Warning Blasphemy coming... "Dear God, I've decided I'm done with the depression and the cystic fibrosis, I can't handle it any more, so you can have them back now, I am just done. Thanks"
I know everyone means well, and I really appreciate the concern, but please stop asking me if I'm o.k. because I'll just say yes. And truth is, I am drowning. I get out of bed and I take care of my husband and my girls, and that's it. AND THAT'S A LOT! I make sure they are fed, I make sure they have clean clothes (even if they are wrinkled). I make sure the girls have clean diapers and get their teeth brushed. I make sure all of Joyli's nebulizers, spacers, binki's, suringes, bottles, rings, nipples, spoons, g-tube extention, and supplies are all washed and sanitized every day. I make sure she gets her Albuterol, and CPT twice a day and Pulmozyme once daily. I hook her up to a machine every night to help her get more food. I clean up the vomit that happens several times because her tummy can't handle the g-tube. I make sure that we jump every time Joyli's Dr.'s say jump and they've trained me to ask how high. I make sure the endless paperwork for insurance is kept up on because who can afford $200,000 a year? I make sure that all prescriptions never run out, because that would be very bad.
Our living space is a disaster 95% of the time. I think I'm about a few months behind on laundry. My family is living on t.v dinners and it's a good day if I actually get a shower, brush my hair and get dressed. Don't judge me. You haven't been in my shoes, you haven't had the same experiences I've had in my life. I am doing the absolute BEST that I can! The depression in so bad. This CF is such an absolute HELL!! I HATE IT!!! I hate having to beg my parents to sit with my daughter in the hospital because I just can't handle it any more. What am I going to do when she's 10? Say "Sorry kid, you have to stay here in this nightmare for a few more weeks but I'm leaving because I can't handle it?" Joyli's been in the hospital so many times I've lost track. I counted up to her 7th stay in the hospital when she was 5 months old, but she's been in there so many times since then I've just been too busy and stressed to remember to count them all.
One of my favorite books in the whole world is a childrens book someone gave us on one of Joyli's stays at Primary's. It's called: "I knew you could" by Craig Dorfman
It's of course about a train and some of my favorite words from the book are these:
"You'll go through tunnels, surrounded by dark,
And you'll wish for a light or even a spark.
You might get scared or a little bit sad,
Wondering if maybe your track has gone bad.
So here's some advice to help ease your doubt:
The track you took in must also go out.
So steady yourself and just keep on going-
Before you know it, some light will be showing.
And then you'll be out, heading to a new place.
You'll be ready for the next tunnel you face.
Sometimes you'll look up and see planes in the sky,
And you'll think to yourself, 'I wish I could fly'
The cars on the roads will seem quick and free-
you'll feel stuck on your track and think, 'I wish that was me.'
But the plane might wish he could get out of the air,
Saying 'I wish I could travel like that train down there.'
The cars will watch as you speed right along,
And they'll say to each other,
'Look how fast and how strong!'
Don't worry about not being a care or a plane,
Just enjoy the trip you'll take as a train."
It is so dark right now. I wish that light would come soon.
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10 comments:
It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant
I read this and thought of you..I know you are just so overwhelmed. Try to take each day as it comes, and know that you are the foundation of your family and that together with your rock, Joe, and prayer and faith...you will be able to face tomorrow and the next day..I am here for you if you ever need to talk, or cry, or anything.
I am soooo sorry. I have actually thougt about you and prayed for you many times over the last year. Thanks for being friends on Facebook so I could see a glimpse into your lives. I am sooo sorry and thinking about you. If you ever do need a place to stay at Primary's, our aparmtent is not much but it is only about 5 minutes away. Thanks- Ashley (Drury) Swenson
Remember to take care of yourself. Treat the depression. If you are a mess then everything else goes to hell in a hand basket. But, you can do better! (with the drugs your body responds too) You are a child of God. He is merciful. Light is all around you, you just have to take off your rose colored glasses to see it. I know I have been there a ton this last year.
Much love,
Melissa
You know what I liked the very most about this post......how honest you were. LIFE SUCKS sometimes but yet we still try to put on a brave face and act like everything is good. It is ok to let the world know what it is actually like in YOUR world because until you've walked in your shoes no one can really understand. I'm so sorry for all you have to go through with your baby. IT ISN'T FAIR and I'm afraid that until we greet our Heavenly Father we'll never understand WHY ME. One of my twins was diagnosed with Type 1 diabetes last year and now my days are spent checking blood sugar levels, giving insulin shots, counting every carb she eats and worry, worry, worry. I know it isn't much compared to your life but I feel I can offer my honest sympathy and understanding because THIS ISN'T WHAT WE SIGNED UP FOR. Where are you guys living right now? I would love to get together with you can we could cry, complain and cry to each other. Take care.
I am so sorry! I bet this has been the longest year of your life. I wish I could offer some kind of helpful advice that would make it all better, but I can't. Frankly, I just never had to deal with what you deal with every day. I do think you should talk to your doctor about depression if you feel like it isn't going away. While I was reading your post this talk came to mind. I don't know if it is you or I that needs to hear it, but I thought I would share.
http://broadcast.lds.org/genconf/2005/apr/5/5_6_bednar_000_apr2005.mp3
Love you guys!
I would like to back-up my daughter Natalie's post, by saying i will come and help you. Please let me come, your mom was there for me when my son was born, it will be my way of paying it forward.
I too am grateful for you honesty. I feel that God needs you to be there. You are a daughter of God that perserveres and Will GO AND DO the things that God needs you too. This is a journey. Each of us have a different journey to PROVE that we can Endure. We as Friends will PRAY and LIFT you. Just tell us what you need. Learn to VOICE that need. Even God does that! Love you! wished I lived closer to help with that Laundry. I'm weird like that, I don't mind doing it! :D
Hi Regina. I am so sorry things have been so hard. I have had a little taste of depression, and it has been clear to me that you are suffering. I'm glad you seem to be doing better lately. Few people really understand this horrible illness. You are doing a great job with your family, even through it all. I had better start blogging so I know what is going on with people. :)
Wow. You are doing so great with all you have to deal with. I've had a taste of depression and know you have been suffereing. I'm glad you seem to be doing better. Thanks for allowing me to watch your kids once in a while. Few people truly understand what you are dealing with on both counts. I better start blogging so I know what is happening! :)
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