Wow, I really don't write as much as I used to. Looking back over my blog I had about a 1000 visitors a day looking for updates to Jude's situation. I am honored so many people followed his story and his life. I guess without him here there is a bit of emptiness I feel in writing but it can still be therapeutic.
So today's topic is one that may be a bit controversial or not, we will see. Let's talk about celebratory functions in life such as birthday parties, weddings, and showers. Today on one of the special needs groups I am still a part of (I stay to help others) a mom was upset because her sister-in-law was currently not on speaking terms with her. They weren't on speaking terms because the girl in my group failed to attend her nephew's birthday party. She turned down the party because with outside temperatures soaring a stroke survivor can have a hard time regulating body temps. She put her son's situation before the birthday party. So let's break this down in a realistic manner on all sides. The sister-in-law was probably just disappointed and failed to express her feelings in a positive manner. She also probably didn't fully understand the reason the family didn't show to the party, but it really doesn't matter........to be blunt. It's okay to be disappointed when a family member doesn't show to a party, wedding, or shower. I have been there, you have been there, we have ALL been there. However, under no circumstances does anyone owe you an appearance. This is something you really learn when you have a special needs child and it was a lesson I needed to learn.
I always made sure my kiddo's had nice birthday parties and of course I would be disappointed if I didn't see family, more so with Jude because we knew it could be his last. However, people have lives and they have situations that come up. I can tell you flat out I don't like driving anymore especially long distances, it causes high anxiety for me. By the time I reach your event I will resemble some sort of wonky eyed Gremlin. This is an after effect of Jude's death. I had an accident years ago with Emily that was horrific and it caused driving anxiety, this went away until Jude passed. Luckily most of my friends and family fully understand this situation and my husband is extremely patient with it.
Families that have special needs children have a lot of daily issues that prevent them from going many places. A lot of times the family just doesn't want to go, they're tired for Christ's sakes. I lost a friend when I was with Jude partially because I didn't attend a wedding. Granted this family was very close to me but it was a long drive, I would miss time with Jude or family, and I just decided not to go. Mike was fantastic about not letting people who were upset bother him. He would use my grandmother's line, "they can get glad in their mad pants." As I went through Jude's situation I had to admit sometimes people just don't WANT to come to your hosted party, shower, or wedding and that's okay. I became comfortable with the fact people needed to put themselves and their immediate family first a lot of time.
For us, Jude didn't travel well and had a vast amount of equipment. Sometimes we had nursing who could watch Jude at night but the vast majority of his life he didn't have that. Having someone watch Jude other than his nurses was a lot to ask of someone. So sometimes prior to getting upset maybe we just need to step back and realize that people have lives and other things going on. It's certainly not worth not speaking to someone.
Disappointment is also a part of life and it's okay for kids to learn that not everything always goes as planned. Sometimes people don't show, sometimes things happen to prevent you from attending, and sometimes a child their age is just too sick to travel, or even have a birthday party like your child can have! Sometimes I wonder if children learn this lesson at a young age they won't terminate conversations with family members because of party disappointment as adults.
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