Thursday, July 25, 2013

My fears

Let me start by saying, Logan is going to be fine. His life is not over. The reality is, he is probably just as likely to die in a freak accident as he is from these tumors. I hate even bringing up death, but lets face it, as a parent, I think about it. The good news is, I do not fear him dying.

My fears are different, but certainly no less real. Before we even found out that Logan had NF, my brain was getting the best of me.  I worried that his test results would indicate that he did in fact have NF and I cried. I did not think the worst was going to happen. I did not anticipate tumors and going blind, seizures or strokes. The doctors told us to be careful researching on the internet, because it generally only shows the "worst case scenarios". You search for NF-1 and you get pictures of people with tumors covering their bodies and stories of people whose lives are completely destroyed  because they have NF. This is not reality to everyone with NF. I didn't go to the worst case scenario. I tried to be realistic about it.
If he did in fact have NF, he was probably in for the the standard learning disability, ADHD and some tumors on the skin. I cried. I work with kids that range from the mildest learning disability to the most profound intellectual disability. I know the struggles that they go through to learn and be successful. As a kid, I was classified learning disabled and I struggled. I don't want my son to have these same struggles. I don't want my son to work twice as hard as his classmates to do the same work. I don't want him to cry over his homework because he just doesn't get it and it feels so unfair.

I know it sounds superficial, but I also didn't want my son to look different.  I fear him having tumors all over his body. He already has a few developing "bumps" and I pray that that is the worst of it. Kids are mean.  I fear that he will be picked on and bullied if he has tumors on his face.  I fear the looks he will get and the whispering he will hear when people just don't understand.

Now that we are 2 years into his diagnosis, and his symptoms are developing, my fears develop right along with them.  It is no longer a simple case of learning disability and physical appearance.  The thing that I have come to fear the most about NF, is that we just don't know what is going to happen. NF is so unpredictable, the doctors can't tell us what is going to happen to Logan.  They don't know if he will go blind.  They don't know if he will lose the ability to walk.    They don't know if he will require a shunt.  They won't know what dangers Logan faces until he is actually facing them.  From the beginning we have been told that NF rarely causes these kinds of problems.  That the worst case scenarios were rare. Two years ago, we were told that we had a 10% chance that Logan would ever need to go through treatment. Yet here we are.  And still, we don't know if the treatment is going to work. I fear not knowing.

Tomorrow, Logan goes in for surgery to have his port put in.  This is a fairly simple procedure and I know Logan will do just fine.  He's been under sedation more times than I have and the procedure itself is hardly intimidating.  Yet, I am still scared.  Not for the surgery.  I fear that this is the beginning of a difficult time.  Logan will be beginning a year of weekly injections with medicine that will likely make him sick.  While we don't know how his body will handle it, the doctors have prepared us for worst.  Trips to the ER at the first sign of fever.  Nausea, fatigue, nerve damage.  I fear that Logan will be in pain and we don't even know if it is going to work.  I fear whether or not we have made the right decision.  I fear the mental, emotional, physical and financial strain that this year will put on us all.  I fear how his brother is going to handle these changes.  I try to not let it show, and if you talk to me, I probably say, "I'm fine", but the reality is I'm not. 

I am trying to stay positive and the best way I have found to do that is to just look at Logan.  He is happy.  He doesn't know he is "sick".  He LOVES going to the doctor.  He begs me to go to the doctor and gets sad when I tell him it's not time.  While most kids his age go to the doctor for one annual well-check, Logan averages once a month.  At times, he's had 4 appointments in 1 week.  And he LOVES it! He sings about it and tells everyone he can with excitement when he gets to go.  I hope he doesn't lose that excitement and he can continue to make me stronger. 


  1. Praying for you guys! I hope he can keep the excitement as well.

  2. Hang in there! Let us know if there is anything we can do, or even take Parker off your hands for a bit.