That’s my mom. She’s one of the loveliest, feistiest, smartest, funniest, completely bonkers, loving people you will ever meet. This post is about her.

The last few years has been a bit Best of/Worst of. I’ve landed a lovely, stable job with an awesome school district. I’ve found a group of solid, supportive friends with whom I have fantastic fun. I’ve been dating pretty regularly. I’ve been more active and introspective about my health. Good things. All very good things and I’ve needed as much to help me rebuild my life without my father in it.

FYI: My father very suddenly passed away in Oct of ’12 from a heart attack while taking a nap one Saturday. He just laid down after a morning of work to take a rest and didn’t wake up. It rocked my and my family’s world and we’ve essentially been making things up as we go since. Dad was what always made everything make sense and feel safe. I miss him every day.

My family and I have done our best to keep going, my mom especially. We’ve moved her out of the house in which Dad passed away to an adorable and much more manageable apartment.  She’s reconnected with an old beau or “special friend” as she likes to call him who regularly takes her out to eat at obscure, ethnic places, LA Master Chorale concerts, Shakespeare readings at Vroman’s in Pasadena, and all those other things that make my mom’s heart happy. He is also a champ at driving her to her doctors appointments which takes a huge burden off of us kids. He’s good company for her and I’m grateful for him. Her fibromyalgia continued to be a burden but it’s something we all have accepted is here to stay. Mom’s health has always been a bit rickety. Before the fibromyalgia set in she’d always had a bad back and struggled with her weight. There was always something medical happening with Mom. It was just, kind of, part of her Momness…

Despite all that, Mom, for me at least, is my strongest connection to my dad that I still have. She is made up of everything that he loved and admired. Her presence and person is all that more precious to me now for that. She is also my glorious and timeless mom that I love and look up to in so many ways. Like Dad was my mental and spiritual touchstone, Mom is my emotional one.

So the universe continued to test mine and my family’s metal when in mid-March we took Mom to the hospital because she was having some issues breathing. Her speech had notably slowed down since January and swallowing and things had become harder for her so finally when breathing felt labored my brother who lives with her said “call an ambulance” and off to the hospital she went and stayed there for a month. It was a lovely hospital that specialized in stroke victims (which is what they initially thought was the issue) but after a few rounds of every test and them not being able to find any physical trauma that explained her symptoms they handed over her case to a neurologist…

She came home from the hospital just before Easter but continued under her neurologist’s care and after a month of looking at everything he made an official diagnosis – ALS. Lou Gehrig’s Disease. Steven Hawkins’ issue. My mom was going to die with difficulty and sooner than any of us would like. The news came out when we all got together for Mother’s Day. When we were all leaving and saying goodbye after a lovely brunch Mom said “My neurologist wants to call a family meeting.” and I looked at my brother and very seriously asked “Why?” and he said “Well – the neurologist has gone from thinking that it may be ALS to it definitely being ALS…” and my heart broke. Audibly broke.

But I reacted the way I do whenever I’m involved in any situation that starts to red zone. I clenched my jaw, nodded my head, hugged everybody as tightly as possible and started furiously researching everything I could on the subject. And cried. I did that a lot when I got home. I’ve made myself develop the habit of trying to pull out any positive thing going on I can and focusing on that. I think clearer and problem solve better when I feel I’m working for something positive than just drowning in the swaps of sadness.

Here’s what I came up with:

1) I still have time with Mom, however compromised it may be, I still have it. I didn’t get a chance to mentally frame myself to living without a father. I just got a phone call that informed me of my new reality. That’s it. So at least I get a bit of a transnational period to prepare for a world without my mother. I get to ask her what her final wishes are. I get to know what her burial preferences are. We can plan the funeral. She can tell me what lipstick she wants to be buried in. All those little things that make saying goodbye a bit easier – I don’t have to guess on those like we did with Dad. Those family conversations, sitting around, discussing what we thought he might want but not really knowing – those were the worst. No one should ever have to field those emotional waters when already burdened by the grief of losing someone. No one.

2) At least we know what’s going on. All we knew for months was that something was more wrong with Mom than there usually is. Now that we have a diagnosis I  have something to research, something to question, something to seek treatment and benefits for, something to advocate for, something to push up against. Before it was just this nebulous “Mom isn’t doing very well” that just made everyone feel helpless. ALS certainly doesn’t enable anyone anymore than “Mom isn’t doing well” but for me, for my personality, having a reason she isn’t doing well is a strange comfort even if the results will be the same.

3) I know what to do. Losing Dad has conditioned and coached me on how to lose a parent. I’ve fielded these emotional waters before. I hate them, but they’re familiar to me. I know that when I feel a bubble of sadness come up from all the swirling emotions going on that I need to find a quiet moment or a good friend and just let it burst, that I can’t emotionally afford to shove it back down (as is my tendency). With things this significant, with feelings this big, I have to vent them little by little when they get close to the surface or else they, with all their bigness, will fester and steep and potentially do serious mental damage later on. I’ve learned to respect those moments, those bouts of pure feelings I just have to experience. I put down my phone/book/iPad and find my favorite chair and let it come. It’s much easier knowing that it swells and then ebbs and in a little while I’ll be back to OK. Like menstrual cramps or planks, they hurt for a bit but they have an end. They slow me down a bit too but I’m OK with a slow down now to make sure I don’t break down later. When grieving a parent, figuring out how to keep going is the most important thing. No Artax episodes for me, thankyouverymuch. Neither my mom or my dad would ever want that for me. Being the most functional and glorious version of myself is the best way to honor them and I will not let them down by giving up. I just wont.

Well we met with Mom’s neurologist who is incredible and pragmatic and very good at what he does and is half in love with Mom (as anyone who meets her) and he was a very strong advocate of not poking holes in Mom or unnecessarily medicating her.

Sidenote: There is only one FDA approved medication for ALS, it cost upwards of $2000 a month (which is unconscionable), is not covered on most insurances, and has only been proven to extend life for about 3 months. COME ON medical research community! I hope that Ice Bucket Challenge money has lit some kind of fire at their feet. 

He was very honest. This disease has 100% mortality rate and those patents for whom it starts in the face (like it did with Mom) have a much shorter prognosis than those who it didn’t. His and our main goal is to make sure that this disease doesn’t rob Mom of her dignity and that she can peacefully and naturally pass at home surrounded by the things and people she loves. No tracheostomy tubes. No sterile, lonely, nursing homes. None of that. They gave her 2 months – 5 years. Mom has informed me she’s decided to take 10 years like any good, stubborn Dees woman worth her salt would. I told her I thought that was a good number.

I don’t know how long I have or how long it will be before Mom loses her ability to speak and exhibit her Momness but for right now, for today, she can still giggle with me and hug me and breathe on her own and I’ll take that. It’s enough. It has to be. Until it isn’t. But that’s a different blog post for another day.