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.
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.
12 comments:
oh my...hugs to you. something tells me that you are going to get some help with your disability court date. if you can speak as well that day as you are here - i would be horrified if you are denied. hang in there super froggy mama you are making such an incredible impact with froggy. hugs hugs hugs!!!!!!!!!! jcn
Hi FM,
I am sorry you are going through all this. Being a mom is a selfless thing and being a CF mom is even more selfless. When Froggy is a senator someday she will have you to thank for keeping her so healthy and balanced.
I hope you get your much needed break very soon.
KHJ
I just wanted to let you know how much I truly admire you. When Froggy is my age, she is going to appreciate all that you sacrificed for her, just like I appreciate my mom. You are doing a fantastic job.
I feel for you. Birthdays are a tough one. I'm always reminded of Max's birth and all the trauma of lifeflight to the City, surgery, NICU recovery, all our fears with his CF diagnosis... It all just comes rushing back -- all those feelings. But then he laughs, says something funny and I'm reminded that he's doing fine -- that we're handling it.
Can't believe an hour a WEEK! You could maybe get one load of laundry done. Sigh! Hopefully someone from the CF boards can give you some suggestions. :)
I can relate to a certain extent about not getting things done. We're fortunate in that during the winter months, we do have my inlaws around to help once in awhile. My family is also far from us. We also have a good network of friends who I've contacted in a pinch if I need someone to watch Max if DH and I both have a conflict at the same time.
DH has been busy lately with work and a project, so Max has to settle for me during vesty and most of the evenings. Last week he asked his dad when he was going to be done, so he could PLAY with him again.
I wish I had some suggestions -- just know that you're not alone. That you're doing great with froggy, even though it doesn't seem that way at times.
My heart is breaking for you. I'm so glad that your sister is coming soon to be with you.
I'll be praying hard for you when you have your hearing.
Hugs to you, FM.
We met during Nadya's BBQ (my kids are Chase and Kira--Chase is almost 2 and Kira's 5 months old) and I saw your blog on one of the PH postings. While it's no comparison to what you are dealing with, I know how hard it is to have little kids in a city where you have no family (my family is overseas and Brian's is in Texas . . . and I'm actually the guilty party who has said that we will likely never live in Texas!). Please let me know if we can help in anyway. Brian's a stay-at-home dad so we have schedule flexibility and we'd be more than happy to lend a hand with errands, picking stuff up, cleaning, anything we can do.
Take care of yourself and give that adorable girl a big hug.
Melissa (mb_bonfiglio AT yahoo)
Vent on, vent on. I hear your cry mama. I also work part time, and my husband travels/works A Lot. It is so, so, so difficult. Ojaio and I are attached at the hip also, but I can tell she needs a break from me sometimes, and I could really use a break for myself. Now I know not to even bother with trying to get help through the state. I am planning on going back to school for my masters/credentials next semester, but I really don't know how I'm going to get through it....but have to do it. I hate whining, but it really is just not fair!
I totally know the "appointment feeling". I never sleep the night before, even for Ped. appointments. My family lives on the east coast, and I'm in Texas. I haven't seen them since last summer, and I haven't seen my sister in about 7 years so far. Now, with the cost of airfares, its just not going to happen.
I always tell myself not to think about the limitations. You have such strength to stand up in front of a judge and talk about them.
I nearly feel like I'm there with you.
My heart is breaking for you too - you need and deserve a break! Is there any way FD would consider moving to somewhere else in the midwest, so you would at least be within driving distance of your family? It's just so hard to do it alone. There are just some things that family can do for you that no one else can.
I had a dream last night that I showed up on your doorstep and took over for a few hours while you went off and vegged out.
I generally hate the feeling of waking up and realizing good dreams weren't reality, but I hated it even more this morning.
xoxoxoxoxoxo
FM,
I started writing a reply to your post (Johnny come lately, that's me!) and after about five paragraphs with no end in sight I realized I ought to just delete it all and tell you you're doing a good job. Go easy on yourself. I don't know how easy it will be or how things will turn out, but you're going to get through it.
[It may not be pretty and various government employees may come within inches of losing their lives, but you're doing the right thing;)]
The situation sucks. I'll be happy for you and Froggy both when you're on the other side.
You need help -- something has to give, and soon.
Here's to The Powers That Be seeing sense, and concluding that not being able to breathe and digest food with hours of daily treatment does indeed constitute a disability.
I wish I could be of some help.
monika
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