Saturday, November 16, 2013

God's Got This

Sometimes in the midst of the insanity that is my life, I forget that God is always by my side. I know He's never left my side, though I don't always feel His presence. My youngest has another surgery on Tuesday. I'm a bit stressed- they will be cutting through a bone!

He came in while I was listening to "Whom Shall I Fear (God of Angel Armies)" - he listened to the part that says, "I know who goes before me, I know who stands behind, the God of Angel Armies is always by my side..." We got to talking and I said, "I've been asking God's angels to surround and protect you during your surgery." He replied, "What if it's just one angel? Because compared to us, One Angel is an army."

Here's the song- this guy is awesome!

We've had quite a year. I suppose it is no different than the 16 years of chronic illness that came before it, but it was crazy, nonetheless. With my trips to DC, I've not had time to blog on this blog as often as I'd like. Homeschooling has been difficult this year, though we got one off to college. We've really had medical challenges this year. I've been wiped out.

S had a skin infection on his foot. 4 days after finishing the antibiotics, his other great toe became infected. Then, yesterday, the other toe again! The first infection, we could not see an entry wound. We assume something got under the nail - but the bottom of his toe was swollen and red to the point he could not walk on his foot. The second toe- the infection stems from the nail bed, but we never could see an entry wound.

We've had preop and all sorts of appointments in between. Someone stole our credit card number this week and it was the card linked to the blood product my son receives weekly- we're out and they couldn't change the card! Insane!   With surgery coming up, I've been stressed out.

I needed this song for the upcoming week...I also needed the reminder from my son that, compared to us, one angel IS an army. God be blessed!

Saturday, November 9, 2013

Bone Marrow Biopsy Day

This is a video I put together from pictures and videos from my boys' bone marrow biopsy day- it's got some fun stuff, but has graphic bone marrow biopsy pics at the end. As of 2013, each of my boys has had over 25 BMBs each.

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:

Tuesday, October 22, 2013

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.

Monday, September 9, 2013

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:

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!

Wednesday, July 31, 2013

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! 

Tuesday, May 28, 2013

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.

Monday, May 6, 2013

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!

Monday, April 29, 2013

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.

Shwachman-Diamond America on Facebook

Shwachman-Diamond America has a new page on Facebook! Please like their page that can be found here: Shwachman-Diamond America on Facebook.

Those of you who know me know that one of my goals is to raise money for research to find a cure for Shwachman-Diamond Syndrome. Please help us raise awareness of this rare disease by liking our page on Facebook and sharing it with your friends.


Sunday, March 31, 2013

Easter Sunday

In this crazy SDS/Mito world we live in, we have so many opportunities to see God at work. Some things are small, others are big. Last night before we left for Easter Vigil, I overheard a conversation between Matthew and Joseph. Chris had played basketball for an hour or so with Joseph, so his wrist was really hurting. Matthew was asking him questions about the pain and trying to freak him out about the surgery (as any good big brother will do). Joseph calmly explained exactly what the doctor told us and used the same hand graphics the doctor did in explaining why he needed surgery. Matthew kept going on and on about how painful it was going to be... and Joseph started to worry about the pain. That's when he looked at me and asked, "Will it hurt forever?" This may seem small to you, but I think it was God giving me the right thing to say. I said, "When you broke your other arm, did it hurt forever? Do you still have pain?" Joseph replied, "No, it doesn't hurt any more." I said, "Think of the surgery like your broken arm. It's going to hurt, but once it heals you will no longer have pain."  Why I didn't think of that on Tuesday when he was freaking out about what the doctor told us is beyond me. I have to assume God's timing in perfect-- He gave me the right words at the right time, when Joseph was ready to hear them.

Joseph seems to be accepting the fact that surgery is in his future. God is good and I am blessed to be a witness to His working in the boys' lives- Joseph has taught me  so much- he's 15 and he has always been so good about offering his suffering up to Jesus. Before one particularly nasty/painful surgery, after we prayed, I reminded him of some people he could offer it up for and he said, "Oh, I was already offering it up for the souls in purgatory, but I can add them, too."

It's been quite a journey dealing with SDS and Mito the last 16 years. We've seen God working through it all. God is faithful. God is good. As we celebrate the Lord's resurrection today, we are thankful for all of His wonderful works-- the big and the small. He is risen, Alleluia!

Wednesday, March 27, 2013

Here We Go Again

Every. Single. Time. I am blown away. We expected the MRI to be normal yesterday and it wasn't. J needs surgery.  God's will be done. J told me last night that he is praying for a miraculous healing. We,, too.  

Meanwhile, I'm very stressed because of the toll Obamcare has already taken on our family.

Friday, March 22, 2013

The Battle of Guilford Courthouse Reenactment

This past weekend, my husband and son participated in the reenactment of  The Battle of Guilford Courthouse. This battle was a turning point in the war. The British casualties were so heavy, that Cornwallis left the Carolinas and never returned. This battle enables the American Victory ant Yorktown.

My son practicing firing a musket

Thursday, February 7, 2013

Sean Makes a Cake

Sean decided to make a cake. A layer cake. He did an excellent job!

Tuesday, February 5, 2013

Shwachman-Diamond America Awards Research Grants

I'm excited to announce that Shwachman-Diamond America has awarded two research grants. One for a SDS MDS (leukemic transformation) study and a second for a SDS bone density study.

I wear many hats! Political activisit, homeschooler, mom, nurse, and I fight to help find a cure for Shwachman-Diamond Syndrome. Thankful for the donors who support SDA and its mission!

Thursday, January 31, 2013

Belmont Abbey

I've been so bogged down in fighting Obamacare (we have two chronically ill kids) that I rarely have time to post on our family/homeschooling blog. My oldest was accepted into Belmont Abbey and we trekked down there last week.  We need prayers!  Whew... it is expensive and with our medical bills.......

If you are interested on our ongoing battle with Obamacare and how it affects our children, please visit my Catholic Tea Party Hippie blog

Tuesday, January 15, 2013

Text A Prayer Request

NEW YORK (CNS) -- Often, prayer intentions are offered with hands folded, but a new service allows hands and fingers to move freely -- provided a cellphone is handy.

The New York-based Holy Name Province of the Franciscans has started a service it calls "Text a Prayer Intention to a Franciscan Friar."

The service debuted in January with the new year.

Here's how it works: Text the word "prayer" to 306-44 and hit "send." Senders will then receive a welcome message inviting them to then send in their prayer intentions. Senders will receive a text in reply stating that their prayer has been received and will be prayed for.

The intentions are received on a website, and will be included collectively in the friars' prayers twice a day and at Mass.

"With technology changing the way we communicate, we needed to offer people an updated way to ask for prayers for special intentions and needs either for themselves or others," said a Jan. 8 statement by Franciscan Fr. David Convertino, executive director of development for the Franciscan Friars of Holy Name Province.

"We have been working on this for some time and it's a great way to bring in the New Year," Father Convertino added. "If the pope can tweet, friars can text!"

Pope Benedict XVI launched his very own Twitter account in mid-December.

The Holy Name Province is the largest U.S. province of the worldwide Order of Friars Minor, with 300 members serving throughout the East Coast in college, parish, social service and urban ministry, with some on overseas assignments as well.

However, with cellphone technology and access virtually universal, the province's range could be even larger.

"This is one more way of reaching people who ask us to pray for them," Fr. Convertino said. "We hope it can reach people all around the globe."