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 :)
Internal Conflict...the rest of the story
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After a harrowing night of plane delays and rescheduling, I returned to my
original flight (once I knew it was actually going to take off!) We left TX
at a...
2 months ago
10 comments:
We are so glad that Luke is doing okay and that you and your family had a positive hospital experience. Wanted to let you know that children, like Luke, who have received care from a local children's hospital and their families are traveling to Washington, D.C. on June 15-16 to tell their representatives how health reform will help them on a day-to-day basis and what yet needs to be done. These children and their families are dedicated to making sure that high-quality pediatric care remains available to all kids. If you'd like to learn more about what these families are doing to help improve pediatric care and help cheer them on, visit our page. http://childrenshospitals.typepad.com/2010allstars/2010/04/meet-joey-b-summerviller-sc-.html
Any chronic disease can be dangerous if not treated on time this indicates findrxonline in their articles, in many cases the drugs are of great help to counteract the chronic pain, but there are other supplements that science should be regarded as vegetables and vitamin supplements, many consider the medicines are of great help to counteract the pain, especially opioids narcotics such as Vicodin, Lortab, hydrocodone, oxycontin, oxycodone, tramadol, and many others that exist in today's market, but I think we should also consider as an additional alternative to supplement the vitamins such as calcium, B complex, vitamin C, do you think it is a contribution to people with chronic disease?
:)I have cf and i know sometimes it gets very hard to do all the stuff that a cf mom has to do! Im 16 and ever since day one my mom has done a wonderful job of taking care of me. Just hang in there and keep your faith in God<3
How are you guys doing? I am praying that things are well with you and your family.
-Someone who checks your blog every now and then!
Courtney, found your blog. Wondering how Luke is doing? I am a researcher that is studying cystic fibrosis and nutrition, weight gain and things like that. Our data suggests that it is not the fat qiantity per se. Quality matters a lot as well. I think that recommendations of low saturated-fat diets from non-CF population may apply in CF population as well. I wish you guys to be strong and be well. We have a girl in our lab with CF and I see it every day to remind me why I am doing what I am doing. Hang in there!
Hi Courtney. I'm Darby...just a fellow CF mom with a 2.5 year old son named Brady with CF. I love your blog and your ability to be so honest! Thanks for sharing! Check out our blog too...www.keepongoingnomatterwhat.blogspot.com!
I just wanted to come by and say hi. I am a 29 year old with CF. Your son is adorable!!!!!! And you are two strong parents.
Hey Great story
I have applied for a CF scholarship please se emy story and please vote for me. Please pass it on. It's like American idol. http://www.CFCareForwardScholarship.com/profiles/2011/fatima-p.html
I love your blog, your honest and open and luke is lucky to have you fighting for him. I would love to follow your blog and if you would like take a look at mine. Jack is 15..
elizabethwclark.blogger.com
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