People Don't Want to Hear It

You may be one of the people who don't want to hear about sick kids, a family that struggles or the frustrations of daily life with chronic illness. Until 2013, I never totaled our medical bills as we went along- we did that when it was time to file taxes. If you remember correctly, I wrote about how 2013 was going to be different. I let folks know that I would be sharing the good, the bad and the ugly.  I'm not writing for pity or to raise donations for our family. I am writing (here, on FB, Twitter....) to expose Obamacare and the liberal lies about the law.

I fully understand that some people cannot stomach it. I get that others will simply see it as whining and complaining. I get that some people will run the other way to avoid contact. That's life with chronic illness. People do that, anyway. Remember Church lady? She told me that satan had a hold on me and that it was a blessing and a curse to know my family. She called and yelled at me over the phone one night was seemed to be an eternity. She wasn't even someone I spoke to about any of the boys' issues. Yet, here she was flaming mad........ people just don't want to hear it.

I blog about many things- what you don't get here are the midnight headaches and dizziness, the pumps breaking during infusion, an abscess site not healing, emergency room visits, daily pain issues, bone marrow biopsy issues, etc. I post on FB about it were a limited number of folks on my friends list can see. People that I assume I can trust are on my *close friends* list. I private message maybe 3 people about our struggles, text one friend and email one other.  I try not to talk to people at Mass because I know they just don't want to hear it.

This would be an example of what not to say to someone who is really struggling with two sick kids, impending financial ruin, not being able to get her children's medications shipped directly to her house, and all that goes with chronic illness:

• "Instead of repeatedly letting Satan, his activities, and his many duped minions continually control/dominate your thoughts, feelings and time and energy, channel all that energy into something constructive instead of dwelling/living in all the drama - which gets you nowhere, burns you out, and tends to push people away from you."

You may well be correct in your assumptions, but you may miss the mark. Perhaps in a rush to judgment, you could fail to see that the current mental angst and reactions to stress only happen every few years..... and even if it occurred every single day, would the reaction to the constant pressures be wrong? 

I have a challenge for all of you reading today. I realize that you can't actually do it, but you can imagine it: Rack up over $60,000 in credit card debt from medical bills in 17 years, take out several loans to pay medical bills & pay them off, take out another loan,and two other loans against your 401K adding to that 60K in credit card debt. Then rack up over 18K in the first 7 months of 2013 because ‪#‎Obamacare‬ has made everything worse.... AND then head to an appointment where you have to put another $800 on a credit card so your child can receive the dental care he needs. Would you be letting people know how much worse #Obamacare has made your life? Keep in mind that while all of this is going on, we ALSO deal with daily medical issues at home..... and I do talk about those to my *close friends* list. I don't share this crap for pity or to solicit donations. I share so that, maybe, you'll get off your ass and join me in the epic battle of taking our nation back so my children can actually LIVE and receive medical care. If I said all these things and then sat on my ass and did nothing, you'd have every right to talk smack to me, but I'm not sitting on my ass just telling people what is happening, I am WORKING my ass off to make a difference! Before you judge me, look at the whole picture. Before you judge me, realize that talking about this was my pledge at the end of last year-- the good, the bad and the ugly- all to wake people up. We live with the daily knowledge that, at some point, we will run out of credit and we won't be able to pay the $532 copay for a life-saving medication. Tell me that knowledge wouldn't make you feel an urgency to shout from the rooftops. You are free to walk away - I don't make anyone stay. I have the fortitude to withstand any trial because God is on my side- I need no human being to prop me up. God will sustain us in this battle.

I'm battling for my children and children like them. I don't need human approval to discuss what my family is going through. I will gladly accept the wrath of those who disapprove! 

One Down, Two to Go!

