Motherhood, Infertility and the FTD Journey

Hi friends. Thank you for clicking and taking the time to read, I promise I won’t make this too long, but I have long waited to share what’s been weighing on my heart. I wasn’t sure if it was too “niche” or off-topic, and I didn’t want to bother anyone… but when I posted on Instagram asking if anyone was interested in hearing my take on this topic, the response was an overwhelming “YES, PLEASE!”. 

Many of our dedicated listeners (and of course our Re-Members) are aware that I have been trying to conceive our second child (or as I’ve been calling it “complete our family”) for over 2 years now. We’ve been trying since before Remember Me began, and my mom was about 3.5 years post diagnosis. We were “in the thick of” her journey, as Rachael and I like to say.

For those of you who don’t know any background info, my husband Mike and I have a son, his name is Liam, and he was born when we were living with my parents and caregiving for my mom Lia who was living with both Primary Progressive Aphasia and ALS. 

At the beginning of my pregnancy, my mom was very behaviorally symptomatic, but still could communicate a bit. When I told her the news that I was pregnant I will never forget how she looked at me blankly and said “But can we go to Wegmans now?”...

Needless to say my pregnancy was not spent shopping for clothes with my mom and reminiscining about my mom’s time as a new mother — instead I carried on working and helping care for her… watching her change month by month.

By the time Liam was born my mom had very few words left. I remember a few weeks after Liam was born I saw her staring at him in his bassinet. She looked so defeated as she whispered and said “aphasia”. 

Those early days postpartum I was still trying so hard to be on my mother’s FTD journey with her at every step. I felt like one of my hands was holding hers and the other was holding my newborn baby.  To say it was overwhelming would be an understatement. It was the absolute hardest year of my life.

I juggled (well, stumbled) trying to be a new mom, a wife, and support to my mom and dad. I was in such a daze and I had already been in a state of constant stress since my mom’s diagnosis, that I don’t think I could see how unhealthy I was. It had just become my norm. 

Not even my therapist knew how deeply I was suffering until 6 months after Liam was born. I couldn’t hold it in anymore. I was overwhelmed, lost, and undoubtably suffering from postpartum depression. There were so many factors that came into play here, but one of the hardest things was how similar my mother and my newborn baby’s needs were. The parallels were heartbreaking – when I was looking for daycare for Liam, we were looking for my mom’s adult daycare– when we started feeding Liam pureed foods we started to purée my mom’s food to help with her choking. Looking back I don’t even know how I processed it all. I had dug myself into the deepest hole of darkness that it was going to be impossible for me to climb out of it alone.

When I finally started to share how deeply I was hurting, my husband and I decided to move back to the city and have our own space. I felt like an absolute failure, like I was abandoning my mom and my dad. I was in such a low place that even though I knew I was making the right choice, I wasn’t yet strong enough to accept it and be easy on myself. But I started to get the help I needed, and have my own space.

After I adjusted, I started to feel the clouds separating a bit. I still helped my dad when I could, and was always there for emotional support, but I started to find some balance that helped Mike and I become our own little family.

As time went on, and I felt stronger and stronger. I could hold on to small moments of love between my mom and Liam. I started to really be present with Liam. I started to be creative again and started to find joy in my life. I planned my first large fundraiser with my mom’s artwork, Art For Amalia, which was a huge success. Not just because of the money and awareness we raised, but because of how proud I felt that I started to come out of the darkness I was living in. I started to let more friends back into my world. I was starting to carry the situation with my mom a little better, while still trying to live my life.

As many months had passed of me feeling myself, my husband and I started to think about continuing to build our family as we had dreamed. We always wanted to have 2 children, and we were trying our best to proceed with our lives as best we could, as we knew this is what my mom would have wanted. 

When we started to try to conceive we were very thoughtful on timing because the process with Liam was very quick. It was like we decided we wanted a child and then I was pregnant… so based off of that we (stupidly) thought we would get pregnant again quickly. 

Around that same time, the world was shut down, and Rachael and I connected and started to build Remember Me. I confided in my new friend that we were trying for #2… and I remember after about 4 months, Rachael mentioned it in an episode! (True Rachael form, ha!) and I was like oh well, I’ll keep that in, because we’ll get pregnant soon! 

Spoiler alert: I did not get pregnant soon.

A few months after Remember Me launched, my mom had really taken a turn. She was entering “the end” – although we didn’t know when the end was. Seeing her suffer was ripping my heart into pieces… and I was in a constant state of anxiety about when “that” time would come for her.

Well meaning friends and family told me I wasn’t getting pregnant because of the stress, and honestly I agreed. My mom was dying. We were in a global pandemic. What could be more stressful than that? We kept trying, but as that time was filled with a lot of stress and grief, it was not the main focus of my life. I would get pregnant at the right time (but that time better be soon, I thought!). Another spoiler: it did not come soon.

I once saw this quote about infertility that so beautifully captured how I felt about the journey. I couldn’t find it to put it in here, but I will paraphrase… 

“Infertility felt like I had gone out on a jog around the block and the next thing I knew, I was miles and miles from home, with no idea when I’d be back.”

Ugh I resonated with that so much. And honestly, I think it applies to my grief journey too. In December 2020, I lost my mom. My sense of home. I felt so strange for so long that I never knew when life would feel normal again - and at the same time I was continuing on my fertility journey, hoping that I’d soon have some news to bring some light.

Months and months passed, filled with grief and loss of my mom and this desire to also keep moving forward with my life and my family plan. The months turned into a year. And then a year and a half, and then two. Lots of tests. Lots of OBGYNs. Technicians. Doctors with odd bedside manner like “Wait, you’ve had a baby before?”. Fertility Clinics. Acupuncture. Nutritionists and more.

All along the way learning that my son Liam had been quite a miracle.

I started to pump myself with hormones and become basically the mascot of the fertility clinic — I’d walk in and see my Phlebotomist friends again and again, week after week. I took breaks. I took trips. And continued to power through my journey to complete my family. I’ve picked myself up again and again – more than I ever thought I could. I’ve relied on friends, listeners turned friends, my sweet Rachael, my sisters, my aunt Pia…and honestly sometimes strangers!

Sometimes I’ve really felt like “a lot”. Like I never have good news. Like “Hi, I just lost my mom to a devastating neurodegenerative disease, and I’m struggling with infertility.” Geez. Who would want to be friends with me!?

I digress, I’ve thought a lot about the parallels between my journey with infertility and my journey with my mom’s FTD. And I think it’s quite simply explained like this –

When your loved one has FTD, the whole vision you have for your life and theirs is wiped out of the picture. Your life changes in a blink and you have no idea how everything is going to play out or where and how you’ll end up at the end of it. You just know it won’t be what you thought.

Infertility is similar. You have a vision, a dream, a hope for your family, for your life, and you realize that it may never turn out - or go the way you planned. Your mind has to recalibrate everything. You live in a state of uncertainty and grief.

I wish I could end this on some beautifully profound and uplifting note, but some things are just as they are. Difficult. Heavy. Hard to wrap up with a nice pretty bow. I pray to one day have the family I’ve always dreamed of. Every day I just chose to have hope that in the end I will get through this journey I’m on. And I will try every day to accept the good and treasure the things right in front of me, like my beautiful, perfect Liam. And I’ll always be thankful for the time he had with my mom — even if it was brief. The love was totally there.

Thanks for listening, friends. Sending love to you all –

xxM