Musings of a Marfan Mom

November 2, 2016
by marfmom
2 Comments

Review: Spot 12

Spot 12: The Story of a Birth is a graphic memoir by Jenny Jaeckel, of her daughter Asa’s time in the NICU. Jenny was planning a home birth, goes to the hospital for an ultrasound, and leaves five months later. This is a story of how an unexpected hospital stay can turn your world upside down, and how “do no harm” is more complicated than we would like to believe.


spot-12-cover
Although none of my children have had a NICU stay this long (Miss R was there for a little over a week), there were definitely aspects of Jaeckel’s story that I could relate to. I also found myself wondering repeatedly if this was how my mother felt during my NICU stay and repeated hospitalizations (I spent more of my first 2 years in the hospital than out of it).

At one point Jaeckel writes about a nurse who didn’t want her to touch Asa and how it caused some contention. I had a nurse like that in Miss R’s NICU. You’re in this high-stress situation already with having a sick child, you’re trying to help them get healthy, and bond with them, and respect the professionals, and then you get conflicting instructions from said professionals and it can just feel like Too Much.



There’s also this part where the author writes, “You have to let your baby go, into the hands of the surgeons, and her own destiny, whatever that is. When you have a child you give birth to your own heart. Your own heart goes under the knife.” J has only had outpatient procedures but I can’t think of a more true statement than this. That moment your child is laying on the gurney, being wheeled down the hall away from you…Jaeckel captured that moment perfectly.

Not to spoil anything, but you’ll see how medicine is an imperfect science, and measures that should be healing can actually be problematic. This is exactly what parents of medically complicated children worry about. When I was a child, I’d have one surgery, only to require another 2 to fix troubles that arose as a result of the first. Even now, as I’m preparing for another surgery, the surgeon gave me some general statistics on the procedure, then cautioned, “but I can’t assess YOUR risk percentage.” Being a parent, and a surgeon, is about trying to make the best decisions possible while realizing there is only so much that can be controlled. That is really difficult to acknowledge to yourself.

The one thing that threw me initially about Spot 12 is that all the characters are animals. I’m curious to know if there was any particular reason that Jaeckel chose this way to illustrate her graphic novel. It’s kind of cool! 

If you haven’t figured it out already, I highly recommend Spot 12 to anyone who has dealt with medical issues in themselves or their children, especially if there was a NICU stay. That said, it may be triggering, so proceed with caution.

You can buy Spot 12 from Amazon and Barnes and Noble. You can connect with the author on Twitter or her website.

* I was given this book to review, and no compensation for my words. All views are my own.

September 26, 2016
by marfmom
1 Comment

Delaney’s Story

I’m excited to share a post from one of my former teen council members, Delaney. Delaney has Ehlers-Danlos syndrome and is a force to be reckoned with.

As cliché as it sounds, Ehlers-Danlos syndrome is like a box of chocolates. Some days you have the energy to attend a rock concert, buy a new puppy, and go swimming with sharks. Other days you cannot make it out of bed. EDS is a perplexing and painful puzzle that constantly tests your faith. But those days where you have enough spoons left to conquer the world and come out on top? Those days make this a life worth living.

My most recent struggle has been the diagnosis of neurogenic thoracic outlet syndrome, a rare nerve disorder commonly found in us zebras. When I was younger, I joined a swim team after learning it would help my joint pain, and have continued until just recently. Unfortunately, last year I started having severe arm and shoulder pain, and I would lose feeling in my fingers. Not understanding what was going on, I saw an athletic trainer and physical therapist who tried to strengthen my weak back muscles. Then, at a short practice this summer, I lost feeling in my entire arm. Mystified and teary-eyed,my mom and I saw an orthopedic specialist who diagnosed me, and explained that the pain and tingling happens because the nerves near my collarbone are compressed. She suggested physical therapy.

I have been in physical therapy for some type of weakness or imbalance since I was little. I have also been in physical therapy for my shoulder since the pain started, so her suggestion to continue PT left me feeling hopeless. Not to mention ibuprofen had decided to stop helping the pain. Unable to do any type of physical activity, I wanted to scream. When I was younger, I had to quit Irish Dancing. Now swimming? Unbelievable.

Nevertheless, for every hundred bad days, there is one good day.

My ray of light came about a week ago, after auditions. I am an oboe performance major at Lawrence Conservatory, and, despite the joint pain I have, performing gives me a rush like no other. This year, I earned section leader of both our wind ensemble and orchestra, an honor that left me speechless. Despite everything, despite having to quit swimming, despite unhelpful doctors, despite my physical therapist giving up on me, despite crying episodes at school, despite dropping conducting class, I have a silver lining.

Yes, there have been days when the pain is so bad I cannot practice. There are days when I lie in a lump, crying because I feel useless. There are days when I want to give up. But, I don’t. I am here for a reason, and even if the reason is to make one person smile, I will take it. There are always people who love me, and are willing to help me when I am down, and I want to be there for them as well. Just because things do not go the way I plan, I will always keep moving forward. There are still sunsets to watch, new things to learn, puppies to pet, scary movies to scream at, friends to make, people to fall in love with, music to make, and lives to change. I want to be here for it all.

