As I sit here, at nearly midnight, with Kannon while he watches Curious 'Borge' (curse those late naps!!), I am thinking a lot about one particular reason I started this blog. It's not all about fundraising... I've said before that this blog is a place where I want to be honest about what it's like being a parent of a child with severe disabilities.
So here's a little honesty:
I've had a hard time the past month or two trying to deal with London's constant fussing and whining (ok, so it's been the last 4 1/2 years, but especially the last month or two). All she wants is to be held all day, every day, and I can't ever get anything else done. It seems as though the second I put her down, she starts with the whining. Not only is it frustrating to not be able to even do a load of laundry or reload the dishwasher without having to stop and calm her down, but just listening to the whining itself, regardless of if I'm doing anything, is completely draining. I have the shortest fuse ever, and I get frustrated so easily- it's something I'm continually trying to overcome- and sometimes I feel like I just can't do it anymore... I feel inadequate because I can't 'fix' what's wrong with her, I feel lazy because I can't get all the household work done, I feel bad because I rarely get around to making an actual dinner and we end up eating unhealthy food, and most of all, I feel like I'm not cut out for raising a child like London. I feel like she deserves someone so much better than I can be.
During a camping trip with my parents and some of their friends last week, one of the husbands in the group called me over, patted the bench next to him, and said he needed to tell me something. I figured he was drunk, and honestly, I was waiting for him to tell me some lame joke or something haha! Instead, I was surprised when he asked me, while looking at my mom holding London across from us, if I ever asked, "Why me?". I told him that I had never asked "Why ME?" but rather, that I asked, "Why HER?". Why London? Why does she have to bear this burden? An innocent little potato bug like her??? He offered some words of comfort... he reminded me that she's a blessing to me, and I to her. I can agree with the former; the latter, however, is not as easy to convince myself of, especially lately.
I'm not a religious person, but I do consider myself to be spiritual on many levels. I may not believe in what you believe, and I don't attend church, but I'm strong in my faith; a faith that I have acquired through many things, but through London most of all. I've always told myself, in regards to London, that God doesn't make mistakes; that London was sent to me just the way she is because that's just how it was supposed to happen. Maybe there's a reason, maybe not. But it wasn't a mistake on God's part. Having that belief, however, doesn't suddenly take away my stress or desperation. I can only use it as a reminder that God won't just give me patience, he'll give me the OPPORTUNITY to be patient.
I was meandering around online today and came across one of my favorite quotes from one of my favorite guilty pleasure movies, Rocky...
Life truly will knock you down; nobody can escape that fact. I just sometimes feel like London got suckerpunched by life. And sometimes it DOES bring me down and I don't want to get back up. Sometimes I want to lay in the fetal position and pour my frustrations out through my tears. Can I really handle this role I've been cast into?
Yes. Yes I can. Eventually, I will get up. I will fight on.
But before I do, can I please just lay here for a few minutes, in the fetal position, crying??
It's hard for me to admit all of this, especially to those I'm close to, as odd as that sounds. But my hope is that by talking openly about feelings like this will enlighten people who have no connection to a person with special needs, and maybe it will empower those who do have those connections, knowing that feelings like this are nothing to be ashamed of. I've been ashamed to admit weakness when it comes to caring for London for the last 4 1/2 years and I'm doing my best to overcome that...
Lots of love, readers.