What a difference a weekend makes

On July 9, 2015, Jay, Madison, Nathan, my Mom and I traveled to Chicago, IL for the Annual Batten Conference. I have to admit, I was a bundle of nerves.  I had run through every scenario in my head. It started with arriving at the airport.  How would check in go, how about the flight?  Nathan can have a hard time on long flights and I don’t like to disturb anyone. How far would the drive be to the hotel?  We were traveling early and the first event was that night.  Would he last the day without having a meltdown?  As you can see that is a lot of worry just to get us to our destination.  Then I had the additional stress of the conference.  I had NO idea what to expect.  I was thrown into this world on June 10th and had no idea the family that would be waiting for us.

We had been corresponding with several families via Facebook on a Batten page for families and we were eager to put faces to names.  But I would be lying if I said I wasn’t scared to death.  It is really hard for me to go into new situations . Especially situations where I don’t know what to expect.  I remember being nervous walking in and the very first thing we did was go to a newly diagnosed family meeting. That is where all the families who have been diagnosed over the last year would meet their host family and have a chance to ask questions or just take a deep breath.  I remember being very overwhelmed in that moment.  We then went on to a cocktail party where we just got to visit with all the other families.  I finally got to put so many faces to so many of the children’s pages that I follow.  That is the night Nathan met his new buddy Joey.  It was like looking at a mini version of Nathan.  Joey is so similar to Nathan is so many ways.  For the first time ever I felt this amazing feeling like there is another kiddo who is like Nathan.  Nathan has always been so unique.  It was like no one ever understood him but in 3 minutes of their meeting, Nathan and Joey were buddies. To follow Joey, please go to Joey’s Journey – Juvenile Batten Disease page on Facebook, he is an amazing little boy with a phenomenal Mom!

The next morning started with Jarrett Payton speaking.  We arrived a few minutes late and were not quite sure who he was.  I kept asking Jay, “who is that?”.  All he could say is, “I think it must be an athlete of some sort.”  He kept talking and there were stories of Michael Jordan being at his house and going to basketball games and seeing Scotty Pippen.  Even I, who doesn’t know much about sports, knew those names.  But I still couldn’t figure out who he was.  He gave a wonderful speech and near the end made a comment about his Dad being called “Sweetness”, Jay leaned over and said that is Walter Payton’s son! Ok, even that one I knew:)  He finished his speech and a few minutes later left.  I have no idea what came over me but I became very emotional.  I needed a minute to myself.  I left the conference room and was walking towards the door in the lobby and I could see Jarret walking back in.  As he got closer to me, he grabbed my arm and said “Are you ok?’  I immediately started sobbing and told him that no, I was not ok.  I proceeded to tell him that our son was just diagnosed on June 10th and was feeling very overwhelmed and needed a minute to breathe.  He told me at he was in his car and ready to go home but something was telling him to come back in and that I was the reason he needed to come back.  He gave me a huge hug and comforted me.  It was a very odd encounter.  I had not cried up until that point except for at the Doctors office in June.  And here I was crying to a complete stranger.  He told me a really nice story about is Dad and we had a nice conversation until I could compose myself a little better.

We spent the next three days in jam packed sessions.  We met with Scientists, Doctors, Researchers, affected families and extended members of those families.  In fact there was one scientist who was there that 24 hours prior had been running with the bulls. He jumped on the plane to be at this conference. There were over 400 people in attendance at this years conference.  It was the biggest turn out yet.  We had mini sessions that we would go to.  We learned about how to better navigate an IEP, how to communicate our needs to our spouse, how to speak with Doctors and get them in touch with the experts in the field, what new doctors might be good to add in to our mix.  There was one session on caring for the caregivers.  It taught us that it is ok to ask for help, which is something that Jay and I both struggle with but are trying really hard to get better at.  One night Jay and I stayed up until 2 in the morning talking to a couple other Dad’s and that night I could have been an expert on seizures.

It is amazing what all these families have gone through.  All of these children are so different, but yet we have all traveled such similar journey’s.  Some like us it has taken years to get the proper diagnosis.  Trying different medications to try to curb an undesirable behavior when in reality, that was never the issue. I think about all the things that we have put Nathan through that maybe we didn’t need to if we had known.

I believe that Nathan has always tried so hard to fit into a box that didn’t quite fit him.  Yes, he has had friends at school and he is happy, but I have never seen him as happy as he was during those three days.  He fit, he belonged and people just got him.  He discovered that he was quite charming with the ladies and there were several marriage proposals and kisses on the checks or hands.  And he even discovered all the gentleman’s beards and was not afraid to ask to feel them.  Everyone obliged and were very gracious about it. There was not single person there that didn’t understand when Nathan was having a problem.  It was normal behavior and I cannot tell you how good it felt to be surrounded by understanding.  I said it many times that weekend that I didn’t want to leave the bubble.