14237659_1334436769901768_8275079969144468198_n

Delaney is a 20 year old student at Lawrence University, double majoring in Gender Studies and Oboe Performance.

September 20, 2016
by marfmom
3 Comments

M & J Rate Emmys Fashion: 2016

Back by popular demand, M and J critique this year’s Emmys best and worst (with some occasional commentary from their parents)!

Priyanka Chopra, in Jason Wu:


M: AAAAHHHH! BLOOD BALL!
J: The straps remind me of a superhero cape. I wish I had a shirt like that!
Mark: It’s like she put her head through the wrong hole!

Sarah Paulson, in Prada:


M: Plant…ish.
J: I like the green beads, because green is my favorite color. My favorite shape is rectangles, so I like the earrings. She kinda looks like a rectangle, too.

Kerry Washington, in Brandon Maxwell:


M: I hope the baby likes what you’re wearing.
J: Oooooooooooooooooooooo! I really love the cape! I like that her belly is showing.

Felicity Huffman, in Tony Ward Couture:


M: Her dress looks like it has a pile of gold, waiting to be robbed. Her earrings look like tiny angels that got trapped on her ears.
J: Her dress is so fancy, it has its own skirt.
Mark: She’s wearing a doily.

Anna Chlumsky, in Christian Siriano:


M: WHOA. (Moments of silence) Is she wearing a sweater? It’s not winter!
J: I hate this. It looks like a big jacket, and I hate jackets. I. Hate. Jackets.
Maya: I think it looks like a giant curtain tongue is eating her.

Kristen Bell, in Zuhair Murad Couture:


M: This looks like a spring dress to me, not an end-of-summer dress.
J: I like the flowers and I like the pinkness.
Maya: I love this dress, especially for her, but I’m disappointed by her hair, or maybe it’s her nude lip…something is missing.

Caleb McLaughlin, in a custom tux:


M: This dude? L. O. L. He looks really cool! He’s got gems on his bowtie!
J: I’ve never seen a tuxedo like this! I want a crystal bowtie!

Claire Danes, in Schiaparelli Couture:


M: Oh! Well, THAT’S the pile of gold! A gold fountain!
J: She looks like a giant block of gold, with gold skin.
Maya: I have feelings about gold dresses for award shows: trying too hard. It looks like she has 3 boob holders, and she spent two days too long in the tanning booth.

Emily Ratajkowski, in Zac Posen:


M: Wow she looks really cool! Look at her mouth and her eyes, just staring off!
J: I think that woman is a mermaid.

Sarah Hyland, in Monique Lhuillier:


M: Ok number one, she’s got a great smile on her face! I’m glad you’re wearing that! Number two, it’s like, a butterfly with flowers on you.
J: You forgot your dress!
Maya: If the flying nun went to the Emmys

Angela Bassett, in Christian Siriano:


M: LEMON!
J: She looks like a giant lemon.

Mandy Moore, in Prabal Gurung:


M: It’s like she’s an orange juice bottle with arms and a head coming out of the bottle.
J: And she’s a giant orange!
Maya: It looks like someone peeled a tangerine then took the swirly peels and put them back on the tangerine wrong.

Viola Davis, in Marchesa:


M: It looks like she has a chipotle burrito in her hand.
J: I like the glitter on it.
Maya: A Marchesa gown should not have the darts showing.
Mark: That is just an excellent dress.

Terrence Howard:


M: I’m glad you learned about opposites, because your bowtie and your tuxedo are a great example of opposites.
J: I like the pattern of his jacket but I wouldn’t wear it, but I wish I could have one like that. I mean, I wouldn’t wear a grownup sized one.
Mark: I want one.

Amy Poehler, in Pamella Roland:


M: It’s like she has vines all over her.
J: Is she wearing grass?
Maya: Geriatric mother-of-the-bride meets swamp lady

Giuliana Rancic, in Georges Chakra:


M: She’s a giant pink cotton ball.
J: Her dress is so thin I can see inside!

Niecy Nash, in Christian Siriano:


M: Her dress looks like marshmallows all melted together! I could EAT her dress!
J: She looks like a cloud.
Mark: It looks like she walked out of the bathroom without noticing there was toilet paper stuck to her.

Constance Zimmer, in Monique Lhuillier:


M: Ugly.
J: I like the contrast between the white and the pink.
Maya: Your lips, clutch, and dress should not all be the same shade of pink. Also, mushroom hair.
Mark: Very symmetrical. I like how symmetrical it is.
Maya: You would, Mark.

Laura Carmichael, in Delpozo:


M: It’s like a yellow drink machine pouring out grape powerade.
J: I like that the skirt and top are not connected.

Best Dressed:
M: Sarah Hyland
J: Claire Danes
Maya: Kristen Bell
Mark: Sarah Paulson, Viola Davis, and Terrence Howard

Worst Dressed:
M: Constance Zimmer
J: Giuliana Rancic
Maya: Anna Chlumsky
Mark: Anna Chlumsky

What are your thoughts? Any favorites that we missed?