Cups

Usually I sit down and do blog posts only when I have the time (which is obviously not all that often)... but this time I made the time, because I feel like I need to talk my way through what I've been feeling lately.

I always felt like I had a good strong hold on my situation when London was first diagnosed, and for the past 5 years- I knew when she was sick before she showed signs, I usually knew when to take her to the doctor and when to ride it out, I felt in control of her overall well-being. I handled things, I juggled things. Lately, though, I've felt like everything is completely up in the air. I feel like something terrible is spiraling toward me and I'm completely powerless to stop it- like being thrown a football and being totally unable to make the catch.

London has not been herself for several weeks now. She's been fussy, sleepy but restless, congested, and having trouble breathing... after treating a minor ear infection, she still wasn't perking up so I took her back to the pediatrician. He spoke to me at length about the high possibility of a sinus infection, prescribed a stronger antibiotic, then talked about other things that might be the cause of her symptoms- like enlarged adnoids. We discussed London's application for Make-A-Wish and why he hadn't sent it in after recieving it weeks prior. According to how things were worded on the application, he wasn't sure if she was 'sick' enough to qualify at that point. I didn't (don't!) ever want to look like someone who is just trying to exploit my daughter's disabilities to get free things, so I wasn't offended or upset over his hesitation. In fact, it was one of those things that I hoped he'd look at and, chuckling, tell me that she didn't qualify because she'd be with us forever. In the end, though, after more conversation, he signed off on it and it was faxed back to Make-A-Wish as I left his office. He also gave me a referral to see and ENT (ear, nose, throat) specialist. Before going home, I had to stop at the pharmacy to pick up her prescritption and after everything, and hearing that yes, her condition truly is progressive (meanign is worsens in severity over time), I was really feeling like I couldn't find good news anywhere at this point. It took every last ounce of control I had just to keep my emotions in check as I walked out to the car holding yet another medication.

And then it happened. About 30 minutes after leaving my doctor's office, my phone rang. I had the number saved in my phone so I knew exactly who was calling. It was Frank with Make-A-Wish. I assumed he was going to tell me that although the doctor signed off on things, they'd decided that London wouldn't qualify for a Wish, or at the very most he would let me know they'd received it and would look it over. I wasn't expecting to hear him say, "Danielle, we got London's application back from her doctor and we're all ready to go for her wish." After giving him some more information he needed, I loaded the kids in to the car, tossed that medication into the passenger seat, and then cried in the Target parking lot. In the midst of her being sick, and trying to figure out how to help her, along with juggling everything else that comes along with being a mother, that moment was like a small break in a dark cloudy sky... 

I have always been very realistic about London's future. From the day I found out I was pregnant with London, I knew two things: 1. it was a girl, and 2. something was wrong. Maybe I've touched on this in previous posts, I can't remember, so I apologize if I'm repeating myself... I never really voiced my concerns, because everything checked out beautifully at my prenatal appointments. So how crazy would I have sounded if I'd started spouting off about my 'feelings' when there were absolutely no red flags being raised during any test or uptrasound??? Anyway, I feel that because of this, I very easily accepted her diagnosis. I was never in denial. But I do feel like family and friends, as much as they love London and me and want to help, DO have a problem thinking realsitcally about things...

Let me quickly tell you a little thing about my sweet son- he's four years old now and I adore him! But he does this thing that drives me absolutely bonkers- he hands me things that he could just as easily or easier deal with himself... instead of just putting his cup down on the table, he wants to always hand it to me. Instead of just throwing away his candy wrapper, he hands it to me. He often gets frustrated when I refuse his offer. I'm constantly dealing with his freakin' cups!

SO, that being said, let me try to explain how I've been feeling in regards to being a person who is very realistic about London's future, but often feeling like I'm the only one in our support system who IS that way... I have a cup of fear, heartbreak, frustration, quesions, and mourning. It's full. But I can handle it. It's mine and I know how to deal with it without it spilling over. But I feel like everyone is handing me their own fetching cups!! I feel like I'm carrying the burden of everyone else's fear for London's future. I get it, it's not a fun subject of conversation- the fact that London might not be with us for a long lifetime. Trust me, if anyone wants her forever, it's me. She's mine. She's supposed to bury me, not the other way around. But while everyone else can hide behind the curtain of denial, whether conscious or otherwise, I'm the one dealing with the reality of her condition. And I'm seriously struggling with it. I feel like not only can I not catch that football of fear spiraling toward me, but that everyone around me doesn't even SEE the damn ball.

We've all pondered what we'd want when faced with the question: Would you want to know the exact date of your death or not? Well, I'm NOT saying that I want to know when London will pass away- I certainly don't want to put a LIMIT on her... but I want to be informed and educated on her prognosis and what to expect with her condition. But I feel like nobody wants to tell me anything. I feel alone. Carrying cups.

I recently attended the viewing of a boy who passed away way too soon. An amazing boy who was dealt more than his fair share of obstacles in life. I stood in that line, getting ever closer to his mother standing bravely by his casket, and the closer I got, the less I could breath. My chest tightened, my whole body started shaking... I thought I was going to have to make a hasty exit because I literally was barely holding myself together. I couldn't help but think about how on earth I would get through it if it was my child... I felt raw and unprepared for anything truly bad to happen. I hated the feeling...

I'm not trying to predict anything about London's future, I'm sure there are some of you out there thinking I'm morbid for even entertaing the idea of London's passing- but I've read and learned about her condition, I've paid attention to her every move, her every sniffle and cough, and I've listened to my gut feelings... I'm going off of the information I've gleaned over the past six years of London's life...

I'm a firm believer in things happening how the are supposed to happen... it seems like, for my family, some things fall together and other things fall apart in a way that gets us by every time. We might not see it right away, we might be angry or frustrated because things aren't working out the way we planned, but in the end, they DO work out... But why not prepare yourself anyway???

Am I the only one who feels like that??