by Christina Kamarauskas

My dad was always a guy’s guy, who projected a tough exterior. However, when it came to the holidays, he was a total softie and a kid at heart. Although many people in his life may not have seen that side of him, those closest to him knew how much enthusiasm he had for holiday activities. The ones that stood out to me as his favorites were carving pumpkins, dyeing Easter eggs, and decorating the Christmas tree with shimmering strands of tinsel. These simple traditions and joyful moments with my dad produced some of the best memories a kid could ask for.

My dad’s struggle with FTD has been such a difficult thing to witness. He has reached the point now where he is unable to talk or walk. Yet, when we talk to him, it’s clear that his comprehension is intact. The fact that he can understand what we’re saying, but not communicate back to us, seems so unfair. I try so hard to be glad that our messages of love still reach him, but his inability to carry on a conversation feels especially cruel.

In light of the many losses we’ve endured due to FTD, I’ve become determined to continue creating positive memories and infusing our holiday activities with joy. Rather than allow myself to get upset that my dad can no longer carve pumpkins, I decided to create a new tradition. Placing a large pumpkin on the table in front of my dad, I put a marker in his hand. After having him write his name on the pumpkin, I told him I was going to say a word out loud that I thought described him, and if he agreed, he should nod yes and we would add that word to the pumpkin. As I shared with him all of the characteristics that I see and admire in him, sure enough, he would nod in agreement, and we wrote each of them on the pumpkin. Not only did this give me the opportunity to remind my dad of how amazing he is in my eyes, but we also created a new tradition together.

My favorite moment from that day is when I asked him if he was handsome. Not only did he nod enthusiastically, he cracked a smile that verged on an audible laugh. Once again it became clear that my dad is still here with me, despite the absence of his voice and whatever doubts that others may have. Whether my dad retains this memory or not, we shared that special moment – one that I will certainly never forget.

If you take anything from our story, let it be this – you can’t give up on your loved one, even though FTD is hard on you both. Tell them how much they mean to you. When they lose their voice or mobility? You must become their advocate and their hands and feet. Speak up on their behalf. Walk through it with them. And create and cherish whatever glimmers of joy you can on the FTD journey. Sprinkle them everywhere, like shimmering strands of tinsel.