Yes, it's that time of the year. The most wonderful time of the year. The fun, exciting, blessed time of the year. Or that's what it's supposed to be.
For me, it's the time of year that the sorrow, emptiness, and grief somehow seems stronger. Lucas is gone...never to be here again. Linsy and the grandkids are in another state, not even sure if they'll come up. So it's just Wade, Lezly and I. I'm grateful that I'm not alone on Christmas...there are so many who are. But I remember the times when the house was full of kid's laughter, traditions, Christmas music, smells of goodies, presents wrapped, anticipation, excitement. Now our house is filled with silence. I try to make it happy...I do. But I cannot do it alone. It's just not the same anymore.
It's true what they say...Christmas is for children. I see that now. I love to see how excited they are in the stores looking at the toys and talking of Santa. They are pleased and grateful with what they get as gifts. Oh how things change when they get older. The gifts wanted become more expensive and being grateful is often a thing of the past. They are jealous of what others get and sometimes pout and complain and really lose the true meaning of Christmas. We all do!
The real gift is LOVE. Why can't it be given more? Why do we not share what we have, whether little or big, with those less fortunate? Why can't we be nicer to people? To family? To strangers? Isn't that what the true meaning of Christmas is?
So I will look around to see what I can share. I will try to smile more and love more. I will be grateful and remind myself of the true meaning of Christmas. I will do what I can to see joy on someone's face. To show someone what a blessed, wonderful time of the year it is. Of course, I will do this for others....even tho I can't do it for myself.
Oh Lord, how I need You during this holiday, for I cannot do it alone! It's Christmas time and I need a Christmas miracle!
Saturday, December 18, 2010
Wednesday, November 10, 2010
I'm struggling....
Today has been a struggle. I have tried so hard to hold it together and not break down and cry in front of teachers, friends, family. I did good earlier in the day....but I can't hold it in any longer. Now I'm trying really hard to quit crying.
Last year at this time, we were struggling with all the 1st's that we were having to deal with without our son: the 1st Cowboys football game, the 1st Halloween, the 1st Thanksgiving, the 1st Christmas, the 1st birthday, the 1st New Years. It was extremely painful. This year seems harder somehow. I look at pictures and it hits me that he's missing from them. I think of Thanksgiving dinner and it hits me that he won't be sitting at the table with the rest of us. I think of Christmas presents I still need to purchase and it hits me that his gifts will no longer be under the tree. It hits me that as I decorate our tree, his ornaments will not be put up by him, only by one of us. I guess last year I was still in shock with it all....and this year it has hit me hard.
I'm not sure if Linsy and the babies will get to be here for Thanksgiving or Christmas. She lives too far away from me and I don't like it!! It hurts me that I don't get to see her as often as I need to. I miss her so much! At times I feel like I've lost her too!
Lezly has her good days and bad days....but I've realized that the good days are few and far between. I know how hard she's fighting for those good days. I'm trying to fight right beside her too....but it gets hard. And if it's hard for me to continue fighting, I know it HAS to be so much harder for her. And that hurts me.
And Wade....bless his heart. He has endured so much pain with all this and yet he has been so strong. Having to be strong for not only himself but for us girls too! He has been my rock throughout all this....but I know he's hurting too. I worry about his health with all this stress and the heartaches. And it scares me.
Lord, I so need your help!! How can I be there for my family when I can't even be there for myself? How can I be strong for them when I can't even be strong for myself?
Today I'm struggling.....but hopefully tomorrow will be better.
Last year at this time, we were struggling with all the 1st's that we were having to deal with without our son: the 1st Cowboys football game, the 1st Halloween, the 1st Thanksgiving, the 1st Christmas, the 1st birthday, the 1st New Years. It was extremely painful. This year seems harder somehow. I look at pictures and it hits me that he's missing from them. I think of Thanksgiving dinner and it hits me that he won't be sitting at the table with the rest of us. I think of Christmas presents I still need to purchase and it hits me that his gifts will no longer be under the tree. It hits me that as I decorate our tree, his ornaments will not be put up by him, only by one of us. I guess last year I was still in shock with it all....and this year it has hit me hard.
I'm not sure if Linsy and the babies will get to be here for Thanksgiving or Christmas. She lives too far away from me and I don't like it!! It hurts me that I don't get to see her as often as I need to. I miss her so much! At times I feel like I've lost her too!
Lezly has her good days and bad days....but I've realized that the good days are few and far between. I know how hard she's fighting for those good days. I'm trying to fight right beside her too....but it gets hard. And if it's hard for me to continue fighting, I know it HAS to be so much harder for her. And that hurts me.
And Wade....bless his heart. He has endured so much pain with all this and yet he has been so strong. Having to be strong for not only himself but for us girls too! He has been my rock throughout all this....but I know he's hurting too. I worry about his health with all this stress and the heartaches. And it scares me.
Lord, I so need your help!! How can I be there for my family when I can't even be there for myself? How can I be strong for them when I can't even be strong for myself?
Today I'm struggling.....but hopefully tomorrow will be better.
Wednesday, October 27, 2010
I've learned.....
I've been thinking about things I've learned in the past 2 years...actually probably longer than that but the past year or two has been at the forefront of my mind. Things change so fast. In the blink of an eye sometimes. In a heartbeat. In a breath. Again I will say that I do not write these things for you...I write them for me. It's very therapeutic for me when I can see my feelings written out. Somehow it doesn't make my life seem so hellish and it helps me deal with it. So if you read this, I appreciate you taking the time and caring. If you don't, well that's okay too...it's not gonna kill me, break my legs or make me ugly. (that's something I always told my kids when they didn't wanna do something I told them to do. LOL)
As many of you know, the past 2 years we've had more than our share of heartaches, illnesses, and losses. We've struggled with what Life has dealt us but yet we've held on to God and each other and we've survived. Well...we're surviving. Doing the best we can with what we've got and trying to make it all worthwhile. But through it all I've learned so much. Yet I know I still have so much more to learn.
Here are some of the things I've learned:
>I've learned that time is short with our loved ones and we must make our time with them as memorable and as loving as we can.
>I've learned that there are things beyond my control and there is NOTHING I can do to change it...no matter how much I want to.
>I've learned that just because you are "family" doesn't mean you can use that as a right to hurt me or say rude, inconsiderate words to me. And it doesn't give me the right to do the same to you.
>I've learned that family and friends won't always be there for me, support my decisions, or help me in my struggles.
>I've learned that just because you don't THINK something will happen, doesn't mean it won't.
>I've learned that strangers can become best friends and best friends can become strangers.
>I've learned that parents often outlive their children.
>I've learned that no matter how hard and stressful my life is, there is always someone who has it worse.
>I've learned that just because I taught my kids about God and taught them right from wrong, they get to the age that they make their own decisions and all I can do is pray for them to make the right ones.
>I've learned that no matter how I want things to turn out...they seldom do.
>I've learned that even when I don't feel like smiling, I can fake it really good.
>I've learned that it's okay to ask for help, even when there is no one there to help me.
>I've learned that money isn't everything...but time is.
>I've learned that there are those who surprise me....some in a good way, some not so much.
>I've learned those I thought would never leave me, did. And those I thought would, didn't.
>I've learned that just because you share the same blood doesn't mean you share the same hopes, dreams, and worries.
>I've learned blood isn't what makes a family. Love is.
>I've learned that it's okay to stay awake all night and sleep all day. It works for me.
>I've learned that it's my life and I'm the one who has to live it. I will stand before God concerning my stuff, not you.
>I've learned that going to church every time the doors are open, doesn't mean I have a free ride to Heaven. It's so much more than that. I've also learned that God loves me regardless if I go to church or not.
>I've learned that I have so much more love, respect and compassion for those who struggle with illnesses, death, and tragedies.
>I've learned that it's okay to say "I'm having a rough day" or "today I'm struggling".
>I've learned that not everyone understands me or my life, or even cares to try to understand. And it's okay.
>I've learned that I expect too much from people and I'm usually disappointed.
>I've learned that when I think I can't go one more day or even one more step, God gives me the strength to go on.
>I've learned that thinking positive may help the attitude but it really doesn't help the physical.
>I've learned that music can heal the soul. So can screaming, crying, writing, and talking.
>I've learned that burying my only son, my firstborn, my child was the hardest thing I've ever had to do.
>I've learned that there are times that we cannot protect our children...no matter how hard we try.
>I've learned that things can change so fast....and other things change over time.
>I've learned that no matter how much you want things to be different, sometimes it doesn't work that way.
>I've learned that we all have a cross to bear and most times we have to bear it alone.
>I've learned that a hug can cure the "blues".
>I've learned that a beautiful day can be sunny or rainy...depends on what you find beautiful about it.
>I've learned to appreciate nature and I can see God's hand in it.
>I've learned that 50 is not old....neither is 80.
>I've learned that it's okay to not clean house every day or to leave the dishes for the next meal. Spending time with my loved ones is more important.
>I've learned the value of a dollar, a quarter, a dime, a nickel or even a penny.
>I've learned it's okay to not clean out Luc's closet. I can still go in there and smell him on his clothes.
>I've learned that grief is not something you can just "get over" like the flu. And it's okay to still be feeling the "effects" even after a year or two...or even 14.
>I've learned to realize how many "firsts" there are without him. First holiday, first birthday, first football game, first camping trip, first vacation. As my friend Sarah says, "we are a family of 5 minus 1". Of course, the numbers have changed because of grandkids but we're still "minus 1".
>I've learned that being a little overweight is okay....as long as I am happy and my husband still thinks I'm gorgeous.
>I've learned that fighting for something even when I'm tired is better than giving up.
>I've learned that photographs say so much even when you don't want to see/hear what they are saying.
>I've learned that everyone has different opinions and it's okay. We don't all have to agree.
>I've learned that sometimes saying nothing is for the best....but sometimes saying nothing can be hurtful.
>I've learned that sarcasm and sincerity are two things that can be misunderstood when typed, texted, or written.
>I've learned that I am a strong woman.....even when I don't feel so strong.
>I've learned that it's the little things that have become more important to me. A smile, a hug, a cold Coca-Cola, a Hershey bar, a note from a friend, a text, a funny story.
>I've learned that some people lie, cheat, steal......doesn't mean I have to.
>I've learned that just because I pray about something doesn't mean that it'll be enough to change the situation...but I still pray.
>I've learned that Life is hard. It's sad. It's painful. It's stressful. It's lonely. But it can also be beautiful.
>I've learned that no matter how much I make sure my family is taken care of, sometimes I fail. I do what I can and sometimes it's not enough. Doesn't mean I should stop "doing".
>I've learned that sometimes a cure is not meant for us....that's okay. As long as we keep God first and foremost then we will make it.
There is so much more stuff I've learned. I'm still learning things every day. The main thing I've learned is that Wade, Lezly, Linsy, Brexton, Braylee, and myself are a team. And as long as we stick together, we can get through anything....the ups, the downs, the rough patches, the happy times. As individuals we are weak but as a team we are strong. We inspire each other. We support each other. We listen, we talk, we cry, we encourage, we pray....for each other, with each other.
I thank you, Lord, for my family and for my friends.....I am truly blessed. Thank you for my strength, Lord...for I could not do this alone. Thank you for standing beside me, for loving me, for showing me Your Grace and Mercy! Amen
As many of you know, the past 2 years we've had more than our share of heartaches, illnesses, and losses. We've struggled with what Life has dealt us but yet we've held on to God and each other and we've survived. Well...we're surviving. Doing the best we can with what we've got and trying to make it all worthwhile. But through it all I've learned so much. Yet I know I still have so much more to learn.
Here are some of the things I've learned:
>I've learned that time is short with our loved ones and we must make our time with them as memorable and as loving as we can.
>I've learned that there are things beyond my control and there is NOTHING I can do to change it...no matter how much I want to.
>I've learned that just because you are "family" doesn't mean you can use that as a right to hurt me or say rude, inconsiderate words to me. And it doesn't give me the right to do the same to you.
>I've learned that family and friends won't always be there for me, support my decisions, or help me in my struggles.
>I've learned that just because you don't THINK something will happen, doesn't mean it won't.
>I've learned that strangers can become best friends and best friends can become strangers.
>I've learned that parents often outlive their children.
>I've learned that no matter how hard and stressful my life is, there is always someone who has it worse.
>I've learned that just because I taught my kids about God and taught them right from wrong, they get to the age that they make their own decisions and all I can do is pray for them to make the right ones.
>I've learned that no matter how I want things to turn out...they seldom do.
>I've learned that even when I don't feel like smiling, I can fake it really good.
>I've learned that it's okay to ask for help, even when there is no one there to help me.
>I've learned that money isn't everything...but time is.
>I've learned that there are those who surprise me....some in a good way, some not so much.
>I've learned those I thought would never leave me, did. And those I thought would, didn't.
>I've learned that just because you share the same blood doesn't mean you share the same hopes, dreams, and worries.
>I've learned blood isn't what makes a family. Love is.
>I've learned that it's okay to stay awake all night and sleep all day. It works for me.
>I've learned that it's my life and I'm the one who has to live it. I will stand before God concerning my stuff, not you.
>I've learned that going to church every time the doors are open, doesn't mean I have a free ride to Heaven. It's so much more than that. I've also learned that God loves me regardless if I go to church or not.
>I've learned that I have so much more love, respect and compassion for those who struggle with illnesses, death, and tragedies.
>I've learned that it's okay to say "I'm having a rough day" or "today I'm struggling".
>I've learned that not everyone understands me or my life, or even cares to try to understand. And it's okay.
>I've learned that I expect too much from people and I'm usually disappointed.
>I've learned that when I think I can't go one more day or even one more step, God gives me the strength to go on.
>I've learned that thinking positive may help the attitude but it really doesn't help the physical.
>I've learned that music can heal the soul. So can screaming, crying, writing, and talking.
>I've learned that burying my only son, my firstborn, my child was the hardest thing I've ever had to do.
>I've learned that there are times that we cannot protect our children...no matter how hard we try.
>I've learned that things can change so fast....and other things change over time.
>I've learned that no matter how much you want things to be different, sometimes it doesn't work that way.
>I've learned that we all have a cross to bear and most times we have to bear it alone.
>I've learned that a hug can cure the "blues".
>I've learned that a beautiful day can be sunny or rainy...depends on what you find beautiful about it.
>I've learned to appreciate nature and I can see God's hand in it.
>I've learned that 50 is not old....neither is 80.
>I've learned that it's okay to not clean house every day or to leave the dishes for the next meal. Spending time with my loved ones is more important.
>I've learned the value of a dollar, a quarter, a dime, a nickel or even a penny.
>I've learned it's okay to not clean out Luc's closet. I can still go in there and smell him on his clothes.
>I've learned that grief is not something you can just "get over" like the flu. And it's okay to still be feeling the "effects" even after a year or two...or even 14.
>I've learned to realize how many "firsts" there are without him. First holiday, first birthday, first football game, first camping trip, first vacation. As my friend Sarah says, "we are a family of 5 minus 1". Of course, the numbers have changed because of grandkids but we're still "minus 1".
>I've learned that being a little overweight is okay....as long as I am happy and my husband still thinks I'm gorgeous.
>I've learned that fighting for something even when I'm tired is better than giving up.
>I've learned that photographs say so much even when you don't want to see/hear what they are saying.
>I've learned that everyone has different opinions and it's okay. We don't all have to agree.
>I've learned that sometimes saying nothing is for the best....but sometimes saying nothing can be hurtful.
>I've learned that sarcasm and sincerity are two things that can be misunderstood when typed, texted, or written.
>I've learned that I am a strong woman.....even when I don't feel so strong.
>I've learned that it's the little things that have become more important to me. A smile, a hug, a cold Coca-Cola, a Hershey bar, a note from a friend, a text, a funny story.
>I've learned that some people lie, cheat, steal......doesn't mean I have to.
>I've learned that just because I pray about something doesn't mean that it'll be enough to change the situation...but I still pray.
>I've learned that Life is hard. It's sad. It's painful. It's stressful. It's lonely. But it can also be beautiful.
