Musings of a Marfan Mom

January 6, 2014
by marfmom
1 Comment

Kids, Self-Advocating

I believe that self-advocating is vital to people with disabilities, in whatever way they can, and that parents should start finding ways for their children to do so from a young age. Obviously, this is going to look different for every family, but I’ve seen firsthand the difference in teenagers who feel confident in handling their care, and how that affects their self-view, as compared to teens who don’t. So, this idea of allowing the boys to slowly take over aspects of their care has been at the back of my mind before they were even born.

Sometimes as parents we can underestimate our kids, and I was very guilty of that yesterday. Learn from my mistake!

In our church, children’s Sunday school classes are done by birthday. Classes change the first Sunday of January. From 18 months to 3 years, children are in nursery. Everyone who is 3 on Jan. 1 start the children’s Sunday school program. When M started the program last year, I spoke with his teacher before the first class, just to give her a heads up about his diagnosis and specific needs. I also introduced M to her ahead of time. Makes sense, right?

I did the same this year. Called his new teacher, introduced myself, and then explained about M’s headphones and his chewy. I wanted to be sure no well-meaning teacher would try to keep him from either. M isn’t yet 5, if I didn’t do it for him, who would? (Besides Mark of course.)

Flash forward to yesterday. M and I were visiting his new classroom during the main church service (so that the classroom would be empty), and ran into his new teacher in the hallway. She introduced herself and M said something to the effect of, “Hello. This is my chewy. I chew on it. You will let me chew on it in class.”

Boom. Unprompted, he identified his own needs and advocated for himself to a stranger. I was so proud!

So, lesson learned. Next time, I’ll give him the space to take the lead first, and follow up afterwards instead of the other way around.

Before new classes started

January 3, 2014
by marfmom
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Friday Favorites

It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle

December 31, 2013
by marfmom
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2013 in Review

I’m very, very happy to say goodbye to 2013. Here’s a recap of some of the bigger moments from the blog this year.

January: It started off rather difficult with continued rejections for synagis, the RSV vaccine that J needed. On the brighter side, we prepared for and passed our adoption homestudy.

February: We got notification that we were officially approved for adoption and our profile was live on our agency’s website! So exciting! I was flaky and was late doing M’s class birthday party, but he had a great Tinkerbell party for his classmates the next weekend. J was also diagnosed with Childhood Apraxia of Speech.

March: J was able to get a spot at the hospital’s outpatient feeding clinic, to deal with his aversion to eating solid food. I was also invited to give a grand rounds presentation to the doctors and therapists there, which took place at the end of the month. Then came a big surprise: hernia surgery! All that time recuperating afterwards led to a post of adoption concerns.

April: April was a very busy month. We said goodbye to J’s crib, and a debate online turned into a discussion on the blog about People First Language and the term “Marf.” My trip to NYC for the Marfan gala and board retreat was fun, but I had the most outrageous cab ride! Our family attended an adoption conference (and I got involved with our adoption agency’s family support board) and registered with Project Cuddle as a hopeful adoptive family. J received an AAC evaluation that brought amazing results, and Amy from AnkTangle and I combined our Friday Favorites.

May: May 1st I said goodbye to my college roommate, one of my best friends. A few days later, an anonymous donor sent us an ipad for J to use to communicate. He took to it immediately and his therapists agree it’s played a huge role in him learning to talk. Mothers’ Day weekend we received our first adoption scam email. J had his 5th sleep study, my mother graduated with her PhD (!!!!), and J, at nearly 2.5 years old, got his first haircut.

June: In June we attended the wedding of good college friends, there was a controversial mention of Marfan syndrome in a major movie, and I had a nostalgic stay in my childhood home.

July: J started taking losartan, which technically happened in June but I didn’t blog about it till July. We had a fun 4th of July at home. I asked people to help support me in a bid to get a scholarship to Mayo Clinic’s social media in medicine conference. (I placed 2nd in terms of votes, but did not receive a scholarship.) I also blogged about therapy burn-out.

August: August started with the annual Marfan conference, where the National Marfan Foundation released their new name (The Marfan Foundation) and logo. J was diagnosed with trichotillomania (what’s an additional diagnosis between friends, right?), and I mused on the medical advancements made in the 20 years since my Marfan diagnosis (happy anniversary to me!). I also gained another sister, when Mark’s brother got married.

September: September sucked. Mom’s cancer came back, this time it metastasized. I spent a couple of weeks helping her out. Once I got home, I had to find a way to talk to M about cancer. On a lighter note, M brought a pretty…unusual…item to show and tell.

October: J started his IEP evaluations with the school district. We FINALLY, after 2 years, said goodbye to his dysphagia and with that, his thickened liquids. We took some family outings outdoors, including updated family photos for our adoption materials. I also wrote about the double-edged sword of sharing a Marfan diagnosis with J.

November: I pled to medical professionals to be honest with their patients – especially the kids – after a bad experience for J. J got a great report from his cardiologist, which was a relief after his growth in June. I also spent some time with my mom and sister in NC.

December: J turned 3. I also asked parents of typically developing children to be more mindful of how they are teaching their children about disability. The boys and I are in NC for the holidays too.

Thanks for sticking with me this year. I know I haven’t updated as much in the last few months, as I’ve been juggling a few family responsibilities. That should be settling down soon, so be expecting new posts with this new year 🙂

I wish all of you a better, happier New Year!