Thursday, May 20, 2010

Putting One foot in Front of the Other

When Luke is in the hospital and then the preceding week and a half or so after he is discharged I never feel quite in control of life. It's rather irritating but I have learned that I can just float along as the waves crash. Sometimes it's rough, like today, but I have learned that in my weakness, physically and spiritually, I can make it when I call on Christ for strength.

Sometimes people say that I handle things well and that they admire my strength. I have yet to understand this. Maybe it is because I was raised by sacrificing parents but I don't see how I could NOT do what I am doing. Sure, there are days that I feel like giving up but one foot in front of the other and keep plodding along. The song from Finding Nemo often pops into my head on days when every time I pass my bed I long to crawl into it.

Today is a tired day. That is why I have a hard time when Lukie is on IV's. I get almost no sleep. I am working on having grace even when I was up late at night and then awoken by my laughing, loud toddler at 6.30 am. I believe that I got 4 hours last night and they weren't even consecutive hours. This is totally normal for the weeks after a stay. The infusion schedule is such that trying to go to bed while infusions are running is just senseless.

Today I feel weak. Today I am holding onto the hope that 'when I am weak, then am I made strong'.

So today I will keep plodding along. I will keep watching the kids. I will make supper. I will maybe even run. Maybe today I will keep moving forward because there is no other way for me to go. And honestly, I am enjoying this because someday in the future, my children won't be here and I will have all the time in the world to sleep. Until then though.... 'just keep swimming, just keep swimming...'

PS- We are walking in Great Strides on Saturday to raise money for a cure :) Please consider donating any amount to the CFF in Luke's Legions name. You can click on the Great Strides widget on the side to make a donation. Thank you. Everything helps us find a cure :)

Saturday, May 15, 2010

Change of plans!

Today we were supposed to be doing family things and in a way we did. We took Lukie to the hospital together!

Luke is going to be in a for a few days (hopefully only a few) to be cleaning out his system. He is not super sick, just has a cough that he can't seem to shake. Poor little guy :(

He is all nice and settled in on his favorite floor with his favorite nurses. I think he actually enjoys being in the hospital because of all the attention that he receives.

Tonight he is spending the night with Daddy and me and Ana are going to have a girls night here at home. I can't believe how quiet my house can be without Luke! He sure is loud.

Anyways, if anything big happens (which I am praying doesn't) I will try to keep my blog updated about. Have a great weekend!

Wednesday, May 12, 2010

Wordless Wednesday- Peace

Monday, May 10, 2010

What My Children Have Taught Me

Lately I have been thinking a lot about areas of my life that need change. Some of these areas are pretty basic. I have allowed many things into my life that have caused bad roots to take hold of my heart. I am striving (by God's grace) to rid myself of them.

Some of these things I have learned not from hearing amazing messages from the pulpit, although I assure you that God has brought some amazing teachers into my life, but I have learned these things from my children. I spend almost 24/7 with my children. I wake to the sound of Luke breaking eggs into the couch (long story) and before I go to bed I hook Luke up to his feeding tube. I am constantly around them and I love to observe them playing and interacting with each other.

The first thing that I am learning from them is patience. I do not mean that they are teaching me patience though. What I mean is that I see in them the impatience in my own life. There will be times that I discipline Luke because he wants his food right this instant. Luke will throw a royal tantrum because he is getting the food he wants but not in the time frame that he wants it. I am working on it, just not fast enough for him.

That is when I see myself in him. That is when I am ashamed. I also throw royal tantrums when I do not get my way fast enought. I act just like a 2 yr old who wants it his way or else. I am blessed with a longsuffering husband but I fear that over the years I have abused that facet of his personality. I have caused him much grief by figuratively throwing myself on the ground and then proceeding to kick and scream. Usually, he acquiesces. Not because he is a push over but because he is self sacrificing and a peacemaker.

I am praying that God will help me overcome my lack of patience. Things don't always move in a timely manner and that is life. The world is NOT on my time table. I wish it were and that I didn't have to wait for my husband to come home from work, or didn't have to wait for and hour in the Dr's waiting room. Unfortunately, these are all normal occurrences. Life happens and God has given me the grace to deal with it. However, I usually try to handle it in my own strength and fall flat on my face. I am resting in the fact that even though I will still fail in the future, God can bring me through this vice in my life.

Ecc 7:8 Better is the end of a thing than its beginning, and the patient in spirit is better than the proud in spirit.

1Cr 13: Love is patient and kind; love does not envy or boast; it is not arrogant

Rom 8:24For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for?
Rom 8:25 But if we hope for that we see not, [then] do we with patience wait for [it].
Rom 8:26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.
Rom 8:27 And he that searcheth the hearts knoweth what [is] the mind of the Spirit, because he maketh intercession for the saints according to [the will of] God.
Rom 8:28 And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose

Thursday, May 6, 2010

Just trying to Survive... and to change

Lately I feel like I am just barely keeping my head above water. That is why I have not posted in awhile :(

I am finally caught up on laundry, my house in some semblance of cleanliness, and Luke is on his VEST. It is time to blog.

Lately my life has been chaotic and tumultuous. There are things that have happened that I am not proud of but we have moved on and are now flowing into the ebb of our family life and the new schedule that we have.

