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Ten Things

This was a really good week! Which always makes it easier to find ten things to be thankful for, but it important to me not to take the good week for granted.

When I was nervous about bringing Bridget to an event this weekend, not only did the hostess with the mostest immediately call me, she stayed on the phone with me for an hour to discuss different strategies moving forward.
That when my favorite SPT friend saw the emotion board school sent home to help me with discovering why Bridget was upset told me not only was I doing it wrong but I was a dumbass for not talking it over with her in the first place HAHAHA
That Bridget sat for THREE hours in a Dunkin’s while I met with another mom, someone I hadn’t seen in years and we were able to reconnect in such a special way.
That Bridget walked a mile in her school’s fun run/walk. Okay it was a forced march, but she did it.
That when I went to do something drastic with my hair, the stylist not only talked me out of it, but asked (and listened!) to why, came up with a plan and told me to think of it for a few weeks.
That my 93-year-old MIL that can manage to walk a mile and a half to bingo but cannot manage to get out of her own bed without falling, came home from the hospital as feisty as ever.
That event I was worried about attending? Bridget did awesome, chatted with others and had the best time.
That Bridget’s medical team listens to me and works with me.
That I was able to see Bridget at her school, surrounded by her true peers and see their friendship in person.
That I could be there for a friend this week, instead of them always being there for me.

And one more, that this week there were more moments like this

Ten Things

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This has been a better week than most. Maybe because I had a long weekend away that was not only made my work week shorter but allowed me to step away from the WIFI and cell phone. And there are at least 10 other things that I am thankful for this week:

Laughing at a picnic table, in 40-degree weather, declaring that guys don’t want to f*ck skunks (if you know you know) among other discussion absurdities at almost 1am. And not apologizing to our other camper friends for keeping them up with our giggles. Instead saying; you should have joined us if you were awake 🙂
Enjoying a bottle of wine (each) in a friend’s camper as we remembered friends lost too soon and deciding that if we were just left in charge of the world, life would be perfect.
That last night after having to leave a retirement party 4.2 minutes after I got there because Bridget was triggered by some unknown something, today I spent almost 3 hours at a Dunkin’ with her as I caught up with another non-typical mom. We laughed; we cried and created a stronger bond with an ally in this unexpected and unasked for life.
That I have a boss that not only encouraged me to take the extra-long weekend, even though I’ve had so many days off this year because in his words: Those were for medical appointments, this is for you.
That a friend called me out for “losing hope” and reminded me that I am not losing hope but reimaging Bridget’s future.
That I spent 2 hours talking on the phone with my PACS1 friend from Australia. What was supposed to be a quick chat turned into a really informative conversation and an agreement that we cannot let another year go by without another one.
That when I text a friend that I haven’t corresponded with in ages asking if she was up for a bit of “snark”, she not only said “hell yes” but then texted me throughout the night as we caught up on one another’s lives.
That #6 & #7 reminded me that I have not done a great job of keeping informed about what has been going on in my friends lives. That this reminded me that I cannot self-isolate but be there for others. And more importantly, that even though times goes by too quickly that does not mean too much time has gone by to reach out to what could be a lost friendship, and instead recenter myself on why these connections are not just a band aid but a vital part of my life.
That Bridget’s latest medication regimen seems to be working. She is having more laughter and less tears in her day. Yes, she is stimming all the time, and we are not back to baseline (yet) but my girls is slowly coming back to me.
That while I mourn the loss of summer, I am so enjoying moments like this.

Ignore my attempt at trying to keep basil alive HAHAHAHA

Deep Breath, there is so much to be thankful for

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It would be easy and probably forgivable if I allowed myself to stay in the pity party mode with all that has been going on with Bridget lately.

Those that know me, know that I set a timer on those moments, because there is way too much to celebrate. Even on the days when what I may be celebrating is that I realized my shirt was on inside out before I left the house and not midway through the workday (true story).

With the end of Summer this weekend (where did summer go!), instead of remembering that this summer was full of really hard moments, I am going to celebrate the best moments that happened in between all the crap ones.

My eldest used us as a pit stop on her way to India and a trip of her lifetime to start the summer off. We hadn’t seen her since Christmas and let’s just say someone was very happy to see her.
In all the craziness of catatonia, we found a new team of Doctors who meet with us once a week via video and explains things in a way that makes sense. They don’t talk at us but with us and truly care about improving Bridget’s quality of life.
An unexpected phone call from a researcher who is studying effect of PACS1 on the brain and learning that not only has he not stopped studying PACS one, but research is also continuing by others across the States.
That my office has been supportive and helpful with all the expected and unexpected time off for Bridget appointments. Bonus: they never judged when I took a “me day”
Friends that check in, friends that have been there when they can and accept when I cannot be there.
That my mom still goes to Barry Manilow concerts and dances like a teenager.
Pinot Grigio.
Our annual camping trip in the land without WIFI or Cell Service. I was so nervous about how Bridget would do. There were low moments, there were moments where she was not herself balanced with moments in the pool (her happy place) and the campfire where she was the girl I remembered from summers past. That we were surrounded by friends that said there are no words, but they are always here for us.
While we have not been able to do date nights, we have a firepit. Our backyard escape has been where we can reconnect and remember that throughout it all, we are a couple first and Bridget’s parents second.
That while summer might be ending this weekend, there is still time for moments like this: