Friday, February 23, 2018

The Mayo Clinic Hospital

A few weeks ago I found myself back at the Mayo Clinic while a family member had a lifesaving surgery. It wasn't even in my radar as I drove down to join other family members for the vigil during surgery that it would bring up my time at Mayo with GiraffeDaddy 8 years ago. It might be naive of me, but the surgery was unrelated and it's been years since that first experience. Plus I've been there multiple times since then and never had any real emotional triggers from those visits, so I didn't expect one this time. But there I sat in a waiting room essentially identical to the one I sat in that day. I found myself drawn back to that experience. It wasn't too bad at first. Not long after they were taken to surgery we were moved to a different waiting room, one much different than the large waiting room I spent that long day in. I didn't really think about it again until the surgery finished and we went down to the surgical consult rooms to talk to the surgeon. At the Mayo you get taken to a hall of tiny rooms and you wait for your surgeon to come talk to you. As we sat there waiting in a room identical to the room from 8 years ago the feelings rushed over me. So little was similar to that first experience. It was a completely different surgery, I was there with multiple other family members this time, and I was older and wiser and knew what to expect. But as we waited there I heard a nurse on the phone outside our room explain to a family that their infant daughter would have her chest open still as she came out of open-heart surgery, and I was momentarily flooded by the memories of the journey of my niece's daughter's heart surgeries and heart transplant. Much of my family I was there with that day had never been through surgery with a family member, so I held it together until I left that night.

I didn't make it out of the parking lot before the tears fell. I can't even tell you everything I was crying about. But I realized something that day. When we left 8 years ago I really believed that was our one surgery in this hospital. But being there that day for something unrelated made me rethink that view. We have a large extended family who could be treated for any multitude of things, like cancer, organ failure, diabetes and other things. We have two children with mild aortic aneurysms. I have a large extended marfamily, many who have the potential to end up in surgery if I'm honest with myself. Those waiting rooms and surgical consult rooms aren't a one time stop for me. They are a lifeline for so many of those I love, and my journey with that hospital and those rooms will be lifelong. And even if I don't think about it in between these visits, each journey will come with memories of the times before. And those emotions will bubble up and blend with the new ones in a overwhelming whirlpool of memory. It is part of this journey I choose to take, and I will see it as a gift not a burden.

I will cherish the unique picture of humanity a hospital shows us. It is a gift to witness the fragility of life, to appreciate the blessing of a single breath of air and beat of a heart. To be blessed with a shared story of another in the waiting room's loved one as they nervously await news. To offer a hug to a crying person overwhelmed with decisions about their loved ones health, or to receive that hug from a stranger at my own time of need. I will celebrate the medical advances and surgical miracles that give my loved ones hope. And recognize that there was a time in my husband's lifetime that the life-saving surgery he had wasn't available. I will continue to wear my heart on my sleeve, to optimistically believe that all will end up ok. And I will be grateful that this medical haven of knowledge is so close to my family when it is needed. I don't know how to protect my heart and emotions against these experiences, but I can choose how I look at them and I can choose to reflect on the blessings that come with these hard experiences. And for this unaffected marfmom, that ability is a Victory.

Sunday, August 28, 2016

When the things we wish for most are so much more amazing and harder than we ever imagined

I found out that there was a local group of people with marfan syndrome who got together often in the beginning of 2009, shortly after Giraffegirl's genetic test came back positive for marfan syndrome. And so our connection and involvement with the Minnesota Chapter of the Marfan Foundation (at the time the Twin Cities Chapter of the NMF) began. I knew if I was going to successfully raise kids with this condition I was going to need others who understood what it was to walk this path. I didn't know it then, but I was going to need adult women who had been through growing up with this to put my fears at bay, and I was going to need other moms raising kids with this to talk about fears and share experiences. I needed community.

When we first started in the Chapter, I was the only one with young kids attending, and although lifelong friendships and some of my favorite adult marfs were met in that first year, there was still a hole. I wanted those other moms to share this experience with. Fast forward 7 years, and our chapter is a mix of parents of affected kids and adults affected themselves. It is exactly what I longed for, but I had no idea what I was asking for with this.

You see, I'm the first to admit that compared to so many we have been lucky in the symptoms my family experiences from marfans. Yes, the kids have dilated aortas, but they are well managed with medications. So far none of them show signs of scoliosis. They both have flat feet and pronating ankles and use orthotics, but that is such a minor thing in the realm of possible treatments. And the only surgery either of them have had is Giraffegirl's surgery for ambylopia (twice).

But it isn't just the people in my own house that I love affected by this anymore. There are adults in my chapter affected who are sisters to me as we navigate the role marfan plays in our lives. There are children affected growing up alongside my children, whose mom's are some of my closest friends, and with whom we cry at each struggle together and celebrate each small victory together. It is family in every sense of the word. It's my local Marfamily.

And so, though my own children have never had surgery, and though my own husband has only had (and I mean that only for the sake of numbers because I know it was a huge surgery) valve sparing aortic root replacement, I have been through so much more with this Marfamily of mine.
In the past two years we've been through two adult valve sparing aortic root replacement surgeries, multiple eye surgeries in both kids and adults, a spine and kidney surgery for one of our 11 year old kids, and a valve sparing aortic root replacement surgery for one of our 4 year olds. It's alot for any family to handle. And every time one of these loved ones is under I sit and wait, anxious for the all is ok, the news that they are fine. I talk to the mothers and offer words of encouragement, not having sat in their seats but knowing the possibility is there and it could be us someday. And we've been incredibly lucky with surgeries here, with story after story of success and happy endings. It's an emotional roller coaster to be sure, but one that has always turned out good in the end.

I'd never personally known anyone who died of marfan syndrome directly before. I've known people with marfans who have died, but always either from other causes or they were friends of a friend, so far removed that I could choose not to deal with the reality that their deaths were from this condition. And so I have. I've chosen to believe that if we followed the doctor recommendations and had surgeries when people should, those I love with this would be ok. It's kept so many of my mom fears away, this refusal to acknowledge that which somewhere deep inside I've always known to be true.

A week ago that which I refused to acknowledge happened, and I was forced to confront my biggest fear head on. That little 4 year old in my Marfamily who had heart surgery this year passed away due to heart failure caused by marfan. He was a brave, determined, tell-it-like-it-is, no nonsense little kid, one who refused to even say hi to me when I visited him after his surgery in the hospital (and who can blame him, when you have heart surgery at 4 I agree manners are over rated!). He was loved by so many including me, and the hole he's left behind in our hearts seems vast and wide. I was there with his family the night he died, and I can only describe the experience as holy. It isn't mine to share everything, but amid the tears was laughter, and present everywhere was love.

He's left behind an amazing gift for the Minnesota Marfamily too. We just came off a magical weekend at the National Conference, and so many from across the country commented on how close our chapter was while we were there. I don't know that we truly appreciated the blessing that was before this. In the last week I have had more phone calls, texts, Facebook messages, and other communications asking how the Marfamily can help. People have looked to me to know what to do, and although I am so unprepared to give any advice on this I've answered the only way I know how. We move forward together and we help with love and without fear. We follow the lead that little boy left us. Without hesitation and with hearts open and our walls down I have felt that love and care this past week radiate from everyone in our chapter who knew him and knows his amazing family. This loss has brought us all closer, and we've exchanged more I love you's and I'm grateful for you's than I had heard in all my years with this family.

My relationship with this condition has changed, that much is true. I no longer look at it as something that can't take those I love. I understand the panicked fear I see in the mom's of newly diagnosed kids so much better then I did. There are so many people with this condition that I truly love, that I would be devastated to lose, both kids and adults, and it's a choice I make to expand this family of affected individuals I helped to grow. Life is about risks. It's about faith. It's about love. It's about picking yourself up by your bootstraps when you don't think you have anything else to give, and it's about holding each other up when the grief is so consuming that you can't stand.

I wrote on a sign we had a picture taken with at the Marfan Conference Walk for Victory that Victory is having a local Marfamily. And that has never been truer than this past week, when our local Marfamily stood side by side united and broken hearted surrounding a beloved family as they celebrated the life of an amazing little boy. For sure, that wish I had so long ago to raise my kids in a marfan community has brought so much more joy and pain to my life then I ever imagined. But it has been an amazing blessing, and it's a group I am so grateful to be a part of. And so with renewed vigor and determination we move forward in our efforts at awareness, education, fundraising, and above all support. We will remember this little boy as we go forward, and his life will continue to make a difference through the continued efforts of all of us who loved him.

Tuesday, May 19, 2015

Almost went to camp.......When the double diagnosis bites you in the butt

We've been waiting to send our child to Camp Odayin for kids with heart conditions since we first heard about it at the 2009 Marfan Conference. What a great way to allow our child an overnight camp experience and still know he was safe. Who better than a pediatric cardiologist on staff to make sure his meds were on time, in the correct dosage, and that activity guidelines would be followed? So when registration opened up this year we hopped to it and sent our information in. We requested giraffeboy be placed with his good friend from our marfan group, and we scheduled the required pre-camp physical and waited.

We got the call tonight that giraffeboy won't be attending camp this year or ever there. When we filled out the application we were honest about his aspergers, and apparently camp staff saw ASD and it immediately disqualified him. Although Giraffedaddy fought valiantly on the phone call, explained how high functioning giraffeboy is and that there will probably be plenty of other kids who are at camp with the same issues whose parents didn't disclose their child's ASD diagnosis, or whose child has not yet been diagnosed, the camp staff was firm in their decision. I can't begin to describe how frustrated, how disappointed, and how heart broken I am. It is scary to send your child away to camp, and the casual way they suggested we look into an autism camp for him and dismissed our need for his cardiac concerns to be addressed at camp assures me that they aren't parents of kids who would be eligible to go there.

It doesn't state on their site that they don't allow kids with ASD, although it does say that a cardiac concern must be their primary diagnosis. Our son is mainstreamed, has no aide, does not get "extra help" in the classroom, and except for his social group time he attends, his day is like any other 4th grader's, and you wouldn't know he was on the spectrum just by spending a few minutes with him. Hang around awhile and you'll notice how he fixates on certain subjects, feels more comfortable around adults and younger kids than with his peers, and enjoys and prefers being alone. But it's not hugely distracting, doesn't stop him from functioning at church school, Boy Scouts, and other "normal" kid activities, and it shouldn't stop him from being able to attend camp.

But here we are. Once again at the stage of "taking things away". I don't think it will ever get easier. And I wish, oh how I wish, that I could put him on the bus with the other kids this July for that camp experience. I wish he could know what it was like to be independent at camp at 10 years old, that he could make those camp memories every child deserves to have the opportunity to make, and that he could have that week disconnected from electronics and at one with nature. Mostly though, I wish those people at camp could understand how awesome this kid that they will miss is. It's their loss in the end. We'll go romp through Lebanon Hills, have a campfire in the backyard, and maybe have a weekend tenting it at Lake Elmo. It's not the same as going to camp alone, but it's the best we can do. And most importantly, he'll spend that week with his mom, dad, and sister, three people that truly love him and appreciate him, ASD and marfan syndrome double diagnosis and all. And for that we can all be grateful.

Saturday, March 22, 2014

It's So Hard to Say Goodbye

Wednesday night my husband became the oldest living marf in our family. His Aunt Bev passed away after a stint in hospice and a long battle with progressive heart failure, among so many other medical issues. She was one of the most amazing women I have ever known, and we are still reeling from what seems like a sudden loss.

We got the news that she had taken a turn for the worse and was being placed into hospice care (meaning she was dying) a few days into a spring break vacation to a friend's wedding in Florida, and after many tears and a long conversation, Giraffedaddy and I made the call to finish our trip as planned. We knew it was what Bev would tell us to do. She rejoiced over things like our family getting a rare fun trip, and we had no doubt she'd tell us to have fun and not worry. Easier said then done, but we continued on with the planned trip. We arrived back home wednesday afternoon and went straight to the nursing home to see her. Over our hour and a half visit we hugged her, shared about our trip, told her we loved her many times and how special she was to us all. We said all the things we needed to say, the things we wanted her to know, and we relished in her smile and hearing her tell us she loved us too.  It was a good visit all things considered. She was barely able to talk, couldn't make solid eye contact, and was clearly tired and sometimes disoriented, but she was smiling, grateful to those caring for her, and happy to see us. In the hallway outside her room we did our best to explain to giraffeboy and giraffegirl that this was the last time they would likely see her, and then we went home. I got the call from Giraffedaddy that she was gone as I walked our kids into school on Thursday morning. As I stood outside the school crying I had no doubt she waited for us before she went on to heaven to see her best friend and brother Don. I can't begin to describe how grateful I am for that time.

Bev was my husband's aunt, but she was so much more than that. She was my Aunt too, from the moment I came into the family. I've lost count of the number of chats we have had, the number of giggles we've shared. I can recall her gigantic smile and her tear filled eyes the day we told her we had gotten engaged, her joy on my wedding day, and her excitement when we found out we were expecting our first child. I can also recall sitting in the room with her praying and crying as we watched her best friend and my father -in-law take his final breaths while I was four months into my pregnancy. It was she that assured us later that Don would be mortified if we named our son after him, and to ignore the family pressure to do so. She also assured us that our baby would know his Grandpa through her stories, and easily agreed she would be our babies' Grandma. It was a role that she relished, a role that she excelled in, and my children are incredibly blessed to have had her for as long as they did.

I can still close my eyes and picture her holding Giraffeboy as a newborn in the hospital, her arthritic hands a work of art balanced around his tiny head, her face lit up in the biggest smile ever. I can recall the many visits when she would play with him and make him giggle, tickling his chin, grabbing his nose, and as he got older showing him the fish in the pond outside her apartment door or reading him a story. And when Giraffegirl came along she just opened her heart up wider. She cried with me as we stood over her basin in the NICU, cried again with me at the prospect of these babies ever having heart surgery the day after Giraffedaddy's aorta surgery. She loved those kids like they were her own, and she relished every moment we spent visiting her.

We took her to doctors appointments over the years, and I sat by and kept her company through many days in the hospital or waiting room over the years. I have seen her in immense pain, in discomfort, be poked and prodded by inconsiderate medical staff in a way I would almost call cruel. But I have also always seen her give a smile through the worst of it, say thank you EVERY TIME to the medical staff that took care of her, and praise God despite what she was dealing with. I have never seen her feel sorry for herself or heard her wish for different circumstances. She could not have been described as graceful but she was definitely full of grace. She had a unwavering faith, and it was sitting next to her at a Christmas Eve Service cradling my 6 month old son that I started truly seeking a relationship with him. Although her faith was incredibly strong, I never felt her push us, never felt her judge me, never saw her say a harsh word about anyone. I saw her cry the day we told her Giraffedaddy had accepted Jesus, but I knew they were tears of joy. She cried the day I told her too.

I went to her often wondering about the best treatment for the kids, questions about family history, frustrations with family members, questions about faith, and with each new question she answered honestly and as well as she could. She encouraged me to keep seeking, to get involved in our local Marfan group, to turn a blind eye to those that wouldn't treat me well, and to savor every day at home with my babies even when I was overwhelmed. She encouraged me to be the best person I could be, to do what is right, and to trust God.

Even as she was leaving this world I watched her that final day as she gave her nurse a huge smile and told her thank you. She strained for every word, but it was that important for her to say it. We could all learn a lot about how to treat our fellow man from her example. Her gifts to us will continue even after she has gone. Her last act of selflessness will come next week, when after the wake they will take her body to the University of Minnesota Medical School, where they will be able to study it. It was her hope that they will learn things from studying her body that can help other marfs, and others who suffer from similar conditions. I can't begin to describe how proud I am of her for that gift.

