I guess I can never say again that parenting is a thankless and under-appreciated job.
At the first Rare Diseases Gala in September, I received an award for just that – being a Mom! Honestly, I felt a little embarrassed because I thought, “What did I do to receive such an amazing award?” But then I thought about it and I realized: I opened my big, fat mouth, and that’s how I got the award!!!
In the 14 years since Derek was born, I talked incessantly to anyone who would listen about how Derek was diagnosed with Joubert’s syndrome, and how it has impacted his life and ours. At times I “over-shared” and probably said too much about our life. There were times when I embarrassed myself, and caused people to “slink” away from me mid-conversation because I made them uncomfortable talking about something related to people having special needs; I think at many points I was inappropriate. I’m sure most people were sick of hearing about it, but I didn’t care; Derek and Joubert’s syndrome was our entire life and it overshadowed everything; so it was therapy for me to talk about it and hopefully connect with others experiencing similar things.
I think I helped educate people about rare diseases and syndromes and special needs….probably alienating myself from people with “typical” kids, but again….I didn’t care; it was all I could think about. And dammit…they were lucky not to have to worry about all the things we were plagued with, so they were going to hear about it whether they wanted to or not….it was my way of punishing them for having such an easy life!!!! And just imagine all the topics I was able to cover and obsess over once we adopted our other two little boys!!! The floodgates opened and I was able to share with everyone about the struggles of babies born with drug addictions and Reactive Attachment Disorder! I think at one point, I should have just made a sandwich board to wear around town so that I could save my voice for more important things, like auditioning for American Idol (did I forget to mention that I can sing?), but who has time for that?? And hey look, my plan to win an award worked: I helped spread the word of rare diseases/syndromes and challenges involved in having a family member/s with special needs; and because of my big mouth, I earned an award. See, it helps that I consider myself my boys’ Publicist. Who cares if I’m “self appointed” and I’m sure my husband, and boys would rather cut their own ears off, as opposed to listening to me, but guess what? It works both ways, I rather fantasize about cutting off my own ears than hearing about Pokemon, farting, and things the boys’ friends said/did at school.
So now that I think about it, I should stop being so humble about being “Just a Mom”; I need to be more confident and cocky. In fact, I think I deserve more awards. Let me count all the ways I deserve awards: First, I care for 3 boys with special needs…BAM, there’s an award; I work full time as a Social Worker in a Nursing home…bam, another award; I listen to my sons re-tell the plot of Looney toons cartoons and Good Luck Charlie over and over again, and try to seem interested…bam..award; I constantly have piles of laundry that include several pairs of boys “tighty whiteys” laced with skid marks….bam; I am the only one that doesn’t pee all over the toilet, and yet, I’m the one that cleans it…bam; I still exercise, put make up on and try to look nice (and that aint easy!!)….bam; I am 44 and I still do what my mom says…bam; my husband is still my best friend and the person I want to spend my time with, and he makes me laugh…BAM…award for both of us! I make dinner for my family…bam; I can sometimes answer voicemail, email and maybe log on to Facebook once in a while; it’s enough to let people know I’m alive…bam..award; I walk my dog…ok…and kiss her on the mouth…I can’t help it…..bam; everyday I re-live Groundhog day over and over …DOUBLE bam, I do what I can to help friends in need…bam.
Ahhh…. I feel so much better now that I’ve bragged about how great I am! I am already visualizing how I need a new cabinet…or better yet, I need to hire someone to build a hand-made custom cabinet to house all my awards. And when people come to the house, I will show them all my awards and brag about how wonderful I am. I won’t share pictures of my kids or tell their stories anymore…..it’ll just be “All about me” now…life is short…I have a lot of talking to do. And come to think of it…now that I’ll have a custom made cabinet; I’m going to need new furniture too. In fact, I think I deserve the services of an interior designer to come in and re-do my house…I’ve earned it! And probably since my house will be decorated so nice, I should hold a party to celebrate how wonderful I am…..because dammit I am and I deserve a party!