Musings of a Marfan Mom

September 21, 2010
by marfmom
3 Comments

How to Make a Vinyl Board

You can customize these to say whatever you’d like. We have one in M’s room that says his name in bold and “Child of God” in cursive overlaying that. I made some for family with their last names on it and “established” with the year of their wedding (like, “The Jones Family, est. 1992.”) My brothers-in-law have boards with their school abbreviation and mascot. The ideas are endless!

This is a picture of the first one I made, a Christmas decoration. It’s ridiculously easy to do, I promise!

Materials:
1) Vinyl that reads “Christ”
2) Vinyl that reads “Wisemen still seek Him”
3) Board
4) Paint
5) Credit card
6) Epoxy or other spray adhesive
7) Toothed hook thingy (yah, I’m feeling technical) to hang the finished product

Directions:
First, you order the vinyl. Some stores will also sell you the board (which is how I got mine). If not, you can find smaller boards than this at Michaels; I am not sure where to get one my size. I would recommend the online company where I did mine, but she recently closed down 🙁 If you buy your own wood, make sure you give the measurements to the person cutting your vinyl so you can be sure your wording is the right size.

Sand down your board if necessary.

Paint the board (make sure to paint the sides, but it’s not necessary to do the back) as many coats as necessary. While the paint is drying, prep the vinyl. Do this by firmly rubbing a credit card or similar shape of plastic along the back of the vinyl, always in the same direction. This will help the vinyl separate from its paper all in one piece.

Once paint is dry, carefully adhere the vinyl to it. You can use the credit card to smooth out bubbles. Repeat with the 2nd phrase if applicable.

Go outside and spray the board evenly with epoxy glue spray.

Once everything has dried and set, attach your hook to the back of the board. You’re done!

Helpful hint: When using two different lines of vinyl, I highly recommend using the darker color as the bottom line of text.

September 21, 2010
by marfmom
1 Comment

How to Make a TuTu

I was given the idea for this craft from this website. I take no credit for it. My friend Amberly helped me with the directions as well.

Materials:
1) 1 roll of each color of 6” tulle (25 yard rolls); I suggest 2 colors
2) 1 pack of white elastic (3/4” long); how much elasic you use depends on the size of the child you’re making a tutu for: double the size of their waist.

Directions:
Cut the tulle into strips about 26” long.

Cut the elastic and sew into a loop.

Alternate tying on strips of each color. Click the above link for a great visual on how to tie them. Do not tighten them much until you’ve completed the tutu so that you can shift and even out strips as needed.

This is probably the easiest craft I’ve ever done. It took me about 40 minutes to complete one tutu, while I watched TV, and I was pretty slow.

September 20, 2010
by marfmom
16 Comments

Eye of the Tiger

There are a few rites of passage in pregnancy: morning sickness, weight gain, cravings…and stretch marks. We dread stretch marks. Websites tout diets to prevent them, creams abound to stop or hide them, and celebrities brag about avoiding them (though we all know the ragmags are just airbrushing them out!).

Having Marfan syndrome means I’ve had stretch marks for as long as I can remember. The disorder causes them to appear in all sorts of weird places: my shoulder blades, hips, knees, shoulders, legs, lower back, etc. without normal reasons like excessive weight gain. When I got pregnant with the Menininho, I knew there’d be no preventing lots of stretch marks from taking over my body. My motto became “no one does stretch marks like a pregnant Marf!” I stand by this, by the way. I got my first purple streaks during my 5th week of pregnancy, before I’d even gained weight. By the time my son was born, I had marks 1/2” wide and so deep I’m surprised my skin didn’t rip open and expose the baby himself.

I was curious whether I’d get additional stretch marks with this pregnancy. I’ve made it all the way to week 28 before the first new one has appeared. You might think I’m bummed out about the prospect of additional claw marks, but I’m not. Here’s why.

I work with the teens at the National Marfan Foundation and stretch marks come up in our conversations. One of the teens shared her philosophy with me shortly before this year’s conference. Stretch marks aren’t really stretch marks, she told me. “They’re tiger stripes, and that makes them awesome.” And if you think about it, it makes a lot of sense. Tigers are powerful, beautiful animals and their stripes are what sets them aside from other cats. They scream “I am strong.”

And we are! Those of us with Marfan, we are strong people to deal with the kind of hardships, both physical and emotional, that this illness tosses us. And can anyone doubt the strength of a pregnant woman? We grow another one of us for months, then birth it.

So, I’m not embarrassed or ashamed of my “tiger stripes.” Rather, they’re a permanent reminder that I’ve had the opportunity, the gift, to combine two great parts of me: Marfan & motherhood.