We made our yearly trek to Marfan Disney World recently. If you've never heard of the place, you are lucky, but you can learn all about it in this post . As always, we planned the visit for a day off school so my kids wouldn't miss a school day. As my friends plan trips to the zoo, bowling alleys, and other fun kids attractions on their days off school, ours are often filled with specialists appointments. Rarely is there a vacation from school when one of the kids doesn't have some type of appointment.
So on the second Friday of March we loaded into the car for the yearly trek. I was prepared for bad news. Last years trip was so great, and it seemed like too much to hope for that this year would bring good news too. And if I'm honest, I try every year to prepare myself for "bad" news. It's just a part of having kids with this syndrome. The possibility of surgery, the probability of aorta growth, and the potential for every visit to be life changing. We live our lives with the millimeters constantly in the background, never far from the fact that inevitably someday it will be one of my babies on that operating table instead of my husband, and we pray that day never comes, or at least not for many, many years.
This year our trip seemed to fly by. For the first time both giraffegirl and giraffeboy were completely cooperative during their echos, so they went quickly. During Giraffeboy's echo I actually managed to kind of follow the measurements, so I had a sense of where he fell before our doctor came to chat. The number seemed bigger to me than I remembered from last year, so I was a bit anxious before she arrived. But then she was there. And this year was our very sunniest year yet. Giraffeboy's aorta had grown 2 millimeters, but then giraffeboy himself had grown significantly this year, so when all was said and done, his z score remained stable below 2. And Giraffegirl's aorta had remained the same, despite her body growing this past year (she's now a big 6- practically grown up if you ask her), so her z-score actually hit right at 2. For you non-marfs out there, unfamiliar with z-scores, anything under 2 is considered in the "normal" range. And although Giraffegirl's chest slightly indents, neither kid has any other chest or spine issues. Sunny doesn't begin to describe this trip. It was like those rare perfect days, sunny and 70 with no humidity. The kind we get only a few days a year in Minnesota, but that draw everyone outside to enjoy it. The rest of the day passed in the post visit bliss.
It wasn't until Saturday that I really thought about and appreciated the significance of these numbers. I was cleaning out our bill holder and came across the folded heart paper from our visit in 2011. In 2011 Giraffeboys z-score was 2.46, down from 2.7 in 2010. Giraffegirl's 2011 was 2.39, down from 2.5 in 2010. Seeing these numbers compared year after year, continually decreasing as their bodies grew stopped me in my tracks, and I said a prayer of gratitude.
This still amazes me, writing this. We have been incredibly lucky, beyond blessed. But there is more here too, and I would be neglectful to not share it, as I feel it is a major part of our story. Our worst trip to Marfan Disney World took place in February 2009. Both kids were quickly approaching a z-score of 3, just barely not "bad" enough to qualify for the losartan vs. atenolol study. Although we believe in God, believe in prayer, neither Giraffedaddy or I had prayed much about marfan syndrome, in regard to his or the kids health. How do you pray for a cure for the incurable? And we were still living in the naive bubble of our families version of this was "pseudo" and not nearly that big a deal. Looking back, I recognize that denial, but I truly didn't then. But it's August where it all changed. I've talked about attending the NMF conference that year in past blogs, about how we learned the truth about where giraffedaddy's aorta was at. Right after conference that year is when we started really taking praying for marfan syndrome seriously. I have had conversations with my pastor about this many times, about praying for stability instead of cures, praying for strength to handle whatever this brings. This praying started in the later half of 2009. Our 2010 visit was the first visit where the kids numbers went down, and as you know, they have continued to decrease every year since. Our kids aren't on losartan, we've left them on atenolol waiting for final results from the study to come out, not worried about not switching early because for our family this drug is currently working. But I don't believe it is just the drug. I believe prayer has played a large part in this. I am grateful our prayers are being answered about this. And I pray for stability for our many friends and even strangers out there with marfan syndrome who are watching their millimeters too.
Wednesday, March 27, 2013
Monday, March 4, 2013
The Liebster Award
The Liebster Award
Confession- I am not the best at keeping up with all things computers. I get bored easily, don't like to sit in front of a screen, and manage to procrastinate too easily. It's why I don't blog on a regular schedule (well that and I really wanted to focus on marfan issues, and thankfully not every day for us is filled with big ones. If and when that happens I'm going need a lot more therapy, or maybe more wine? Both? Let's just hope it doesn't happen!) So, imagine my surprise when I am finally catching up reading my favorite blog, Musings of a Marfan Mom, written by my friend, Maya, and see my blog listed for an award. Thanks, Maya! Wow! I've read Maya's blog for a long time, and her willingness to share with all of us in the marfamily her experiences was one of the things that finally inspired me to try this blogging thing as a way to share my family's marfan experience. I really am honored to have been chosen by her.
So the award comes with some tasks that must be done:
1) a shout out to the person who awarded it to you. Thanks so much, Maya! Thanks for not only sharing your experiences in your blog with all of us, but for also being available to answer questions about marfan syndrome, and for all the work you do in the marfan community and with the NMF! I am so grateful!
2) Pass the award on to 7 other bloggers that you love. In no particular order:
Finding Joy My girlfriend had posted one of her blog entries on Facebook one day, and I'm now addicted. I love the positive messages she has everyday. And I can relate to trying to balance housework and kids and the pressure to have everything be perfect. I've never read one of her blog entries that I haven't finished feeling inspired.
Prayers In Action My friend Cindy writes this blog. I think what I like most about this blog is it reflects so much of who Cindy is. She is one of the most positive, friendly people I have ever met. She always has a smile for everyone. It wasn't until I had known her for a fairly long time that I even knew she was sick, because she's a fighter, a get-up-and-go girl, and I can't even begin to describe how much I respect her. I love that she positively and honestly shows what it is like to live with cystic fibrosis.
