It’s working- Thoughts from Jack’s Mom

CNFWJ: IT’S WORKING

It’s Jack’s Mom here. I know, I know, the blog is Jake’s thing – and I’m so grateful for that (more on that later). But I can’t help but share something that hit me like a ton of bricks this past week.

Those that know Jake and I know that we are connected to and fighting for each and every individual who is affected by NF. Many of them we do not know. Some of then have touched our lives deeply and are connected to us forever. All are important.  All need their voices to be heard.  That said, when Jake and I began our journey as NF advocates – but always as parents first – above all we wanted to give Jack HOPE. We thought if nothing else comes of it, Jack could witness firsthand that there is so much good in the world, and so much support behind him, and that, because of this, he has the strength and the power to fight and to make a difference. That HE has NF – not the other way around. That he can find strength to cope beyond the chemo and the surgeries and the anxiety and the sadness and the worry.  If nothing else. Well, it’s working.

Jack is part of the NF registry. This is an incredibly important tool created by the Children’s Tumor Foundation (CTF) which collects anonymous information on individuals with NF so that, among other things, matches can be made for potential clinical trials, and also hopefully get the attention of big pharmaceutical companies to prompt more trials.  Both personally and collectively as part of the Georgia Chapter of CTF, I have been a big proponent of the Registry, and many in the NF community have heard me encourage, plead, beg and even harass those to join. It’s a natural and vital next step to a cure. Needing to “walk the walk,” Jack and I signed up for a recent opportunity about which we learned through the Registry to participate in a study about plexiform neurofibromas – specifically concerning treatment outcomes that are most important to patients.

It consisted of two 45-minute phone interviews; one with me and on with Jack. Suffice it to say that during my interview, I was asked and relayed Jack’s medical history and how it has impacted his life in every way – physically, mentally, socially, and emotionally. Then, last Thursday, Jack had his interview.

I set him up in our dining room so he could have some privacy – it is his experience after all, no one else’s (well, and yes, Luke and Grace can get pretty noisy). I could hear him talking quite a lot and for quite a while, but could not hear what he was saying.  Towards the end of the interview, I couldn’t resist. I had to see if I could hear any of the substance of the story he was telling.  I snuck into the living room, at which time I heard him say: 

                               I know this sounds funny, but in some ways I’m glad I have NF. If I didn’t, I wouldn’t do the fun things like fundraising or get to know all the people that support me.

Trying not to gasp or fall, I hung onto the banister a little tighter. I wasn’t going anywhere – I was hooked. I was all but screaming inside to Jake, who wasn’t even in town at the time: “It’s happening! It’s working!” Jack then described what a good time he had the previous weekend at CNFWJ’s DC Golf Committee swanky event hosted by Matt Benson and Carol O’Connell, where he was able to perform his magic act and dress in his “James Bond” tuxedo.

The next question was apparently about being treated differently by his peers, to which he responded:

    Yes, my friends do treat me different – but in a good way.  They know they cannot rough house as much with me because of my NF – because of my port – they know to go slower with me.

Words cannot describe the difference in Jack’s story today as opposed to a few years ago, when he would frequently come home with a story about a kid who pointed at his eye, or made fun of him, or when he would witness kids whispering. It really knocked him down. It started to hold him back from everyday interactions on the playground and elsewhere. But now, because of all that YOU have done, he can tell his story with confidence. I must in particular thank Brenda Miller – and all of the teachers who took her lead – for starting the movement at Jack’s school, with almost every student (an many staff) in the entire building now owning a CNFWJ shirt. Far from worrying about peers making fun of him, he now walks around the school like a celebrity. I’m just Jack’s Mom there (no better title).  But I digress…

Finally before the interview ended, the researcher must have asked if Jack had anything else to share.  This was a big one:

Yes, do you know about my video? It’s called “Jack’s Journey.” It has been seen all around the country.  Actually, people all over the world have seen it! You should watch it. It explains   a lot – it’s good!

Holding back tears and trying to tip toe out of the room before my strong, eloquent boy noticed, I savored the moment – especially in the face of knowing how fragile his experience is and how all can change in an instant. I thanked God, and thought of Duane Codrington – who singularly transformed the face of CureNFwithJack by coming to our house one day and asking us if he could (please!) document Jack’s story. It’s working.

It’s working because of all that YOU have done and will do. And it is so much more than giving Jack HOPE – it gives all of us affected by NF hope.  Thus, it goes without saying that my gratitude is actually an emotion – a feeling so big and indescribable that I will not try.  However, I know so much of my gratitude belongs to my husband. I write for a living – but my writing is immersed in facts and argument and advocacy (and other boring legal terms I will spare). Yes, I can write about the future of NF and the hopes and dreams of a cure that we have. But sharing our painful experiences? Well, I often don’t have the strength to relive them, which writing necessarily requires.  All of us know the power of Jake’s stories have in exploding NF awareness.  He does not write because he wants to. He does not write because it is easy.  He writes because he knows – because we all know – that it has and will make a tremendous difference, that it has and will transcend any other type of awareness campaign on behalf of those with NF – because it is hard and painful and necessary and fruitful and hopeful and inspiring.  After all, it has changed Jack from a boy who happens to have NF to a fighter who is recognized in parking lots, grocery stores and restaurants. For that, and for garnering the strength when I cannot, I am eternally grateful. Jake – it’s working.

Don’t forget!!!  Click on the word Golf to learn more about our tournament that will be sure to sell out on June 15th! 

Tomorrow there is HOPE and you are among the reasons why.  Don’t ever forget that fact. EVER

Jack’s Mom