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*

My story....

I was born February 1, 1966. A second child for my parents. They wanted a boy but got me instead. That, I guess, was the start of the disappointment I always felt they had with me. Anyway.....

I had a fairly good childhood...my mom was a stay-at-home-mom and my dad was a very hard worker. He was in construction and even had his own company for awhile...but he was also a drinker. I remember many fun times with my family but when I really think of my childhood 3 memories come to mind:

1. my dad coming home drunk on Christmas eve and throwing our tree and presents out in the yard.

2. my dad leaving my sister and I at a gas station when I was about 3 because he was drunk and forgot we were with him.

3. never getting birthday presents for myself...when it was my birthday my sister also got presents.

Maybe these memories explain why I have a difficult time trusting people, letting others get close to me or feeling some jealousy of my sister. I really don't know. I can only speculate. Now let's fast-forward to my teenage years. My dad decided it was time to move to Lake Tawakoni....we were living in Mesquite, Texas at the time. I was in the 4th grade at the time and moving was something I didn't want to do...but living by a lake would be neat so we moved. I didn't like my school and had no friends and I started having health issues...stomach aches and problems. My parents and sister didn't believe me, they just thought I didn't want to go to school. After about 2 weeks of stomach aches, slight fever, and being lethargic they decided it was time to see a dr. He diagnosed me as having a blocked bowel which is a serious thing for a 4th grader. My family, however, thought I must have done this to myself and really didn't "baby" me at all. Let's now go to 7th grade....Dad decided to move again. This time to Oklahoma, his home. He promised my sister & I we could have a horse if we agreed to this move. This was in the summer of '78. We built us a new home and made new friends. He quit drinking and life was good. In high school, I had many friends and boyfriends. I met Wade in '82 and at the time he was dating my sister. His younger brother and I would tag along on their dates. LOL. One night we were at the drive-in and my sister and I decided to switch seats while the guys were gone for popcorn to see if they would notice. They did and so we decided we would stay that way the rest of the date...just for fun. And so that begins the story of Wade and I. We were together every day after that night and we decided to get married. My parents, I guess, thought we were "doing the thing" and so they made us get married before I even graduated high school. I had to wear my grandmother's dress (which wasn't white) and my mother and sister baked us a cake. Our wedding cost $45. Altho I was a virgin on my wedding night, the circumstances of the wedding being so quick and all made the tongues wag and my reputation was pretty shot by then. I finished school and we became pregnant. We were so excited!!! I bought my first maternity outfit on a Friday and the following Monday I went into labor...2 months too early!!! Lucas Wade Hodge was born in the early morning of December 31, 1984...he wasn't due until Feb 27, 1985. He died several times before they could stablize him and off to Ft Smith they took him. Wade went with him and I stayed in Talihina Hospital where I had given birth. He weighed 3lbs 9oz. His head would easily fit in the palm of your hand with his legs being on your mid forearm. He was tiny...cabbage patch doll clothes were too big for him. We didn't get to hold him until he was a month old...a milestone considering they told us he wouldn't make it through the night or the week. When we finally brought him home, he weighed 5lbs and came home on a monitor. That thing would scare me every time it would go off. As he got older, he wasn't growing properly and by the time he was 9 months old, he only weighed 9lbs and by that time he was on oxygen full time. We finally got referred to a specialist and found out that he had Cystic Fibrosis. About a couple of months later, he started having seizures...full grand mal seizures. They put him on heavy medication and so off we go on yet another struggle with our son, our firstborn. The meds gave him nightmares and for a long time it was a hard fought battle but it was finally under control. Again they told us he wouldn't make it past 5 yrs, 12 at the most. We did all we could to make sure he had a "normal" happy life and we fought for every milestone of his life. When he was 3, we gave birth to a 8lb girl...Linsy. Linsy helped us with Luc, teaching him how to talk and just basically being a 2nd mama to him. I know that was alot on her but she loved helping and loved that we were allowing her to help. Thankfully Linsy doesn't have CF...but everytime she