FRUSTRATION

Yes, I am back. And not better than ever, unfortunately. In fact, after this, many may wish that I just hadn't come back! I still haven't updated my blog with cute pictures or funny stories. No month updates or a week in the life of's. Half of the time, I don't want to blog. I don't want to write about all the junk going on right now or don't want to take the time. The other half of the time, I decided to try and catch up, but am unable to log in. Or update. Or post pictures. So I just get frustrated and give up. Sometimes I feel like either Satan or God doesn't want me to keep this blog going. I have seriously run into that many obstacles trying to keep it up. If only I knew who it was trying to make me quit.

My life is frustrating right now. There is no other way to say it. It may not be justified. It may not be to anyone else who looks at it from the outside. I may just be a big wimp. But the truth is, it is. It is to me. I am drained. Physically. Emotionally. Financially. Spiritually. DRAINED. I am surviving. I am blessed. I feel EXTREMELY guilty complaining. I am frustrated. I don't know what to do. I don't know what not to do. I make decisions. I avoid decisions. I study. I second guess. I try to be educated. I pray. I doubt. I am frustrated.

Part of my frustration is with the normal things in life. Leah is emotional. Cranky. Pushing buttons. Kate is asserting her desire to be a two year old. Laundry always needs to be done. The house needs to be cleaned. I want to blog and make the girls memory books. I need to get Christmas shopping done. I need to get the kids pictures made. I need to cook more and eat out less. I need to lose weight and exercise. I need to see the doctor and dentist. I need to spend more time with Daddy-O. I need to spend more time with Leah. I need to spend more time with friends and family. I need to spend more time alone. I need to spend more time with GOD.

Then there is this whole other universe of frustration that consumes my life. This universe is spinning so fast and feels like it is so out of control. I'm a stranger here. A foreigner. I feel like I don't speak it's language or know it's ways. I feel like I don't belong, but yet am being called to lead it.

I am constantly baffled by how frustrating life with Kate can be. I feel like so much of it is cyclical; her health, my emotions. I am constantly bouncing back and forth.
- "She's not going to be around anyone" <-----> "Who cares who she's around, she'll get sick anyway"
-"We have to figure out this, that and the other"<----->"You couldn't pay me to go near a medical facility"
-"This is what it is"<----->"They've got to be missing something"

I could go on and on, but I'm sure you get the drift. I go to this doctor and find out this. I go to that doctor and find out that. Every time we go in for something, they find something different and seemingly unrelated. I am so frustrated.

We spend hundreds of dollars a month on doctor's visits, hospital bills and medicines, just to overdraft the account the next month on the exact same things. Every month I think this month, this is going to be the month that's different, then boom. I think this time, this is going to be the medicine combination that works, then boom. I think this doctor, this doctor is going to have THE answers, then boom. It's like Groundhog Day and it's frustrating.

Kate goes everywhere with us. We don't take her to nursery or Bible class. She doesn't go to child care or MDO. She is stuck to my hip. Every time we "try" we get to pay the consequences. There is no break from it. If she's well, I'm afraid to do anything with her out of fear that she will get sick. If she sick, we don't get to do anything anyway. I am constantly watching. Scouting to see if there is anyone coughing or sick around her. Watching to make sure she doesn't touch too much. Watching that she doesn't put her hands in her mouth. There is no down time. No break. I am always on guard. I feel like we can't schedule anything in advance. What if she gets sick that week. What if we need to get to the doctor. What if. It's frustrating.

I get advice from everybody I know. Most of it very good advice. I'm told, "Don't worry", "Trust the doctors", "She need this or that", "You need to see Dr. X, Y and Z", "I would this", "I wouldn't that" "They should this" or "They shouldn't that". I don't know what she needs. I don't know what to do. I want advice. But nobody knows what it's like. It's always different. I believe God speaks to us through others at times. I also believe Satan can use others to bring us down. How do I know which is which. I am frustrated.

I take her to the doctors and can't get them to listen to me. I can't always get in to see the same doctor. They all suggest different things. Some shrug off things. Some plan for drastic things. I either get the "This isn't relevant" look or the "why haven't you gotten this checked earlier" attitude when I ask questions. How am I supposed to know who to agree with. When do I push for more. When do I pull back the reigns. I am frustrated.

I use my gut. I use my education. I try my best to educate myself when I lack. I pray. I feel like I'm not praying "right" because sometimes I pray for answers instead of cures. I worry. I stress. I snap at my kids. At my husband. At my friends and family. At strangers. I try my hardest to let it go. I lay at the base of the cross. And then I pick it up again. And then I put it back down. I bet HE is frustrated!

I feel like I need to have more faith. Let God handle it. But what does that look like. I have personally known people who have taken this approach far enough that they lost a child to cancer, refusing treatment. I don't want to be that ignorant. Then I look at my grandmother who visited every doctor she could until she found one that "agreed" with her that she needed to be on oxygen. She has spent everyday of her life on oxygen since. I don't want to be like that. Finding balance is frustrating. Do I take her in when she's sick? They do the same things every single time. Do I take her in when she's healthy? Then she'll inevitably pick something up while we are there.

I feel like I'm going crazy. Like I have major issues. I feel like a nut requesting that the doctors do something. I feel like a weirdo when I ask at every visit if we need to see this specialist or the other. I feel like I'm a nuisance to the doctors, the nurses, the staff. I feel like the boy who cried wolf. I feel like I am constantly having to explain myself or justify myself. I don't want drama. I don't want attention. Often when someone asks how Kate's doing I respond "just fine" because I don't want to get into it all. I feel like people think I'm crazy. Like they talk behind my back. I know how often I hear, "Well, she looks healthy to me" or "she looks too good to feel bad" while I'm out and about. I can't help but wonder what people do think. I know it doesn't matter. Or shouldn't. I know a lot of this is my own insecurities. That is frustrating.

On the other hand, I have a daughter who is sick. I constantly am at doctor's appointments and hospitals. I shuttle back and forth to x-rays and pharmacies. I keep detailed records of every symptom, medication, office visit and test. I hope that someday someone will take all of these pieces and solve the puzzle. I give medicines and breathing treatments. I stay up all night. I deal with insurances and nurses. I am constantly on guard trying to decide what is "safe' for Kate and what is not. I constantly beat myself up for missing "clues". I wonder every single time she gets sick which choice I could have made differently to keep her well. I know that I shouldn't beat myself up over it. I know that I'm trying my best. I know that I'm not perfect. It's frustrating.

I worry about the future. About the effect this all has on Leah. The effect it has on my marriage. On our finances. I worry about whether or not the medicines will cause problems for Kate in the future. If the surgeries and procedures she has will effect her life. I wonder how much she will miss out on because of my fear. Or her health. I wonder if I could see the future Kate, what she would have wanted me to do. There is so much pressure. So much stress. So much frustration.

Selfishly, I don't want to change our lifestyle to adjust to constant medical bills. I don't want to have rules for Leah. I want her (and Kate) to be able to play on playgrounds. At the mall. To go to children's museums. To drink out of water fountains. To have play dates. I don't want to freak out at Leah because she shared lip gloss with her friend. I want them to be kids.

All that I want is to have a healthy baby. A happy and healthy family. All that I want is for her to have the absolute best chance at the best life possible. I want to know that I am doing what is best for her. Not too much, not too little, but just what is best. I want her to live a normal life. I want US to live a normal life.