It will take awhile before the grief will gently fade and be replaced with only happy memories. You don't lose someone so important to you and have it not affect you. But there is joy for her in our pain. Joy that she no longer suffers, joy that she has been reunited with her brother in heaven, and joy she is hanging with Jesus. I have no doubt her and Don are up there giggling and talking away, and that she is giving him an earful about his grand babies and kids and everything else that has gone on since he died. Picturing this makes it a little easier. Heaven is a bit brighter tonight from the light of her radiant smile.  I am grateful to have had the chance to bask in that smile for as long as I did.


Saturday, January 25, 2014

On my Knees...Hanging On By a Thread...and Counting My Blessings

It still amazes me how an appointment for one thing can turn into a whole other adventure. And no matter how many times this happens with the kids I can never prepare myself for it. It always seems to come out of left field, and leaves me feeling like it takes me out. This happened with Giraffegirl's orthopedic appointment 3 weeks ago, and I still don't feel like I have quite gotten my footing, as the information keeps changing and the ground keeps shifting.

We went in because Giraffegirl had a lump at the top of her foot that was being irritated by her orthotics. We had seen her orthotist and been told we better see her orthopedic doctor because no one knew what it was for sure and we wanted to be safe. So I went in prepared to hear about that. I had no other major concerns, and expected it to be a relatively short and sweet appointment. The lump turned out to be a ganglion cysts, a harmless fluid filled sack that will eventually go away on its own. But while examining Giraffegirl's heel tightness the doctor noticed it was getting much worse. He mentioned serial casting at the time, but I didn't pay much attention since he was sending her to a physical therapist to work on it, and I had never heard of serial casting being used for marfan kids. Truth be told, I didn't want to go there yet. It took almost 2 weeks to get into the PT's office, so we happily continued on with our routine, grumbling a bit about the prospect of PT and how we would schedule the appointments around school with the office being 45 minutes away. But no real worries yet.

All that changed at the PT appointment. It only took our PT about 5 minutes to determine that Giraffegirl's heel cord was so tight therapy wouldn't do much, and she needed go through the serial casting process to gain back some of the heel cord length and help put her foot back in the correct position (Giraffegirl had compensated well for the tight heel cord and flat foot by curling her foot under and walking essentially on her ankle). I shouldn't have been completely surprised by this news, as I see everyday how misplaced her foot is, but I still was. I thought that would be the worst of it, and I put on my big girl pants and sucked it up. I started the blame game that day though. I had missed her last ortho appointment and couldn't help but ask myself "What if I hadn't waited so long to get her in? What if I was better at keeping track of when to schedule appointments? What if I had gotten her in 6 months ago when she was supposed to see her orthopedic doctor? Would we still be in this position? Would she still need to go through this?"

It was a long week waiting for the casting process to start. A week filled with second guessing my decision to do this. A week filled with Internet searches for other treatments. A week of unanswered questions. And a week of trying to explain to a seven year old why casting her foot was necessary and what it would mean for her. A week of trying to figure out how recess would work when there was snow on the ground and she can't get her cast wet (school made that so easy- love our school!) And a week of trying to prepare myself and Giraffegirl both mentally and emotionally for this new challenge.

I thought I was ready. I thought I had dealt with my emotions. And then we sat at the casting appointment today and I learned they would cast both feet, not just one. And I found myself figuratively on my knees once again. I wasn't prepared for that. It makes sense. It does. It really will be easier and more effective if her legs are even, if she isn't limping from a height difference of a casted and non cast leg. But I hadn't even considered the possibility, and no matter how much sense it made, all I could see was my little girl in her pigtails laying on that table. I couldn't wrap my head around how much harder two cast legs would be for her. I couldn't bear the thought of her facing an even harder challenge than what I'd anticipated for her. I found myself hanging on by a thread, forcing a smile to keep my tears at bay for her sake, as well as mine. Following the advice of the Charlie Chaplin song "Smile' (see lyrics below if you don't know it). And I was doing OK, until they stood her up and had her try to walk. Her Frankenstein-like first steps had me on the edge of losing it. The first silent teardrops slid down as she reached the other end of the hall and turned around. And I saw it- her huge smile as she bravely tackled this new challenge. She wasn't crying. She wasn't feeling sorry for herself. She was just taking what came her way with a smile on her face and determination in her eyes. And she was a rock star. She tackled that hallway, got a few more adjustments, and we headed off to drop her at school. 

