Harry's Illness {Part 1}

{One of my favorite baby pictures of Harry.  He was about 5 months old and had just learned to sit up.  He was in the process of laughing and falling when she shot this.  The Cafe au lait spot is visible there on his back.}

So I have alluded to some serious health issues with Harry. I have asked for your prayers (thank you for them). The other day, Harry gave me permission to share here what has been going on.  Last summer, he underwent a ton of testing for stomach issues/food allergies.  Ironically, a gastroenterologist noticed a large cafe au lait spot on Harry's back (you can see the spot in the photo above and another too).  He asked us if Harry has any more and I quickly said no. I really did not think he had any more. Doctors have always noticed that birth mark and always asked and I always thought that was the only one.

 But over the next few days, I noticed that he DID have a few more.  And I had this gut feeling that we should ask more about it. I swear the Holy Spirit would not let it go.  I just knew that I needed to ask the doctor why he asked about the spots. So, when Harry had some procedures with the gastroenterologist, I had Dave ask him about the spots (I did not want to seem like the crazy worried Mama).  The gastroenterologist said, "well as long as he doesn't have any in his armpit or groin, it is not a big deal."  I quickly said that Harry did not have any in those areas but Harry lifted his left arm and sure enough there were some in his left armpit. We had no clue. After Harry's procedure, the doctor came out and told Dave and I that we needed to see a neurologist to rule out a genetic disease called Neurofibromatosis 1.  We were stunned.  We were completely overwhelmed and terrified.

Neurofibromatosis is a genetic mutation.  In Harry's case it would have been a spontaneous mutation that occurred while I was pregnant since Dave and I do not have it.  There is no cure.  There is no treatment.  People with NF-1 typically get tumors called neurofibromas.  They develop on the nerves.  Some can be cancerous (10%).  They can be very painful.  They can be very disfiguring.  They cannot always be removed.  And if they are, they often return.  This disease can be mild or it can be really, really awful. Actress Gillian Anderson's brother, Aaron died from an NF tumor this summer.  He was 30 years old.  Children with NF1 are 200-500 times more likely to get leukemia.  There is no natural pre-determined course for this disease.  Every single case looks different.  There are a plethora of health issues that go along with this disease...too many to name.

When I found all of this out, my heart completely shattered.  The thought of my sweet, little freckly, funny Habu having this disease about did me in.  I was so sad for weeks.  I would look at him and wonder what his future would be.  I would look at him and wonder how many more pain free, tumor free days he would have as often puberty is when the tumors really develop.  I went through all the stages of grief.  And I prayed, a lot.

Then I realized that God already knew whether Harry had this disease.  No amount of worrying or crying would change that.  I suddenly felt more peaceful.  Let me say that I did wallow in doubt, fear and pity for a few good long weeks. I have never doubted that God has given Harry some really amazing gifts.  In fact, a woman sought me out at Mass last Sunday to tell me what incredible work Harry is doing on an anti-bullying committee at school.  She went on to tell me how articulate Harry is and what a good leader he is and how good his ideas are.  She looked right at Harry and told him he was special. This is the founder of an anti-bullying organization that met Harry at a meeting at his school.  Anyway, I am digressing but I KNOW that God has big plans for Harry. For a while though, I wondered if this disease would change him.  I worried it would defeat his spirit.  But now I know that whether Harry has this awful disease or not, God will still have big plans for him.  In fact, maybe this disease is part of the plan (although I really hope it is not).


To be continued....

I apologize for breaking this up into parts but it was emotionally exhausting to write it all and I need to do it in pieces.


Please pray for Miss Libbie.  She had surgery today.  I got to be there this morning before they took her back she was so cute and loopy from the meds.  That Libbie is a trooper. I am going back up to visit Shelly and Libbie for dinner tonight.  Love those girls!

Also, Cami is having surgery this Friday. I so wish I could be there to help them. They could use prayer as well.  It is going to be a long haul for them.


Finally, thank you for all the kind comments on my 5 year blog anniversary.  I loved reading every one.  And I plan to make the rounds visiting all of you who have blogs over the next few weeks.  I really appreciate you taking the time to say hello.