I've had four panic attacks in two days. It's a number of things...
Froggy's birthday for some reason is stressing me out. I have to clean my house, and it's like this overwhelming hurdle that I feel paralyzed to tackle. Just thinking about it makes me short of breath.
Two: I just received a letter from the State. I had applied for in-home support, so someone can help me take care of Froggy, do treatments, etc, so I can work. Our Pulmonologist has suggested we not put her in daycare or preschool. FD is in school full-time, so my part-time income keeps us afloat. We also receive some family support. However, as Froggy gets older and demands more, fights treatments and naps and just about everything, I just can't do it alone. We can't afford a nanny or babysitter, so I applied through a state program. The letter today approved us for one hour a week. That's right, one hour. I spent probably 30 hours doing the paperwork and spent an afternoon with a case manager who didn't know anything about CF or epilepsy. No one seems to understand that the 'maintenance' of CF equals hours and hours a day. Froggy, because she's a toddler will not do her vest/nebulizer by herself. So I sit there with her. Because she's so small, we spend hours a day pushing food, giving constant snacks and enzymes. Her seizures make sleeping difficult so it takes me an hour to get her to sleep for both nap and bedtime usually. That leaves little time for work or anything else. And forget time to myself. From 9-11 at night is the only time I have to veg, read, check emails, and do laundry.
Three: We have a doctor's appointment on Tuesday. It's just with Froggy's Pediatrician, but I always feel that appt. angst.
Four: We have a court hearing Wednesday morning for Disability. In my attempt to get some in-home help, so that I can work, we've decided to apply. Even one day a week of help would be huge. Last Oct. I sent in all the paperwork and we were denied. I appealed, and almost a year later, they've given us a court date and I have to prove that Froggy is disabled. The idea that I have to stand before a judge and make the argument that my active, incredible toddler is disabled, is killing me. It's the last thing I want to argue. I want to say, "She's fine, she's healthy, she's perfectly normal." But I also know that we need help. I can't physically care for her and work 25-30 hours a week, while dealing with all the insurance and pharmacy issues. I spent five hours on the phone this week for one medication, getting a new prescription, making sure the pharmacy received it (they didn't, calling, calling, calling.) There are some days where after putting Froggy down for a nap, I can't move. I just sit there, stunned by all the work I have to do each day. Honestly, I feel paralyzed. The more responsibility put on me, the more I want to crawl into a cave and hibernate.
Five: I really miss my family. It's tough being so far from home. It's hard not being able to call my mom and say, "Come over, I need a hug." My sis is coming Sept. 24, so I have that to look forward to, but FD has decided he will never live in Iowa, so that is another thing I really have to accept. I will never have my family near. And that is a tough pill to swallow. No matter how tough things get, there is no negotiation.
Six: I'm having a hard time dealing with the death of a little girl with CF. Her family just celebrated her 13th birthday without her. And with Froggy's birthday coming up, this really hits home. We are only given a certain number of birthdays and it's hard not to think of numbers, how many, how much time do we have. That marker of life, is a reminder that life is measured in years, in candles on a cake. How many, how many, how many?
Seven: I'm tired. Even with the two weekend vacations out of LA, I'm just tired. I haven't spent more than a few hours (at a time) away from Froggy since she was born. And with FD's busy class schedule, we've become stuck at the hip, and she's so attached to her Mama, it's hard even going to the store. She screams and cries at the door for me. So even when I do get a moment to myself at the grocery store, or to work, it's guilt-ridden and anxious.
I know my body is telling me to slow down. But I can't. What do I give up? Caring for my kiddo? Working for my boss? Cooking, cleaning, and seriously I'm lacking in both categories? What gives? Do you remember that game "Kerplunk" where you pour marbles on top of the sticks and each player takes the sticks out, hoping the marbles don't fall? That's how my life feels, a frantic game of marbles falling. And it's loud and chaotic and all I can do is sit there and watch it happen.
I fell asleep in my Abby Cadabby costume. But I took my wings off first.
My GREEN PRESENT I requested!
Thanks Grandma W.
Are you ready to party Hummingbird?
Hey, why is there a big gorilla at my birthday party?
The Bub and his gorgeously glowing Mama.
The Bee Man and his mama.
FD and the Frog watching the Birthday Gorilla.
Hummingbird's Mama and "J"
Hummingbird is thrilled, but still holding on tight to her daddy.
Peek a hoooo hooo hooo.
A present from the gorilla.
That's just wrong.
Froggy and the Bee Man climbing.
After the park, we walked to our humble abode.
It was her "present" to the Frog. And what a delicious present it was.
Enzymes before cake.
...And many more!!!
Hooray!
You're gonna share, right?
Froggy eating a froggy. She ate the legs first.
Froggy and Hummingbird
The Bee Man incognito
Happy Birthday Froggy!!!
Barack Obama surfing
