As we start on week 4....

Well, we're still here. In this small room. In this hospital. 100 miles and 2 hours away from home. We are starting on week 4. And today is a crummy day. Lezly sounds and feels more congested. She's throwing up and blowing her nose. She's running fever. She's sleeping. She's not eating as well. And I too am feeling quite cruddy. I have a sore throat. A headache. Fever. I'm tired. Oh so very tired. And we are so ready to go home.

Home. 100 miles away. 2 hours away. Home. Yes we are so ready to go home. But we're here until we're good enough to go home. No one understands what we go through here. Everyone tells me to think positive thoughts.

Positive thoughts. Hmm. Well...I'm positive that my baby is dying from this ugly disease. I'm positive that we've been in this hospital for almost 4 weeks. I'm positive that Lezly and I are alone here. I'm positive that friends and family are not always there for us. I'm positive that I hate CF. I'm positive that I'm tired. How are these for positives?

Oh and one more positive...I'm positive we're starting on week 4 in this small room. In this hospital. 100 miles and 2 hours away from home.

Friends.....

Okay so we've been in the hospital for almost a week and I always learn alot about people while we're here...the old and young. So, I've been doing some thinking these past few days about "friends" and what they mean. But two questions keep coming to my mind over and over: WHY DO YOU WANT TO BE MY FRIEND? AND WHAT DO I MEAN TO YOU?



I'm in a place in my life where I NEED my friends. Not acquaintances, not someone who knows my name, not someone who's heard of me before...but I NEED TRUE friends. I NEED friends who care about me and what's going on in my life. I NEED friends who will encourage me, pray for me, love me. I NEED friends who will be by my side while I grieve for my son or while I sit at the hospital with my daughter. I NEED friends who will HELP me find my joy when I seem to have lost it. I NEED friends who will rejoice with me when something good happens and cry with me when the bad happens. I NEED friends who have my back through the good times and the bad.



Now let me tell you what I DO NOT NEED! I DO NOT NEED "friends" who ignore me. I DO NOT NEED "friends" who are jealous when good things come my way. I DO NOT NEED "friends" who will not stand beside me when I am scared. I DO NOT NEED "friends" who discourage me and bring me down. I DO NOT NEED "friends" who look at me with disdain...or who roll their eyes when I'm having a rough day. I DO NOT NEED "friends" who think of my "friendship" as just a name and number on their facebook page. No, these are NOT the kind of "friends" that I NEED.



And speaking of facebook, seriously why HIDE "friends"? Why not just delete? Is it because you don't want your "friends" list number to go down? We're adults...no longer in high school. This is not a popularity contest. Being a name on a "friends" list....that's NOT what it's all about. Do you ever have a NEED for a TRUE friend? Do you go to your "friends" list to find that friend or do you already know who you can count on...who will be there for you? Honestly, do you KNOW all the "friends" on your list? Do you KNOW their struggles, their fears, their dreams, their life? Do you even CARE about that person on your "friends" list?



So this is my thing.....I want to be there for my friends when they need me. I want to encourage you, pray for you, make you smile, help you forget about your heartaches even if it's just for a couple of hours. I want to stand WITH you, stand up FOR you, and HELP you stand when you haven't the strength. I want to KNOW your fears, your dreams, your hurts, your triumphs. I want to be a TRUE friend! Do you?



I WANT TRUE FRIENDS! I WANT REAL FRIENDS! CAN YOU BE THAT TO ME? BECAUSE IF YOU'RE NOT WILLING TO BE THAT FOR ME, THEN IT'S TIME TO SAY BYE-BYE. IT'S YOUR CHOICE. GUESS WE'LL SEE......

3rd time.....