>I've learned that no matter how much I make sure my family is taken care of, sometimes I fail. I do what I can and sometimes it's not enough. Doesn't mean I should stop "doing".
>I've learned that sometimes a cure is not meant for us....that's okay. As long as we keep God first and foremost then we will make it.
There is so much more stuff I've learned. I'm still learning things every day. The main thing I've learned is that Wade, Lezly, Linsy, Brexton, Braylee, and myself are a team. And as long as we stick together, we can get through anything....the ups, the downs, the rough patches, the happy times. As individuals we are weak but as a team we are strong. We inspire each other. We support each other. We listen, we talk, we cry, we encourage, we pray....for each other, with each other.
I thank you, Lord, for my family and for my friends.....I am truly blessed. Thank you for my strength, Lord...for I could not do this alone. Thank you for standing beside me, for loving me, for showing me Your Grace and Mercy! Amen
Sunday, October 24, 2010
We fight....
I hate CF. I hate it so much!! I hate what it's done to our family. I hate what it's taken from us. I hate what it's still taking from us.
We fight it and fight it. We've fought it for over 25 years and yet where has it gotten us? We fight it....and for what? For us to lose our son? For us to go into the hospital every 3 months? For us to get a Port...and probably a feeding tube? For us to have maybe 1 good day out of the week?
I hate CF and I hate what it did to my son and I hate what it's doing to my daughter!
Yet we continue to fight. Even on days we don't feel like fighting. Days that would be easier to give up than to fight. But we fight. With all we've got. We fight.
We're so tired.....but we have to fight. Because if we don't fight.... ='(
We fight it and fight it. We've fought it for over 25 years and yet where has it gotten us? We fight it....and for what? For us to lose our son? For us to go into the hospital every 3 months? For us to get a Port...and probably a feeding tube? For us to have maybe 1 good day out of the week?
I hate CF and I hate what it did to my son and I hate what it's doing to my daughter!
Yet we continue to fight. Even on days we don't feel like fighting. Days that would be easier to give up than to fight. But we fight. With all we've got. We fight.
We're so tired.....but we have to fight. Because if we don't fight.... ='(
Wednesday, September 29, 2010
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.
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.
Monday, September 13, 2010
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......
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......
Thursday, September 9, 2010
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. =(
Sunday, September 5, 2010
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. ='(
Saturday, September 4, 2010
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* =(
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* =(
Friday, September 3, 2010
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*
Sunday, August 29, 2010
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.
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.
Friday, July 30, 2010
Well today was a rough day for me. Down in the dumps, aggravated, tired...just feeling defeated. I miss my son so bad today!! Why can't anyone understand that I'm still grieving? That it's not something you get over in a few days, weeks, months or years? I struggle, I cry, I get discouraged, I want to give up! Do you know what it's like to have dreams that you know will never happen? Do you know what it's like to look forward to nothing? Do you know what it's like to lose a child, A CHILD, to a disease and then have to continue watching your other child dying from the same disease? And your other child, a non-CFer, is in an abusive relationship, is pregnant with her 3rd child, and isn't in a loving atmosphere but refuses to leave? Do you know what that's like? It's. Stress. Worry. Exhaustion. Defeat. Please don't tell me how blessed I am or how I need to look at the bright side of things. I know I'm blessed and I know there are bright spots in this life...but right now I see none. I see none....not now. Not ever.
Wednesday, July 28, 2010
Another day full of pondering....
Well it looks as if we're fixing to be car shopping. Wade's truck is not dependable and he's having to use my vehicle to go to work. My vehicle needs some work done...the air conditioner has gone kaput and when you have 95+ degree days EVERY day it's hard to go anywhere comfortably. Lezly is wanting a car and I did promise her one when we got the settlement. Unfortunately, we got the settlement but it wasn't enough to get her a car. We've found a couple that's a good price, gets good gas mileage, and is a low mileage car. Thinking how we can afford this when we have so much other stuff over our heads....but then again how can we not? I don't know. I just don't know. =(
Tuesday, July 27, 2010
It's Tuesday evening and it's such a blah-ish day. I'm trying to be happy in a world that makes me sad. Each day is a challenge. Each day is a step closer to death. It's hard not to think about it when it's always there...just on the outskirts. In the shadows of the day. Last weekend (the 17th) Luc's stone was set. 
