Bone Marrow Donor Drive

I like to share this video now and then. Back in 2006, my son almost went to transplant. We did a donor search and he did not have a match in the bone marrow donor registry, so we held a bone marrow donor drive. This is a video I created from the event:

Make a video - it's fun, easy and free!
www.onetruemedia.com

Pray for Couples with Chronically Ill Kids

Please offer a prayer for married couples with chronically ill kids. Pray that they find God's grace and draw strength from the sacrament of marriage to face the daily challenges of raising special needs kids. Pray that God gives them peace and comfort through the sacrament of marriage and the courage to work on the problems they face together with God at the center.

It is SO hard to work on a marriage when life seems to revolve around one medical challenge, surgery or illness after another. Often times, we keep our heads down dealing with the medical crisis at hand and forget to think about our marriage. Sometimes, we forget to place God at the center. 

On my Catholic Tea Party Hippie blog, I just wrote about a family who lost their health insurance because of Obamacare. I cannot imagine it, though the reality scares me. I'm offering an extra prayer for those folks today- we know there are thousands of people losing their insurance, many with chronically ill kids. Pray for their situation to improve, but also pray for their marriages. The stress can be unbearable.

NC Right to Life 40th Anniversary Banquet

We need two more people to fill our table at the 40th Anniversary banquet! If you'd like to join us, please register and let me know so I can add you to our table list. You can register here: http://ncrtl.org/online-registration-for-40th-anniversary-banquet/

The banquet is in Greensboro, NC the evening of September 28, 2013 at the Embassy Suites near the airport. We'd be glad to have you at our table! Lt. Gov Dan Forest will be there!

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!