And, when you want something, all the universe conspires in helping you to achieve it.
― Paulo Coelho, The Alchemist
I don't think I'll ever forget the night that I laid next to my daughter in her bed, holding her tightly as we both cried our eyes out.
The reason behind our shared tears was because I told her that I wasn't sure if we'd be able to remain in our home much longer because we didn't have enough money to continue paying our rent. I absolutely hated causing her to have any worries or pain, but I really felt completely hopeless and knew it was important to prepare her for this possible change.
While I really cannot remember my exact words, I know that they were spoken with my knowledge gained as a Child Life Specialist and experience of being her mother. I spoke with the openness and honesty that she needed to hear, but also tailored it to what my beautiful girl needed to know. And then she started crying, and so did I.
As I held her, I reminded her that we would still be together as a family no matter where we lived, mentioning that it would either be in another home or with a relative here in the Chicago area or my hometown of Pittsburgh.
I told her that because it was what I knew she needed to hear. But in the days leading up to this moment, I found myself faced with my greatest fear: That this disease may tear our family apart while my husband still retained some physical abilities and cognitive and emotional awareness. But she didn't need to know that, not as a five-and-a-half-year old Kindergartener.
So instead of saying anything else on the topic, I reminded her that God and all of our angels in heaven are always looking after us. I told her that we should say a prayer asking for help, and so we did.
We finished the prayer and while I was tucking my daughter into bed for the night, I heard a text alert from my cell phone in the next room and had a feeling that my prayer had been heard. After our goodnights were expressed, I arrived to my room to find a text from a very dear friend and someone who I have always felt a connection to since the day we first met. We texted for awhile that night, and with each text I felt more that our now decade-long bond was always God-sent and he directed her to me at that moment when I needed someone to guide me along this next path of the journey.
This night was Thursday, February 3, 2022. which I not only know because of the forementioned text exchanged but since I ended up creating this blog the day after.
Putting our story out into the (cyber) universe was something that I had thought about before, but always held back out of respect for my husband and his family. Writing has always been a natural outlet for me, and I always remembered the therapeutic value of the blog I had during my twenties, but this chapter of my life was much more private and sacred to share. And more importantly, the story wasn’t only mine to share, as well as one that been filled with a multitude of questions, doubts, dismissals, fears, and unknowns.
But having lived through this disease for nearly a decade and educating myself on the array of symptoms, other possible causes, suspicions of early-onset neurodegenerative diseases, and the formal diagnosis of Behavioral-variant FTD, the time finally arrived when I had focus on the goal I've always hand on my mind and in my heart, even if it meant doing something new or different.
And that hopeful plan has always been this:
To keep our family together in our home, for as long as we can.
All four of us.
My husband, Our daughter, Our Dog, and Me.
In the home we have created for ourselves, while living through a global pandemic, and a challenging disease.
When I look back on the last two months that began following a night of tears and desperate prayer, it really is all a blur. There have been so many challenges that our family has faced, but also some incredible blessings and new opportunities.
Through it all, I will say that I have really come to find a strong sense of clarity and confidence, which may sound completely ironic given the devastating struggles that our family continues to face. But I fully credit the support of family, friends, colleagues, and the FTD caregiver community who have helped me find the strength from within to be more open about our journey and the courage to ask for more help. I have felt the strength from your thoughts and prayers, and greatly appreciative of the support you've given through generous gifts and donation, texts, messages, and calls, and the care you've provided to our family in the form of school drop-offs and pick-ups, playdates and family get-togethers,
While my words of gratitude are what I share now, please know that I really do believe that you have helped me along this journey and because of you, I will keep going and fighting for him.
So thank you. From the bottom of my heart and all that I have to give, thank you.
Thank you for everything.