There were groups for the siblings as well.  Madison had lots of kids to hang out with that finally knew EXACTLY how she felt.  They did day trips and went to the Aquarium and to dinner at Medieval Times for dinner.  There were lots of activities she could have participated in if she chose to, but she was uncomfortable.  We were reassured many times by the older siblings that this is very normal behavior.  It is very understandable for her to be completely overwhelmed by what she was seeing.  It may take several conferences for her to feel comfortable with her surroundings. We just want her to be assured that the support is there for her.  We know how hard this is for her.

Looking back I wish walking into the conference I could have known that I was going to feel like I found a second family and maybe taken a little more time to relax and enjoy it and take a deep breath.  Next year for sure.

Stacey

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Facebook site

I am not the most technologically savvy person, so I am not sure how my WordPress site is linked to my Facebook site.  I wanted to let everyone who may not know that I have a Facebook page what it is.  You can find it at Https://Facebook.com/sothathecansee

Sometimes, I update information there more frequently, so I just wanted to make sure everyone knew this information.

Thank you,

Stacey

Update on Nathan

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I know I am not the most eloquent writer, but I write this with an honest and heavy heart.  The last few weeks have been hard on us to say the least.  We are emotionally and physically drained.  We have received what seems like blow after blow and I would be lying if I said I was not ready for some good news.  

We took Nathan in for his MRI and EEG on March 4.  He went under general anesthesia and had the MRI.  He was and is always so brave at doctors’ offices and hospitals.  He came out of the anesthesia very agitated.  They had an IV in his hand and he was not happy about it.  The nurses could not seem to get an accurate answer if he would need it at the EEG unit and they did not want to take it out in case they had to put it back in.  After the recovery room, the wheeled him up to the Epilepsy Monitoring Unit and were able to remove the IV.  He was much calmer after that came out.  We then spent about an hour and a half with them hooking up all the electrodes to his head.  He lay on the bed so patiently while the technician used a sharpie to mark his head and glue that stunk and then finally wrapped his head with gauze.  He had to carry around a pouch with the monitor if he got off the bed.  He was very pleasant the whole time we were there.  I had been nervous that keeping him in a room for 24 hours would be more difficult, but once again, he just amazed me.  I would love to say that the sleeping arrangements for Jay and me were ideal, but let’s just say, I got to snuggle with Jay’s feet that nightJ

The next morning the Doctors came in and told us that his EEG was normal!  There were no signs of the min seizures that they were looking for.  They did say that his brain slowed down at night, which is indicative of all the things that are going on with him.  We really don’t know what that means, but do have another big appointment coming up that we will have a chance to talk in depth more about all of this.

On Friday, March 7th I received a voicemail from Nathan’s Neurologist that went over the results of his MRI.  I was glad that he left a voicemail since there was no way I could have ever repeated the information to Jay.  It made it easy for Jay to listen to it himself.  His comment was that Nathan had “Progressive diffuse cerebral and cerebellar volume loss since 4/2012”  They compared this MRI to the one they did in 2012 and have determined that there is volume loss to his brain.  Basically he has lost brain matter.  He said clinically, it is what was expected, but still they do not have a reason as to why.

Next up, was our Ophthalmology appointment on March 13.  That was terrible news.  We were told that his eyes were significantly worse since November, 2013.  He said that he is basically almost completely blind and considers him “light perception” only. All of this information together just got to be too much to hear.  We are completely devastated by the fact that 5 years ago, we had a healthy little boy who we never would have imagined this would happen.  I don’t know why this is happening.  Jay and I unfortunately are in the place where we are racking our brains trying to figure out what we may have done to cause all of this.  I know in my heart that we did not do anything, but as a parent, I can’t help but feel responsible.

On April 1st, we will meet with the Neurologist and the Mitochondrial DNA department heads to hopefully get the results of the DNA they took back in November.  It was sent to Harvard for analysis.  The tests that they are looking for are life threatening/ life shortening illnesses.  The fact of the matter is

that we have to somehow gear ourselves up to hear potentially bad news and for the life of me, I don’t know how to do that.  

Something is going on with Nathan.  He is regressing in a way that no one understands.  It is always so frustrating when you take him to the best of the best Doctors and they just don’t know.  The truth is that on April 1st those tests may not reveal anything and we would have to go to a 3rd round of DNA testing, which would mean another 4-6 month waiting period.  We need answers so that we can help Nathan.  

I would desperately like to ask all of you to please say a prayer for Nathan as well as our whole family.  This affects Madison, Jay and me in a way that I can’t describe.  

Thank you,

Stacey