What a blessing it was to see my oldest graduate! There were many days we didn't think it would happen. It can be done! I was still feeling overwhelmed by God's many blessings at Mass yesterday morning. Thanks be to God, one down, two to go! We have been asked SO many times over the years, "Are you going to homeschool them through high school!?" I usually tell people if it is God's will, we will homeschool through high school. Before we ever started homeschooling, we prayed. We never stop praying! God has answered our prayers in so many amazing ways. We had doubts, but we entrusted our children to God. I do believe that our family is an example of God's grace in action. God truly, truly has made up for we are lacking. NONE of this would have ever been possible without HIS amazing grace! We believe that God will continue to pour forth His grace upon us and we will be able to see the last two walk across that stage in His time. God is so amazing! Jesus, we trust in YOU!

I was filled with joy as graduation was about to begin. God is so good! God has done amazing things! It has been an amazing journey to get here. So very blessed to have been given the gift of Matthew and to participate in his upbringing. I was overwhelmed by our blessings on graduation day. Congratulations, Matthew! As always, my prayer for you is that you love God above all else. If you do that, everything else will fall into place. Looking forward to all the wonderful things God has in store for your future.

Thursday, our pediatrician was really excited about this article she read that said homeschooling students' thought processes are different and many IVY League schools are looking for them. Seeing all these pro-life, conservative kids this past weekend was a blessing. They all stood and gave Dr. Clark a standing ovation when she gave a few remarks on common core, government funding of private Christian schools watering down the education system.... and she reminded them why they all have to write a paper on Roe v Wade- so they could be prepared to face the culture of death with ANSWERS! WOOO HOOO to all of the Seton graduates and homeschoolers everywhere! Dr. Clark also told them that we need to pray for these schools to stand up to common core and to the government take-over of education. She spoke about the assault on traditional marriage and Christian values-- and these kids stood up ON THEIR OWN to cheer her BEFORE her actual prepared speech on Hope! It gave me goosebumps knowing that these were only 120 of the over 700 Seton graduates for 2013!! GOD is GOOD! Homeschoolers really give me hope for our future!

Words cannot even begin to describe how we felt Saturday. Being around the next generation of pro-life, Catholic conservatives really warmed my heart. I know these Seton grads will not be afraid to stand up! Knowing that we were with 120 of the 700 graduates filled me with even MORE hope. Watching the graduates find each other and talk was amazing. Another girl going to Belmont Abbey found Matthew and struck up a conversation. Reading their bios in the program. Seton grads are absolutely AMAZING! Gosh - just amazing kids. GOD is Awesome.

My Book Available on the Nook

I was so excited to learn that B& N picked up my book on the Nook! Bone Marrow Biopsy Day is now available.

I knew Amazon had picked up my two books, but didn't know B&N had.

That's my exciting news for the day!

Another Year, Another Few Surgeries and Procedures

I've been horrible about blogging here. I really thought that Romney would win the election and I could stop my political ranting on my Catholic Tea Party Hippie Blog. Things have gotten so much worse, we are closer to financial ruin..... we are still fighting. We knew this would happen if Romney got in, but felt like we'd see the light at the end of the tunnel if he won. We could mount up debt this year and hopefully recover in subsequent years.

Now we are out of credit and can't afford the $495 copay for a medication that protects my son's kidneys. We found out a few weeks ago that the hydronephrosis is worse and that he has a rather large cyst on his right kidney, too. Some splitting of the renal pelvis (like I know what that means-- just an effect of the hydronephrosis.

They boys will have their bone marrow biopsies in June. While we are in Cincy, we are adding on a urology visit and some extra testing. We will also see a hip specialist, as last week we saw an ortho for Js lifelong hip pain who thinks his x-ray is abnormal and referred us to a hip specialist.

M has completed all of Seton's work and will officially graduate next month. One down, 2 more to go! He leaves for Belmont Abbey in the fall.

I'm just somewhere in the middle wondering what God is thinking. 4 surgical procedures in a year... wow. Please no more surgeries, Lord. I know He will provide and that He has a reason for all of this.