Well here we are.....in the hospital.....again. This makes the 3rd time this year. I remember a time when it was 5 yrs or so in between hospital stays. What has happened? Where have I gone wrong? Is it even my fault? I don't know. Right now all I can think about is....this makes the 3rd time this year. Makes me more sad. Makes me more scared. Makes me more worried. And now the port is being mentioned again. I know it will be better and easier. But it makes me think she may be getting worse...and I don't wanna go there. I'm not ready for that. Not ready at all. I'll never be ready for that. We need a cure!!! Not only for my child but for all the children. All the moms and dads. All the brothers and sisters. Yes we need the cure!!! Because we're losing our children to this awful disease every day. We're losing our moms, dads, brothers, sisters, cousins, friends. And Lez and I are here....in the hospital....again....for the 3rd time this year. =(

It's Sunday...

It's Sunday. The hardest day of the week for me. Sunday's are for family, friends and God. My Sunday's always were with my children. Regardless of where we were...we were together. Watching football, going to church, a family picnic or a drive in the woods. Always together. And now? It's usually just Lezly and I here at home. No church. No family picnics or drives through the woods. We watch football here at home. Just the two of us. Lucas isn't here to watch football with us. And he'll never be again. Linsy lives 3 hrs away. Wade works. It's so quiet here. I wish Lucas was here. I miss him so much....especially on Sundays. God help me....I want my son! I wish Heaven had a phone so I could just hear his voice. Or if Heaven had a stairway, I'd go see him and get one of his hugs. He hugged so good. He hugged with all his might. Tight. I miss his hugs. I miss his voice. I miss his laugh. I miss his smell. I miss my son. It's Sunday. The hardest day of the week for me. ='(

I know....yes, I know.....

Don't you just love it when you're struggling and someone says "God won't put more on you than you can bear"? Yeah...I don't. I mean really? What else are you gonna do? He's God. You can't just throw your hands up and tell God that you quit. No, you just keep taking it and taking it and taking it...because you have no choice but TO take it! Because He's God and He's in control. Regardless.

Sometimes it would be so nice if when asked how I am doing and I say "I'm okay" to have someone say "no you're not okay...talk to me". And then no matter what I replied back with, there would be no patronizing, pacifying, or judging. There would be no "don't be silly" or "you shouldn't feel that way". There would be something like "I'm sorry. I love you. Let me try to make you smile". Yeah that would be nice. But I don't get that often. I get the "God won't put more on you than you can bear". That seems to be everyone's answer to everything! Or these "You're so blessed" "you have so much to be thankful for". Yes, these are the remarks I get. I know I'm blessed. I know I have so much to be thankful for. Thank you. Sometimes I've gotten "well, have you prayed about it?". Makes me want to say "Dang, no. Wish I would have thought about that first!!" *said with sarcasm*

Oh well....I'll deal. I always do. Because I know...yes, I know....that supposedly God won't put more on me than I can bear. *sigh* =(

Another dr visit, another possible hospital stay...

I don't know what it's like to take my child to the doctor without having to pack enough clothes for a 2 week stay. People really cannot understand that unless they've been there. Our CF doctor is 100 miles/2 hours away...as is the hospital. So when we have a dr visit, we can't plan on a "normal" visit and go shopping and have a time of fun afterward. We pack our clothes for a 2 week stay. We are in limbo until we leave the dr's office. We don't plan on shopping or having fun until after we hear that no hospital stay is needed. For 2-3 days before the appt, I am doing laundry making sure we have enough clothes for 2 weeks. We have to pack books, laptops, games, movies, ipods. We have to LIVE in the hospital 100 miles away from our home for at least 2 weeks....sometimes longer. Not only do I, as a mom, have to make sure my things are packed but also Lezly's things are packed. I have to make sure my husband has enough meals for the 2 weeks I'm away. I have to make sure the animals are taken care of. I have to make sure the house is clean and taken care of. I have to make sure the bills are taken care of. I have to make sure I have money for my meals while I'm at the hospital with Lezly...but I also have to make sure my husband has money for gas to get to and from work. The month of the dr visit, we can't make plans for that entire month until we know whether a hospital stay is needed. No, I don't know what it's like to take my child to the doctor for a "normal" visit. Nothing about our LIFE is "normal"...but that's okay. I'm not sure I could handle "normal"... So, now I have 4 days to get it all together. To do laundry. To pack our things. To prepare my house. To prepare myself for another possible hospital stay. *SIGH*