May is always a crazy month. October is also a crazy month, but I seem to always remember that. The constant running around that is May, always sneaks up on me. I’ll document a bit of the madness for posterity and be sure to share a new Marian title in the process. I am a bit behind with my #31DaysofMary, but I’ll add more, backdating as I go so ultimately, even if it’s mid June when I’m finished, there will be 31 entries dammit.
1. Teddy made his First Holy Communion! I meant to write about it last week but….[insert excuses here]. He looked dapper all in white and I didn’t sob hysterically this time due to the fact that he was constantly acting up during Mass. Every time I tried to sit back and reflect on this milestone, he started whispering or trying to flail his arms around…just because. With Fulton, I still feel the effects of his diagnosis and every achievement overwhelms me with joy and gratitude. In Teddy’s case, he continually proves how this diagnosis will not hold him back from being a smart ass / hellion. I’m usually just glad / relieved when we reach a milestone and he doesn’t create a scene or destroy something.
2. Fulton had an MRI recently and I as I scheduled it I realized the script said ‘unsedated’. Wow. Okay. I didn’t remember agreeing to that but sure, let’s try to do an MRI of his entire spine in a tiny tube without knocking him out first. We arrived on time for our appointment, only to learn the procedure would be delayed due to a machine malfunction. Two hours later, he was finally wheeled back for, what I learned, could take up to two hours. They had movies for him to watch, but I was skeptical Fulton could lay still and not talk for the duration of the test. Having also heard numerous horror stories from adults who freak out and need to be sedated for their own MRIs, it seemed no small feat to expect Fulton to cooperate. But low and behold he did! No tears! No complaints! And most surprisingly, no talking!! And did I mention the delay meant he’d had no dinner? We got home late and celebrated with leftover macaroni and cheese.
3. So why the MRI you may be asking? Because Fulton will be getting spinal fusion surgery at Shriner’s Hospital in Philadelphia in September.
And it’s okay! People keep offering me condolences and I’m like, no, this was the goal. We knew he would eventually need back surgery to correct his scoliosis (caused by his all over muscle weakness). We hoped to put it off as long as possible through external bracing. Surgery at a younger age means inserting grow rods into the spine that need to be adjusted as the child grows, equaling more surgeries. We wanted Fulton to undergo as few surgeries as possible and by holding off until the fall (which he’ll be 10) we can go right to the fusion and, so long as all goes well, prevent the need for any future back surgeries.
In case you’re wondering, yes, Teddy will need the same surgery as well. He is stronger than Fulton in many ways, however he also has scoliosis.
If we didn’t correct the curvature, the external bracing would eventually stop working and Fulton would sit crooked. His lungs would get smushed inside his rib cage and in the event of a respiratory illness, he’d be at greater risk of pneumonia, since it’s harder to clear out smushed lungs. A lot of SMA deaths are related to respiratory illness so, you can understand why this is sort of important.
Obviously there’s risks. We’re making numerous extra doctor appointment to get clearances. The surgery will take all day and he’ll be in-patient for at least a week. The recovery will be difficult, for him physically and me emotionally. I’m trying to be optimistic about the whole process because, wow, we made it. He’s going to be 10! He’s doing well! Spinraza has been amazing! We’ve got the best doctors in the world taking care of him! But come crunch time, I know it will be difficult, especially as the hospital has poor wifi.
4. I had hoped to schedule the surgery over the summer, but there were already to many other patients in the queue ahead of us That will mean Fulton will miss the beginning of the school year at his new school. Teddy will continue at the local elementary, but Fulton will be starting at a new special education school closer to home. Last year when we toured the facility, the program was housed in an old Catholic girls school. I wasn’t happy with the accessibility and additionally about the staff’s ability to safely evacuate everyone in an emergency. But beginning next fall, this school will be located in a new one level, completely accessible building less than 30 minutes from our house. Fulton is excited to switch schools so hopefully the transition next fall will go well.
5. I haven’t written about orphan hosting in ages, but I am so humbled to know of two families that are hosting orphans this summer who first learned of hosting through my family’s efforts. One family is local and attends our parish. I’m looking forward to meeting their host children in a few months. The other family I have not met personally, but Maria was kind enough to reach out and offer her translating services to me when I struggled MIGHTILY during our hosting. She and her family are hosting an older boy and they could use your help financially. Please consider donating HERE. And if you first learned about hosting through my blog and decide to host orphans, please let me know! We are all called to help orphans, but I understand not everyone can adopt domestically or internationally. But by helping other families shoulder the financial burden of hosting and adoption we are ultimately making a real difference in these children’s lives.
Also- Erin links up weekly and her family is adopting internationally after hosting! But there’s been some twists and turns in their journey! I invite you to read her posts and learn about her family’s experience.
6. I went to the movie theater alone yesterday and saw Avengers Infinity War. The rest of my family went to see it opening weekend (while I was in NYC with Jen) and were tired of not being allowed to talk about it in front of me. Besides the thrill of reclining and watching a movie undisturbed, I thoroughly enjoyed it. Now instead of arguing about ‘The Last Jedi’ or the subtleties of ‘Black Panther’ we can discuss the finer points of Infinity War until part two comes out in a couple of years.
Our Lady Queen of China
Apparition of Our Lady which appeared in Dong Lu, China during the Boxer Rebellion, April 1900
The Boxer Rebellion was an anti-colonial, anti-foreign, anti-Christian uprising that took place from 1899 to 1901 in China. During this time, many Christians were killed and in April of 1900, 10,000 soldiers attacked the Catholic church in Dong Lu and the small group of Catholics who lived in the surrounding area.
During the siege the pastor of the church, asked for the help of Our Lady and she appeared walking around the roof of the church. The soldiers fired on the apparition, before fleeing upon the appearance of a fiery horseman.
In thanksgiving, Pastor Wu commissioned an image of our lady dressed in imperial robes holding her son as a prince. In 1924 during the first synod of the bishops of China, this image was declared Our Lady, Queen of China and the people of China were dedicated to her in the same year. The church was made an official Marian shrine by Pope Pius XI in 1932.
The shrine was destroyed during WWII from Japanese artillery fire and not rebuilt until 1991. Pilgrimages continued until April 1996 when the Chinese government destroyed the site, taking with them all images of Our Lady. Thankfully, the orignal image of Our Lady Queen of China was hidden and recovered and is still used by the underground Catholic church in China today.
Prayers to Our Lady of China
Hail, Holy Mary, Mother of Our Lord Jesus Christ,
Mother of all nations and all people.
You are the special heavenly Mother of the Chinese people.
Teach us your way of total obedience to God’s will.
Help us to live our lives true to our faith.
Fill our hearts with burning love for God and each other.
Stir up in our youth an unconditional giving of self to the service of God.
We call on your powerful intercession for peace, reconciliation and unity among believers
and the conversion of the unbelievers in China and throughout the world,
for God’s mercy is our only hope.
Our Lady of China, Mother of Jesus, hear our petitions and pray for us.
More Marys on the way! But now, share your week! Write it down then link it up below! I look forward to reading your posts!
This site uses Akismet to reduce spam. Learn how your comment data is processed.