My Father is a Hero
Editor’s note: We had two really strong Father’s Day posts, so we are extending the holiday to celebrate another one of our HAS community’s heroes.
When I went to study abroad in Spain in 2008 (before international cell phones were the norm), I got on the flight to Barcelona with a promise to call when I had a new phone. As I stood on the sidewalk with my luggage alongside 30 other college students I hadn’t met yet, a hotel employee brought a phone out to me. In typical Liam Neeson style, my dad found me. A retired Trenton cop, and ceaseless prayer warrior, my dad was born to be a protector.
When I was first diagnosed, he sat down on the side of my hospital bed, took my hands, and said with tears in his eyes, “You are not alone. Whatever you need we are here. God loves you and He has a plan we don’t see yet, but know that I will do anything I can- if I need to leave my job or we need to move- anything you need- I’m here.”
Initially, that meant driving me to work before his work day started (even though he often got home at midnight). Then, I needed help setting up; as a psychologist, that involved setting up games for groups, arranging my coffee and phone within reach, and laying out materials for the whole day so I could access everything. A couple years ago, that transitioned to retiring to be home with me and my adorable (now almost 2 years old!!!) nephew full-time. My nephew is a constant joy, who never stops running unless he’s briefly asleep, so a lot rests on my dad. He can feed us both simultaneously, even though I’m wayyyy slower. Humblingly, even at 36, I have less autonomy than I had as a child. Any movement requires assistance, every appointment needs to be scheduled with someone else, and it’s becoming increasingly difficult for my family to leave me alone because I choke on nothing.
The real blessing is in my father’s perspective. Instead of worrying about finances, or complaining about how much less time he gets at the gym (a huge basketball sacrifice), my dad tells me that he “is living his best life.” This doesn’t mean that our days are easy. On the contrary, we’re both stubborn, competitive, opinionated, and convinced that our individual way is best.
On one ridiculous occasion, my dad and I were arguing and I was having difficulty speaking. This was early in my diagnosis, prior to realizing I have pseudobulbar affect (PBA, which significantly impacts your control of your emotions… aka someone who never cried, now will randomly sob uncontrollably). Feeling trapped, I just kept going up and down the stair chair lift… My dad was trying to talk to me on the first floor so I went up to the second floor. He says ok, goes to the second floor to continue our conversation, I hit the button to go back down. Thankfully, we can laugh at the absurdity now. But the insanity is real!
Since I now primarily communicate by typing with my eyes through my Tobii Dynavox (which is amazingly helpful, but slow, prohibiting longer, detailed responses within the flow of conversation), I tend to email my family my long lists of suggestions for support. This could be understandably overwhelming, but not for my dad. He reads through, highlights, discusses my ideas, and refers back to them. Somehow he takes everything in stride.
We both love to shop, and my dad’s never been a minimalist: if one is good then five are better. Both my mom and my husband probably disagree, but I'm especially thankful for those skills now. We have many wheelchairs (giant motorized, light motorized, 3 slim options, big manual, shower, and beach); my dad is always willing to figure out how to store them or look for whatever will help me be more comfortable.
It might not be the way he had planned to spend his retirement (and certainly not how I had envisioned my thirties!), but his perspective is a continuous blessing to our family. With ALS, families need to have perseverance through hard conversations, purposefully choose joy every day, and be willing to adapt. I’m so thankful that my dad does each of these automatically. He is an absolute gift from my heavenly Father, and I’m SO thankful for him. I look forward to celebrating him on Father’s Day and for all the days to come.