How do parents and children experience joy beyond special needs at Christmas? Guest blogger Kathy Guzzo shares her journey to experiencing joy while celebrating Christmas with her adult daughter.
Experiencing Joy Beyond Special Needs
The holidays are a time for so many heartfelt events. From the excitement of the children as they write their letters to Santa, to the gatherings large and small of family and friends there seems to be laughter, and fun everywhere. Yet, for many families, like ours, there are times when the joy is dimmed by the reality and reminder that life isn’t all laughter and good times.
Physical Reminders of an Illness are Tough on a Mom
Every time our adult daughter, who’s had many complications from lupus and other chronic illnesses, comes home for a visit, especially during the holidays, reality hits. My mother’s heart wants to see the beautiful vibrant and athletic young girl with the thick long hair that I remember as a teenager. So when she walks in with her hair piece on, heavy makeup to cover the open ulcers on her face, long sleeves even in the heat of summer, because she’s so thin she’s always cold, and a sadness around her eyes my heart breaks a little. I’m sure part of my gut reaction is because she lives 500 miles away so I don’t see her very often. The other part is that as her mom, I just don’t want to see her like that.
I remember going out to for lunch after helping her move a couple years ago, and I got so frustrated with the people who would stare at her when they saw her. I knew it was really uncomfortable for her too. I wanted to tell them to quit staring, that she’s a fighter, that she’s honest, loyal, responsible, and loving, because I wanted them to see beyond the outward appearance.
Looking Beyond the Disease
Not long after that, when she came home for a visit, I realized I was acting like those strangers in the restaurant, looking at what the disease had done to her physically. This was a real jolt to me. I didn’t want to be the mom that looked on the surface. I never wanted her to doubt that she was loved unconditionally regardless of her appearance. Why? Because she was not the disease that had attacker her body. She was still the amazing young woman God had created to be my daughter and so much more.
From that point on whenever I’m going to see her or even talk with her on the phone, I ask God to give me the strength to go beyond than the disease, to see her with His eyes which go so much deeper than the surface. I can honestly say my heart is more at peace and our relationship has grown because I’m not constantly focusing on her illness. I’ve chosen not to always ask how she feels, if she’s been to the doctor recently, if she’s on new meds, if she’s eating or if she’s getting enough sleep. Instead we discuss the same type of topics I discuss with my kids that are healthy, and if she chooses to bring up her health we go from there.
In fact, I recently had a great time while visiting her. It wasn’t until I looked at some photos I took that I realized I hadn’t thought at all about her physical appearance the entire time I was with her. It was obvious by the photos that all the symptoms were still apparent, but I hadn’t noticed them. I was truly focused on enjoying my time with Andrea.
Joy Is a Choice
So as Christmas approaches I can’t wait for the time I’ll spend with my family laughing, eating lots of Christmas cookies, playing games and reminiscing. My heart will still ache each morning when Andrea comes downstairs extremely thin with a bandana on her head, because I hate that she has to deal with so much, but I know I’ll be able to focus on her, because she really is so much more than the diseases that have invaded her body. She is my daughter, and I’m choosing not to allow her illnesses to dim the joy that I experience this Christmas.
How Do You Experience Joy Beyond Special Needs?
Oops, I forgot to warn you that Kathy’s post carried a two tissue warning. Take a minute to grab some before leaving your comments about how you experience joy beyond special needs.
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