got sick or had a cough, I worried because I didn't know how to take care of a "healthy" child. Lezly came along in '90...6lbs. Another little baby that Linsy could help "mother". LOL....I seriously don't know how I would have survived without Linsy's help. She kept me sane. Unfortunately we found out that Lez had CF and so another hard fighting battle had begun. The kids did great for awhile, no hospital stays in 5 yrs or so. Then ever so slowly the descent began. Hospital stays more frequent and longer. Instead of only staying 10 days it became 2 weeks, 4 weeks or even 6 weeks. Every time they went in, we worried if they would come out alive. Every stay damaging their lungs even more. And every stay, Luc's seizures became worse because of the antibiotics he was having to be on. The only way they could prevent the seizures were to give him mega doses of seizure meds...ungodly amounts. By this time the kids were teenagers and another milestone took place.....Lucas graduated!!!! I was so proud!!!! While everyone else was crying because they're kids were no longer babies, I was crying because my son who wasn't even supposed to make it this far was a high school graduate!!! Of course with age comes deterioration and that's just what started happening. He wouldn't eat as much and wouldn't exercise which is essential to this disease. He just didn't feel like doing anything and had days of struggling to breathe. Linsy became rebellious and that was a struggle in itself. Lezly was playing basketball and was in pretty good health considering. But then...Linsy got married and left home. Lezly hurt her knee and was unable to exercise. Then in June of '08 Lezly took a turn for the worse and almost died. Her lungs had a very bad nasty infection which left her with only 30% lung function. She was in the hospital for the whole month of June. Then Luc took a turn for the worse. He was in the hospital the whole month of Nov and most of Dec that year...he was released on the 23rd of Dec, just in time for Christmas at home. But then back to the hospital he went at the end of Feb '09. I was keeping books for the high school basketball teams and we were in the area tournament. Wade called and said that they thought Luc had had a stoke. I went to see him on Friday and he acted like he didn't know me. The dr said Luc's lungs were improving and that he was sure he would pull through this time too. I went again on Sunday and he sat up in bed, drank a mt dew and watched the Mavs on tv. He talked to us some and then said he was tired and laid down. I prayed for him before I left asking the Lord to take care of him and thanked Him for letting us have Luc for as long as we did. I prayed that if it was God's will to take him then that's what I wanted to...I just wanted God's will and so I put Luc in His hands. Monday, he wouldn't wake up. I got there at midnight and watched him struggle to breathe. They had him on oxygen and with every breath he took the bed shook. I stayed by his bed praying and watching him. I wanted to grab him and run with him but I had given him to God the day before. And so we prayed that he wasn't suffering much. Family started to arrive and I gave others time with him...I knew he wouldn't be coming home with us this time. This was it. This was the end. All of our struggles and fights ended with this hospital stay. I felt defeated and lost. Not sure what I was supposed to do or act or feel. Every breath he took was a struggle. He was in a coma. And so when his blood pressure dropped so low it wouldn't register, Wade, Linsy, Lezly and I along with other family members gathered around his bed. Wade and I was praying that God would give us a sign...anything to let us know that Luc was gonna be okay with Him. Luc opened his eyes a little and looked at us with a clarity I had never seen before. We nodded our heads and told him it was okay to go with Jesus. He took one more breath and that was it. At that same time a lullaby started playing on the hospital intercom signaling a baby had just been born. God gave us the peace we needed. Lezly has been in the hospital many times since then and with every stay I worry. She's not as healthy as she has been in the past and it scares me. Linsy is pregnant with her 3rd child...due sometime in Oct. God is still with us and giving us the strength to get through our hard days. It's difficult to see all of Luc's stuff sitting around, his clothes still in his closet. Sometimes I like to go to his room just so I can smell him again. I miss my son. A mom is supposed to protect her children and I feel that I've failed in this. I get mad at this life and I get mad at CF but I hold on to God's unchanging hand and He has never failed me. I don't understand all of His reasons but that's okay....He's the One in control, not me! I told all this so that people might could try to understand where I've come from and where I am now.