Why do we have a new schedule? Dan got a new job in the City. So that means that he has quite the commute. He isn't home very much so almost all of the taking care of the kids falls on me. I am fine with this. A few months ago I may have balked at the idea and protested, thinking that it's my right to have a break. That I should be allowed some freedom. I don't really view motherhood like that anymore. I now view motherhood as my ministry. It is my job and I enjoy doing it. I am finding that the more I am thankful and appreciative of my children the less I freak out if things don't go according to plan.

I still have my meltdowns and I still feel like giving up some days but God is giving me the grace to get through and I feel that I am finally realizing the power of grace in our lives. I am praying that my new appreciation and understanding of grace will help me to extend grace to others and to not get so worked up over the little things.

Grace abounds in the chief of sinners and I can testify to this fact. I also know that since grace has been extended to me, it's now my turn to extend grace to others. I am now choosing to overlook others faults and sins and love them for who they can be and what God can do in their lives. Being judgmental and harsh is something that I am shunning. I am going to strive to show grace to others so that through my grace showing they will see a teeniest, tiniest example of grace that God extends to those that He calls.

I am hoping that over the next few months/years I will build a stronger base of my theological views. I used to think that knowing theology was prideful, that when people spewed off all of the -ism's that they were just showing off. I now know differently. Knowing what I believe is just as important as believing. I am not willing to be blind and ignorant anymore.

I finally feel the freedom to become theologically sound without the fear that what I am doing is something that only men do. That is a lie and I feel it is a reason that there are so many weak and fickle women in the Christian realm. I am NOT choosing to be taken with every wind and doctrine. Instead I am choosing to become knowledgeable so that I can then teach these truths to my most important undertaking. My children.

This may be disjointed and it may be weak but I will never claim to be a writer. I am just a woman (although I feel like a girl) that is trying to experience a deeper, more meaningful walk with her Savior.

Thursday, January 14, 2010

Just Because

I decided to upload a few new pictures just because it's been awhile.

Here's Ana thinking that she has a strange Mommy :)

Luke playing at his appointment on Tuesday and yes, I cleaned the entire thing with a disinfectant wipe before I let him touch it :)

We have been dealing with icky noses lately and this is just one of the many times that I needed to wipe Luke Man's nose.

Tuesday, January 12, 2010

Frustrating Clinic

So this might turn into a mini rant so if you read this whole post I am quite impressed.

Today was a baaaad clinic visit. Medically, mentally, and physically (well, for Luke anyways). We have been keeping a close eye on Luke's weight and I know that I have mentioned it before on here. I have been feeding him super high fat and calorie foods, giving him 3 scandishakes a day, and always giving him milk before naps, bed, and with dinner. However, I knew his weight was not changing. I had set him up a profile on Wii Fit and have been keeping track of his weight. He still can't seem to pull past 25 lbs.

I was hoping that the same thing would happen at clinic that has happened before. They tell me to keep giving him high cal/protein/ fat foods and scandishakes. They didn't do that. Eileen came in very serious. I hate when people are serious. She is very concerned that Luke has some underlying issue that is going on that she can't put her finger on.

They think he might have diabetes or Celiacs. I know that Celiacs is treatable and that if kept on a the right diet totally manageable. It's just frustrating to think that Luke has to deal with CF and a digestive issue. Besides,(most) gluten free foods taste nasty and I feel for the child! I did gluten free diet for awhile and it was not yummy!

I have a feeling that he doesn't have it though. Which wouldn't exactly be a good thing.

If all the blood tests they did today come back negative Luke is more than likely getting a g-tube placed. I don't know how I am going to manage that. Remember, Luke pulls PICC's out. I have no idea how he will handle a g-tube. Not to mention he is in a big boy bed and all I can imagine is him getting up in the middle of the night and being attached and pulling it out.

Luke has had a total reversal it seems. In the beginning he gained like a champ but he had serious lung issues. Now it's changed and Luke's lungs are extremely clear but he hasn't gained weight in a year.

He looks and acts sooo normal. He's happy and loooves to eat. The kid can plow through a McDonalds Happy Meal quicker than I can eat a Big Mac and that's pretty fast!!

I am a control freak. Pure and simple. I know it. Dan knows it. Most people who meet me know it. I am having issues dealing with the fact that I can't control Luke's weight gain.

I see other CF kids seeming to do fine. No g-tubes, no ports, no extra 'underlying' problems. I feel like Luke got a raw deal.

What kills me is that I can't help him. I have tried and I failed. I feel like the biggest failure ever. I can't even make me son gain weight. I pump about 2500 calories into Luke every day. 1800 of those are from Scandishakes. It's impossible for me to give him any more calories. I make the fattiest meals, I give him the fattiest drinks. Nothing works.

I don't know. Maybe none of this makes sense. Maybe I am not getting my thoughts across. I never have been linguistically gifted.

I am just overwhelmed right now.

This could all be getting to me because I have a cold and am exhausted. I think that I have been pushing myself too hard but unless I do something, it never gets done. Dan tries to help but he has work responsibilities and we REALLY need every paycheck so I don't want him to compromise his job in any way.

It's stinks because even if all the tests come back negative I know that he will probably still have to undergo surgery and deal with all the crap that a g-tube brings.

I don't even know what to think. What do I hope for?? Celiacs?? Diabetes?? G-tube?? None of them sound good.

I just wish it could all go away.

Seriously, we need a stinkin cure. Like now.