us even further away from "everyday normal."  

Lily's wheelchair makes for a great ottoman.
Hmmm... what's in the fridge?

Finally, after 35 minutes of pacing, Lily was brought back into recovery.  I looked at the nurses and technician to see if their faces carried any signs of her prognosis.  They were stone-faced.  "Is that good or bad?" I said to myself.  After another 20 minutes the neurologist came in to talk with me.  Instead of him just saying, "Everything is normal," he parsed out each section of her brain to give me an update.   He said, "She has a small cyst in her right frontal lobe. Nothing to worry about though."  I felt relief.  Then he said, "She has small spots on the front lobe that is abnormal for a child her age, but still nothing to worry about."  I thought to myself, "Note to self: Look to see what causes these spots the minute you get home!"  He went on to tell me that her brain is progressing fabulously and that her brainwaves are normal.  Everything is normal, normal, normal."  I could feel myself melting in the chair I was sitting in.  I felt numb but I also felt relief.  I realized that I was much better off hearing that everything was normal as opposed to him finding something that would cause her to be so delayed.  My next thought was, "Now what? I guess you got the answer you prayed for, missy."  I thanked the doctor and Lily and I skipped out of the hospital. Rather, I skipped while carrying a half drowsy three-year-old.  I was happy and that was really all that mattered.

So, it's back to the drawing board.  Back to me wondering if Lily will ever have a chance at being like other little kids.  I'm back to wondering if I will ever get to potty train her or be able to teach her how to read.  I have decided that I am going to just start treating her as "normal."  I have some catching up to do.  I may never be able to teach Lily how to tie her shoe.  I may never be able to teach her how to sound out a vowel or how to swing in a swing.  What I AM going to do is teach this child everything I know.  I am going to continue reading to her.  I am going to continue teaching her about Jesus.  She will know the difference between "yes" and "no."  I am going to teach her that she CAN do anything.

Lily may have a few setbacks. Regardless, I am going to teach this child everything I think she is able to do.  This life is a test.  For me. For Lily. For all of us.  Lily's normal may always be different, but when I am done with her, she will be able to fly!