It's beautiful but it opened up a fresh can of grief. It makes it seem so final altho I know that it's not. I still have the hope that I'll see him again...I pray I will. I have to keep my heart right with God and make sure I don't miss Heaven for anything. Bitterness tries to take that all away from me...that is my new struggle. God please help me make it through this crazy messed up unfair world.
It's beautiful but it opened up a fresh can of grief. It makes it seem so final altho I know that it's not. I still have the hope that I'll see him again...I pray I will. I have to keep my heart right with God and make sure I don't miss Heaven for anything. Bitterness tries to take that all away from me...that is my new struggle. God please help me make it through this crazy messed up unfair world.
Wednesday, July 14, 2010
Wednesday....
Happy Wednesday!! Today is a new day. A good day. Lezly seems to be feeling good...not great but good. We take every GOOD thing as a blessing and a little bit of HOPE. I miss my son today. A few days from now we set his headstone. It's been 16 months since God called him home. Some days it feels longer, other days it feels like yesterday. Today is one of those "yesterday" days. God, grant me the strength to endure this pain. I need a new touch of Your strength today. And I pray tomorrow will be better. Easier. And that I'll be stronger! Yes...tomorrow WILL be better. But until then, I'll lean on my Jesus.
Tuesday, July 13, 2010
Life...
So I was sitting here thinking of what it really means to LIVE! We are born to serve a purpose on this earth...and when we fulfill that purpose, our time here is over. I've been on this planet for 44 years and I'm still not sure what my purpose is. Growing up all I wanted was to get married and have children and grandchildren...well I've done that. Of course, my life hasn't been easy...at all!! I've endured many dreams gone awry, many damages caused by LIFE, and I have discovered so many things. My dreams of a healthy and happy family didn't come true...for the most part. We have had damages caused by illnesses and struggles. And I have discovered that not everything is what it seems. We hide a lot of our emotions, fears, disappointments. We're scared to show excitement and hope for things we cannot fully see. We cry ourselves to sleep or when we're alone to keep anyone seeing our weaknesses. But God is always good!! I am so thankful for the wonderful man He allowed me to have, the wonderful children and grandchildren. I am so blessed to be living in this country of freedoms. I am so blessed to have a home, running water, food in my belly, clothes on my body. I am thankful for a bed to sleep in. I am thankful for friends, laughter, love. I am so blessed!!! And yet...I struggle to be happy. To feel alive. To live. I struggle...and no one understands why. And so every day I search for my purpose. I realize that regardless of what happens in my day, I enjoy the little things of LIFE...and THAT is what it truly means to live. Or that's how I see it today!
Sunday, July 4, 2010
It hurts!!!
It hurts to see your child sick and hurting and knowing there's nothing you can do to help. It hurts to hear her cough so much you're afraid she's gonna rip out her throat or cough up a lung (literally). It hurts to hear her puke from coughing so much. It hurts to see her exhausted and out of breath after a coughing spell. It hurts to see the dark circles under her eyes. It hurts to hear her gasp for a deep breath knowing that the coughing is about to start again. It hurts to hear her moan from the pain she feels when she breathes, coughs, pukes. It hurts to know she's not getting enough rest, enough food, enough good days. It hurts to see her health deteriorate as the days drift by. It hurts to know that it's only been a week since she got out of the hospital and already we wonder if we should go back. How did it get this far this fast? How did it come upon us without our knowledge? What has happened? Where did we go wrong? We try our best to do what's right and healthy and beneficial and yet...it seems it's all for nothing. Nothing but heartache, sickness, fear, worry. When will it get better? When will the good days outnumber the bad? I hate CF...I HATE CF...I HATE IT!! I hate it just as much as she does!! Oh God....it hurts!!!
Thursday, June 24, 2010
My heart is breaking....