Kidneys and Eyes I found this blog through Maya's blog and really enjoy reading it. I love her honesty, and it still makes me laugh that her tagline is "How the Other Julia Roberts Parents".
Maryah's page I know this isn't really a blog, but I think a caring bridge page is the same and should count. Maryah's parents words have made me laugh, cry, and her story has helped me keep in perspective what my kids have and what I deal with. Even though she lost her fight nearly 3 years ago, I still find myself drawn to this site to read, reflect, and remember. I hope I am half as eloquent as her parents in sharing our story.
In The Loop With Pam Pam is the pastor of our small church and has been a friend for many years. I love that she makes me think, really think, by what she writes. Her words often keep me grounded, and remind me how God works in both small ways and big.
Married to marfans I love her honesty, and her real life descriptions of what it sometimes is like. She makes me laugh. Enough said.
Tall Like the Sunflowers The first time I read her blog I cried, as I felt like it was my story. I've never even met Jaime, but I feel like she's a friend, as she travels this marfan road on a journey much like my own. She doesn't update this blog that often, but you can read her other blog and her answers to her Liebster award. Love her!
3) Then, I have to tell you 11 things about me.
1) I love doing jigsaw puzzles. The bigger the better, and I really enjoy the ones that drive others crazy, like the all black background, or the pile of pencils. And impossible puzzles are NOT impossible!
2) I have never been to the west coast. Getting there is on my bucket list.
3) If I was stranded on a desert island for the rest of my life my food I would eat everyday is ice cream. And diet coke (that doesn't count, it's not a food).
4) I aim to read at least 100 books a year. I actually met that goal last year.
5) I can't watch tv without doing something else. This explains my collection of word puzzle books. It drives my hubby crazy!
6) I have 2 cats, even though I am a dog person. But they have grown on me, and I love them.
7) I love volunteering at my kids school. I should have been a kindergarten teacher.
8 ) I have a chemical engineering degree, but the closest I came to using it was teaching high school science.
9) My dad's side of the family is so big that we have to rent a church hall to have a family get-together. He is the middle child of 15. And they are catholic. Enough said.
10) My daughter is just like I was at age 6 in kindergarten. I call her my mini-marf.
11) I have never lived outside of Minnesota. And I have never lived alone.
Finally, I have to answer questions that Maya picked out:
1) If you could change one thing about yourself what would it be? My weight. Oh to be tall and slim :)
2) High heels, sneakers or flip flops? sneakers in the winter, slides in the summer
3) The Beach, the City or the Mountain? Mountain
4) Who is your favorite singer/group? Even though I love country, my favorite right now is Dawes
5) If you could vacation anywhere (expense is not a consideration) where would you go and why? Africa, on a safari, to see the giraffes!
6) Do you mind that my blog is sometimes snarky? Not at all!
7) What is one thing we would be surprised to know about you? I am extremely shy. In a group of people I don't know I am super quiet.
8 )Favorite, guilty pleasure, TV show? Once Upon a Time. Love it!
9) Favorite book or author? Stone Fox by James Gardiner. Or anything by Anna Quinlan
10) Do you admit to having a favorite child? Nope. (Although I tell them I have a favorite boy and a favorite girl)
11) If you could replace your life with one from the Disney Channel which show would you pick? We don't watch Disney Channel shows. So I have no idea!
I’m going to be lazy and say if you won the award from me, just answer the same questions that Maya asked, but change #11 to If you could replace your life with one from any tv show which show would you pick?
1) I love doing jigsaw puzzles. The bigger the better, and I really enjoy the ones that drive others crazy, like the all black background, or the pile of pencils. And impossible puzzles are NOT impossible!
2) I have never been to the west coast. Getting there is on my bucket list.
3) If I was stranded on a desert island for the rest of my life my food I would eat everyday is ice cream. And diet coke (that doesn't count, it's not a food).
4) I aim to read at least 100 books a year. I actually met that goal last year.
5) I can't watch tv without doing something else. This explains my collection of word puzzle books. It drives my hubby crazy!
6) I have 2 cats, even though I am a dog person. But they have grown on me, and I love them.
7) I love volunteering at my kids school. I should have been a kindergarten teacher.
8 ) I have a chemical engineering degree, but the closest I came to using it was teaching high school science.
9) My dad's side of the family is so big that we have to rent a church hall to have a family get-together. He is the middle child of 15. And they are catholic. Enough said.
10) My daughter is just like I was at age 6 in kindergarten. I call her my mini-marf.
11) I have never lived outside of Minnesota. And I have never lived alone.
Finally, I have to answer questions that Maya picked out:
1) If you could change one thing about yourself what would it be? My weight. Oh to be tall and slim :)
2) High heels, sneakers or flip flops? sneakers in the winter, slides in the summer
3) The Beach, the City or the Mountain? Mountain
4) Who is your favorite singer/group? Even though I love country, my favorite right now is Dawes
5) If you could vacation anywhere (expense is not a consideration) where would you go and why? Africa, on a safari, to see the giraffes!
6) Do you mind that my blog is sometimes snarky? Not at all!
7) What is one thing we would be surprised to know about you? I am extremely shy. In a group of people I don't know I am super quiet.
8 )Favorite, guilty pleasure, TV show? Once Upon a Time. Love it!
9) Favorite book or author? Stone Fox by James Gardiner. Or anything by Anna Quinlan
10) Do you admit to having a favorite child? Nope. (Although I tell them I have a favorite boy and a favorite girl)
11) If you could replace your life with one from the Disney Channel which show would you pick? We don't watch Disney Channel shows. So I have no idea!
I’m going to be lazy and say if you won the award from me, just answer the same questions that Maya asked, but change #11 to If you could replace your life with one from any tv show which show would you pick?
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