Archive | December, 2011

Setting a sacred intention

31 Dec

This month I have worked on setting a sacred intention to mark the transitions in my day. Our house has been filled with a tremendous amount of activity and emotion. With family and friends coming and going and so much to do as we wrestle with the practical aspects of life it is very easy to simply float from one moment to the next.

My favorite example of setting a sacred intention is with our son Jack. There are so many moments in every day where I interact with Jack with a purpose in mind: get dressed, eat what was served, put away toys, make it to the potty in time, and go to sleep without a fuss. Those are all valid goals and I think that when they are met it reveals an underlying calmness and attention that is ultimately part of how we love Jack. They are not, however, sacred intentions. I never realized that until we visited with Paula Rauch. Dr. Rauch is the founder and director of P.A.C.T. (Parenting At a Challenging Time) at Massachusetts General Hospital and she offered us valuable guidance on helping shape the narrative that Jack is already creating as he makes sense of the changes in his world since his mom began this journey. The prominent theme to the narrative she wanted us to write for Jack was that he was loved and he was safe. How beautiful and how simple, but how easily forgotten. It occurred to me that this was not only how we want Jack to feel when we are talking about Kim’s experience with ALS but in every interaction. When I get Jack dressed in the morning and he wants the t-shirt instead of the sweater I don’t just want him to do what I say – I want him to know that when he goes outside the cold air will hurt his skin in the winter if he doesn’t wear warm clothes and that I am doing this to keep him safe because I love him. I found an example like that for everything we do together and even though I don’t always say it out loud to him it colors our entire relationship now. My sacred intention with Jack is not just to keep him safe and love him, but to help him know that he is safe and loved.

Of course I also want to embrace a sacred intention for each moment I spend with Kim and the busier our lives become the more important it is. There are so many things to do now, where before there was empty space. I thought I was busy leading up to the changes in our lives, but now I realize how much time I had that was my own and with so many daily tasks to accomplish that range from preparing food to processing insurance claims (and all the normal aspects of life in between) it is easy to get lost in a life of nothing more than checking items off a to do list. There are loving, sacred intentions to be discovered in even the most mundane action. I do not make the bed, set up the pillows, clean the bedroom because they should be done – I do them because I intend to create a peaceful and healthy environment for Kim and I to rest. When Kim needs help picking something up I don’t just want her to have the thing she is asking for – it is my intention that I find a way to help her that preserves her independence and dignity while helping her feel safe and loved. Taking the time to pause, reflect and set that intention breathes a spiritual life into our days that is needed now more than ever – but was always needed.

Our trip up North

20 Dec

It has been a whirlwind of activity for us as we visited family and put together our new medical/healing team. For this post I will just share an update on what we learned so far and what we have been doing so those close to us can stay up to date and anyone who might be in a similar situation can learn from the path we took to get here.

It became clear that our hometown neurologist and primary care physician had very little experience with ALS and the team at Mayo, while technically very skilled, had minimal insight into treatment options. So during our travels up north we scheduled a clinic visit with a world renowned ALS team in Boston and came away with a much better understanding of what we are facing and some  options that have shown in clinical trials to slow the progression of ALS. We were also coached on physical and speech therapy options, adaptive technologies and how to talk with our 2 year old son about the changes in Mommy and all the emotions of friends and family.

Probably the biggest challenge we are facing during the holidays is balancing all of the medical appointments, administrative tasks associate with managing ALS (i.e., insurance, taxes, finances, scheduling, and having meetings to share information and make decisions), time with family, healing, rest and carving out space to nurture our relationship so that ALS does not dominate who we are as a couple. Kim has to manage her energy carefully so we are paying particularly close attention to the length of activities and visits, but trying to enjoy both as much as we can when they happen.

Our first visit with the neurologist in Boston confirmed the diagnosis but also added some nuance to the term ALS. We learned that ALS is actually more of an umbrella term that captures many different types of neuromuscular disorders that all basically act the same but may have different triggers – and ultimately may have different treatments. There are several promising clinical trials that recently ended that showed the ability to extend and improve the quality of life for ALS patients.  The most promising drug options include Creatine, Tamoxifen, Ceftriaxone, Dexpramipexole, and NP001.

We were also invited to work with a speech augmentation clinic at Children’s Hospital in Boston that provided us with a special digital recorder so Kim can record phrases and messages. This process will allow Kim to store high quality digital recordings so that they can be accessed later and friends and family can hear her speak with her own voice instead of just a generic digital voice if she should need that someday.

The psychologist we worked with is based out of a cancer institute and specializes in working with terminally ill patients with young children. We are now talking to Jack more openly about ALS and helping him understand why Mommy’s hands and legs don’t work as well as they used to, why she uses a wheelchair or a walker (we call it a wheelie) and why mommy needs to rest her voice. We are not calling it an “ouchie” because we don’t want him to think that when he gets an ouchie it could lead to the same results. We are also helping shape the narrative he is developing for the new normal he is experiencing. It has been incredibly empowering to have access to such a skilled psychological team to help us with these conversations.

Kim is also deeply engaged in a daily practice of physical detoxing, meditation, and spiritual practice. Each day I see her spirit grow stronger. Kim has had a series of visits with healers who are helping her with energy medicine and she has had several very positive experiences that included past life regression, ARCH energy work, reiki, and some unique “special blends.” She is making sure she gets this energy work done at least once a week to keep her personal car battery well charged. I know she will be blogging about these experiences after the holidays. We are also looking forward to doing a retreat at Kripalu soon.

There are more medical visits ahead and we return to Boston soon for a trip to the speech clinic but for this week we are catching our breath and enjoying family, rest and Christmas with Jack.