It’s 2am on Christmas morning and I’m wide awake. My mind has been consumed with thoughts of you the past couple of days…days filled with traditions we hold so dear like the SBRM homeless guest Christmas feast, cookie decorating, our family celebration with the ladies at Bethel House, the Christmas Eve service at church and going on a Christmas light tour. We feel your absence so deeply. We miss you. We miss your enthusiasm and sense of wonder for the holidays. We remember how you enjoyed Christmas last year…how you began to really grasp the traditions and anticipate all the fun of the season and I remember thinking, even then, how fun this Christmas was going to be as a result. But you’re gone and it’s just so hard to accept…still. Today, Christmas Day, marks 5 months since you passed away.
Your Dad, Wilson, Max, Olivia and I visited your gravesite yesterday and, I admit, it was harder than I expected as I was reminded of special memories that are so tender…memories like singing “Rudolf the red-nosed reindeer” with you, yours and Livy’s Christmas Eve sleepover tradition…watching you proudly hold a real candle at the candlelight service and your squeals of delight over the simplest pleasures. It’s sweet to see how each one of us at different times and in different ways is choosing to honor you in the traditions we shared with you as well as include you in the new experiences of this very different holiday season. You aren’t far from every thought…from every breath.
I wish I knew what you’re doing this Christmas. I wish I knew what new experiences you’re having and with whom you’re spending your time. There are so many thoughts, so many impressions and feelings swirling around that are impossible to harness and organize. I guess the only way to do today is to get swept up in the swirl, ride the wave and remember that we, as a family, are forever bound. Merry Christmas precious boy! Give Jesus a birthday hug for me. Longing for you this morning, Mama
I just heard Faith Hill’s “Where Are You Christmas?” on the radio. I’m not sure I ever really listened to the words of that song before…what a beautiful song. I think I just adopted it as my theme song this holiday season…”My world is changing. I’m rearranging.” Yep, that kind of sums up where my heart is today. But how ALS and Rudy’s absence is changing this Christmas and our family’s world in general is only magnified by what has been going on in our community for the past 12 days.
The Thomas Fire that broke out in Ventura County a week ago last Monday made it’s way to Santa Barbara County on Sunday and is snaking it’s way up through the south county communities of Carpenteria, Summerland and now Montecito. We aren’t in any fire danger here in Goleta but Santa Barbara and Goleta have been blanketed with smoke and ash since the fire broke out which has severely impacted our community’s day to day. Our local schools closed last Thursday and won’t reopen until after New Years, many businesses have shortened their work days significantly (if not closed all together) and we’re all donning attractive face masks when out and about. It has been heartbreaking to see many we know affected by this massive fire (currently the 4th largest wild fire in CA history) and it will continue as containment is not expected before January 7th!
So far, the festive holiday events we typically participate in have all been cancelled or postponed…certainly adding to the question “Where are you Christmas?”. It isn’t feeling particularly festive or Christmasy around here. We were doing a great job making the most of the situation the first few days…Olivia had some friends over to bake Christmas cookies, we’ve watched a crazy number of Christmas movies and got creative with some crafts but the negative impact is starting to surface. There is just so much to be depressed about and peppy, positive Patsy is fading. Thankfully the house is filling up as Max arrived home on Wednesday, Wilson comes home later today and Aunt Andi flies in from the east coast this afternoon for a quick visit!! That’ll switch things up and lighten the load considerably! It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us is…always.
I’m particularly thankful, now, that the MOHD Squad got to go down to San Diego the weekend before the fire broke out to see Max perform in his PLNU concert choir Christmas show. The variety of numbers performed made the show fun, festive and quite moving…it was the perfect way to kick off THIS Christmas especially. I captured their rendition of my favorite carol…
Merry, Merry, MERRY Christmas dear ones. May these last few days leading up to Christmas be filled with GREAT JOY, SUSTAINING GRACE, PERFECT PEACE and a STRENGTH of spirit and of mind that is truly beyond what the natural world can muster! Thank you for your friendship and love.
It seems most of my head space these days is spent praying about and contemplating the pros and cons of potential options available to me. The reality is that there are a ton of theories out there but very few proven options.
Western/Conventional medicine can offer me two options at this point:
Radicava – a medication that was FDA approved in the US in August. Radicava has been proven to slow the progression of symptoms in some cases of ALS! (PRO) It is administered through intravenous infusions -much like chemotherapy…(two weeks on, two weeks off initially and then 10 days on within two week period, two weeks off each month thereafter)…(kind of a CON ’cause it’s pretty consuming).
Stem cell treatment through a clinical trial at UC Irivine. I applied to be a part of the study several weeks ago and they are conducting applicant interviews now. On the surface, it sounds quite hopeful with participants in previous trial phases reporting not only a slowing of symptom progression but also reversal of symptoms! (Super Big PRO) To participate in the study, however, I must commit to the 11 month study and NOT take Radicava. Risky because my functionality could change a great deal in 11 months and I’m not guaranteed the stem cell treatment as half the test group will be given a placebo. (CON) I’m simplifying it but that’s basically the gist. I don’t mind being a lab rat but is the risk of diminished functionality, physical effort, time away from family, etc, etc worth what I’d be getting (if anything) from the study? Hard to say.
Alternative medicine can offer me a variety of treatments to help manage the disease…not bad just time consuming and often expensive. (PROS and CONS to them all)
The challenge is to find a comfortable balance between getting caught up in the hysteria of all the proven and theoretical options out there AND getting caught up in a fatalistic attitude. Both extremes are paralyzing…finding a balance requires a conscious (and ongoing) effort to focus. It’s exhausting and, to be perfectly honest, my heart isn’t in it.
What I’m deliberating day in and day out are details related to disease management. For 8 1/2 years, our family submitted to an intricate system of disease management with Rudy and as I wrestle with the details of my disease and cry out to God for help, I’m discovering I don’t want to submit to disease management anymore. I don’t want to “treat symptoms”. I want a system overhaul…I want a system reboot…I want my nervous system to resurrect.
Let me be clear. I’m very grateful for conventional medicine, current technologies and the research & resources donated to get us where we are today in ALS treatment. I’m also very respectful of what alternative medicine offers people like me. I appreciate it, I’m doing due diligence in all areas and I’m engaging in the therapies that seem to fit me best but what I really want is for God to heal me this side of heaven. I’m sure some of you are saying “well, duh!” but it’s an involved and thoughtful process for me and the subject of miraculous healing could be a blog post of it’s own. I’ll share my thoughts on it sometime but for now I’ll just say I’m doing my due diligence in this area as well and seeking God for wisdom to truly understand what my options are and for discernment in determining what is best for me and my family. Will you please join me in prayers for wisdom and discernment in my process as well as the motivation to put on my big girl pants and do the necessary legwork? Thank you dear friends! ‘Grateful for YOU!!!