My daughter Lezly has been keeping up with little Conner and his family. I just read Sarah's last 2 blogs and it breaks my heart!! The memories and emotions of losing our son last year to this horrible disease have come flooding back. They have hit me hard...especially since I am sitting in a hospital room just a few doors down from where my son took his last breath here on Earth. I pray that this family will continue to lean on God to help them through this awful time. It makes me so mad that we fight for our child's life...we fight for every breath they take, we fight for the right treatments and the right doctors, we fight to make sure every hospital stay is not too scary and borders on fun. We fight right along side our child who is struggling...actually we fight harder because it is our child!! We only want the best for them...what parent wouldn't want that? We do our best to encourage, to show faith and hope, and to show them to always lean on the Lord. We pray and we plead, we cry and we laugh, we fear and we cherish....every moment! For we never know when that moment will be IT. And then...it seems it's all for nothing. What do we have to show for it? I am blessed to have had my son for as long as we did. I am blessed to still have my daughter, Lezly...but, I am struggling today with all of this. I'm struggling to keep up the brave face and not feel the hopelessness. I'm struggling...but God is faithful. He is with me and will never leave me. He is my strength.
Wednesday, June 23, 2010
2 more days....
Well, it's been a week and altho x-rays and spyro tests are usually done after a week...Dr N has decided to grant Lezly's wish of doing tests on Friday with the possibility of going home. So we have 2 more nights and then hopefully we can leave here and be a family again in our own home. You would think we would be able to get lots of rest and not have any stresses being at the hospital...but it doesn't work that way. And no one understands that until you've been there! 2 weeks in a hospital is NOT a vacation!! Anyway, we're hoping that Friday will be our "freedom" day! We'll see, I guess....nothing is ever guaranteed with Cystic Fibrosis and hospital stays!!
Saturday, June 19, 2010
Another day at the ZOO (hospital)
It's not even been a week in here and we're already antsy to go home! To sleep in our own beds, eat in our own kitchen, wear pj's all day if we want to. You would think sitting in a hospital room would be an easy thing...it's really not. To listen to your child suffering with coughs and pains is a hard thing! You wish you could take it all away and you say "I'm sorry" over and over, even though it's not your fault. You would do anything for your child and yet you feel so hopeless...or at least I do. The only thing you know to do is smile, try your best to make this hospital stay fun, and PRAY!! So that is what I do...as much as I can...as often as I can!
Thursday, June 17, 2010
Hospital stay, meds & PICCs
Well, just what we thought....we're in the hospital for at least 2 weeks! This is our first full day here and it's been hectic, to say the least. They gave Lezly some medicine to calm her nerves for her PICC line but they still haven't come up to get her. That was 3 hrs ago...I hope the medicine doesn't wear off before she goes down. I know she's scared and she has every right to be...she had such a terrible ordeal with the PICC last hospital stay! God, please calm her nerves and allow them to do this procedure right the first time!! She is in Your hands, Father! And please help her mama too....she needs it!
Monday, June 14, 2010
Another day of laundry...
Well today has been a day of trying to get things ready for another hospital stay. I've gotten all the laundry done except for a load of sheets that I might put off doing until tomorrow. Bags are packed except for a few toiletries that need to go in. Lezly called and talked with the dr and they've made an appt for her on Wednesday. We'll see how it all turns out but I'm pretty sure a hospital stay is inevitable. 2 weeks at the Sparks Hilton...at least I won't have to cook, do dishes or do laundry! LOL
Sunday, June 13, 2010
Raining always
They say when it rains, it pours.....it is so much more than that in my life. I prepare for flash floods. Too much hits at once and I'm left reeling and confused at what emotion I should feel. Stress? Overwhelmed? Bitter? Yes, I think maybe all the above. But tomorrow is another day full of it's own problems and new trials. For tonight I will trust that God loves me and trusts me with these new struggles. I will not turn my back on Jesus...I will keep on keeping on and lean on the Lord for my strength and comfort. For without Him I am nothing! But for the record...I hate CF and what it's done to my children and to our family!!
I'm a newbie
This is something new for me. My daughter, Lezly, talked me into doing this so we'll see how it goes. This is just a lazy Sunday afternoon where I'm taking it easy and staying in the cool air. =)
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