I am so very sorry that it has been five months since my last CaringBridge update.  I thought about it a millions times but I haven't taken the time because when I do, it seems to take forever for me to get it all out in a logical manner.

I am not really sure where to start since it is been so long, so I will give you a quick highlight of the last four months and then tell you where we are NOW.  When I last updated you in November, I was super transparent about my feelings of the lack of contact and support that some of Brian's friends and family had had with him..... Although I felt badly about being so harsh, I do think that it was divinely inspired because many good things came from it.  Some of his friends said that is what they needed to hear to make themselves do what they knew they needed to do.

In November and December Brian had several special visits.  Brian had wonderful visit with his friend Phil, who now lives in Norway.  Phil made a special and intentional trip to come across the ocean to spend a few short, but very meaningful days with Brian. I think Phil needed it as much as Brian did.  In December, Tommy James, an old helicopter Army buddy that we met while living in Germany came to visit Brian.  It was like no time had passed as we reminisced about the good old days in Hanau, GE.  It is so beautiful the way old friendships can fall right back in step.

We also started seeing more support from our small group at Hunter Street.  They started coming to us once a month for small group since Brian can no longer come to them.  His friend and fellow "crazy" ultra runner, Bob Watters, has been a constant in companionship with Brian. Coming over for visits every week or two and sitting with Brian for hours.
Brian's friend, Rich Glaves, has showed up many times to visit or stay with Brian when I needed to leave.  Rich is always good for a little comedic relief, and we need all the laughs we can get :).  

The man that has showed up time and time again, and continues to show up every week to shave Brian, is Mike Davis.  When Mike shows up to groom B, it is a totally beyond salon experience.  He give B a hot towel shave,  massages his neck, shoulders and arms, trims his nose hair, cleans out his ears... just a few things that he does.  I even bought him an barber's apron that says "Magic Mike" (picture below :).  The man gives Brian two hours of his full attention.  Y'all, I  cannot express enough the gratitude I have for Mike Davis.  I love you, Mike Davis.

The community has been absolutely amazing providing meals via "Meal Train"   We have been fed so well, and loved so well. This has been a blessing to me because I rarely have the time or energy to devote to cooking.  I am so grateful to everyone who has taken the time to bring out meals, send gift cards, etc.  Some of you have cooked multiple time!  You are a blessing.   

February- Roby married Joey Mollica, our new son, Feb. 3rd.  This wedding could not have been more perfect!! The day was perfect, the venue was amazing, the bridal party was beautiful!  Everything went so smoothly that I felt like a guest rather than the "hostess" of this event.  All of this ease was due to my dear friend, Corinne Ver Meer, who took on the role of wedding planner the minute Roby got engaged.  I will never be able to fully express the gratitude and love I have for this woman!!!!  Her sweet and amazing husband, Anthony, served as bartender/everything else Corinne needed him to do.  Love you, Antoine.  And my sweet friend Sasha and her husband Lance selflessly volunteered to be servers at the wedding.  Sasha and Lance, you are the best servers ever!!!  My group exercise staff paid for the flowers, the cake, and breakfast and lunch for the bridal party.  My heart overflows with joy and love for all of the above people who made this day perfect.  I felt unbelievably bless during this time.

A huge thank you goes to Brian's mom, Elaine, and Brian's brother, Todd, who cared for, dressed, transported, ect, Brian during the weekend of the wedding so that I could focus on Roby.  I am eternally grateful for their help.

Ok, now onto what you are really here for....how is Brian?  First let me say, that Brian is the bravest person I know.  He has handled this journey with courage and grace.  HE IS A ROCK.  I am a disintegrating piece of sand compared to him. 

Over the two months he has slowly lost complete function in his left hand (this was the only limb that was hanging on to function).  He is now unable to move his legs, arms, or hands.  If he has an itch, we scratch it, if his nose needs cleaning out, we clean it, if he gets a "hot spot" then we move him; we feed him, we do everything as he is unable to do nothing.  He is still eating a little bit through his mouth but we have to put it in the food processor to get it completely smooth so he does not have to chew at all.  We give his meds through his feeding tube.  We feed him a liquid meal a couple of times a day through his feeding tube.  He is still able to move his head a little bit, and is able to talk (with great effort) as long as he has his bi-pap/triolgy machine on.  This is the machine that blows air in so his diaphragm can expand (this is not O2).  If he doesn't have it on then he is unable to take a deep enough breath to be able to talk.  Brian thinks that his ability to talk will be gone within the next month, but of course, you never know. 

We spoke candidly with our Hospice doctor last week, and Brian asked him what his estimate on timeline would be.  He said he would guess two to four months.  But, of course, with ALS, you just never know.  Brian has started planning his funeral with more detail than I planned my wedding.  If you know Brian, he doesn't do anything half-assed.  Brian actually feels "lucky" to be able to have the time to actually put thought into what he wants his funeral to look like. The funeral that Brian is planning is actually not about himself at all, it is about HIM.   It is about the bigger picture in life and life ever after.  I would urge all of you to come to this service if at all possible because I do think it has potential to be life changing. 

The past year and a half has been long and arduous, and sometimes I don't think I can bear another minute of it.  Luckily, in February,  Brian's mom, was able to move in with us several weeks out of the month.  I could not do it without her help.  There is always something to be done for Brian and sometimes it takes two, three, or even four people to do it.  Roby and Mitt have continued to be such a help to both of us.  Often being asked to do things that a child should never have to do for a parent.  However, they never complain (at least to us ;) and always run to help when needed.  I know that this experience with make them more compassionate, empathetic, and beautiful humans.  They are truly special "kids" and I have never been more proud.

As we continue this journey, we know that it will only get harder.  We ask for your genuine prayers for strength to go on and also peace with what this life has brought us.  We greatly appreciate the help that you have given us already, and will continue to accept more, because I have discovered that I cannot do it on my own.  You just have to know, if you are here, you may get drafted into doing something you hadn't planned on doing ;).  If you want to hear Brian's voice, then I would reach out sooner than later. Thank you for loving us well and helping us, hopefully finishing this race strong.

With love, Robyn, Brian, Roby and Mitt