And I was reminded once again of the greatest lesson I have learned in parenting. It's stated in a quote hanging on the wall of the toddler room of the MN Children's Museum. It states "While we try to teach our children all about life, our children teach us what life is all about". It's a statement that resonated powerfully with me today. At my worst, when I have doubted everything I know about this disorder and everything I believe about treatments, a look from my kids with their absolute faith in me can buoy me up. And when I am mourning the loss of their perfect health, they remind me they are stronger than I give them credit for. They are brave. They are amazing. They are miracles sent from God. And they remind me that I can do this. I can take care of them. I can face each new challenge with faith and hope. I can make these decisions about their health to the best of my ability and know that it will be OK, even if it doesn't work.  And I can accept the curious looks and questioning glances of strangers, the teary eyes of friends and family who care, and not question my decision. Because there is a little girl with a purple right foot and pink left foot who believes in my decision, and who doesn't ever question my judgement on decisions for her health. And for this, I am counting my blessings and knowing I am the luckiest mom in the world.



Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
With your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just...

Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you just smile...

That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile

Tuesday, January 21, 2014


This desire to start a blog started in me over a pair of snowpants. I know that most of you now think I am crazy, but bear with me here and hopefully you will understand. When Giraffeboy was in first grade I realized as the first snowfall approached that there was no way he could get a pair of regular snowpants over his orthotics and tennis shoes. (For the marfan parents who might read this, we can have the orthotic conversation another day and I will tell you why I am on team use orthotics.)  I started searching online for a pair of snowpants with side zippers for kids, and at first couldn't even find them, and then when I did they were over $100 and were fancy ski snowpants only made by one company. I was so frustrated.  I couldn't understand why there were not more reasonably priced options, and I truly felt like I was the first parent having to navigate this road. I know I wasn't, but I did not know anyone else who ever had and I couldn't find any suggestions of what other parents had done on the web.

Now a few things for you to understand. 1) We are on a tight budget in our house because we chose to have me stay home to take care of the kids and live on one income. 2) Giraffeboy is NOT an outside kid, so the snowpants were not going to get hours of use. 3) We had snowpants that fit him just fine except for the issue of getting them over the orthotics. 4) He could not put on his own orthotics and shoes and could not tie his own shoes (a hard thing with those long marfan fingers). 5) He had to be able to get his boots and snowpants on independently and get his shoes back on independently too.

I could have talked to the school about getting help for him for this, but I really felt like this was something we needed to figure out on our own. Since Giraffeboy didn't have an aide that worked with him at school I didn't think it was reasonable to expect them to provide someone each day just to help him get his shoes back on. I know that some would disagree with that, but I believed that it was our problem to solve. I also didn't think it was reasonable for me to go to school to help him each day either (I did that for a week or so, and it was not fun, especially for Giraffegirl). So I asked around, posted about it on Facebook (where a dear friend even offered to pay for the snowpants for us), and after searching came up with a plan. My aunt (We will call her Super Sewing Woman) had volunteered to take the seams out of his existing snowpants and install a zipper into them up to the waist. So I picked up her supplies, and after dinner that Thanksgiving my aunt and other family members went to work and made him zippered snowpants. Once we had those, we went and got Giraffeboy a pair of Neos Overshoes to wear as boots, and he was set to go.
Looking back now, it doesn't seem like that big a deal, but at the time, it almost seemed like this huge obstacle. It is like that with so many of the things our kids and families face. I wanted a way to be able to share the feelings and the experience at the peak of the problem, so that another mom could read it and know they weren't alone, and so that those who love us could get a glimpse what it is really like.

We went through the snowpants ordeal again this year, but it was so much better. Giraffegirl could use the original homemade side zippered snow pants and Neos we had for Giraffeboy. And adult side zipper snowpants are so much cheaper than the specialized kids ones, so we could afford to just buy Giraffeboy a pair without worry. And best of all, Giraffeboy recently mastered tying his shoes, so we didn't even really need to get him special boots. Mostly though, I had the experience of the first time and the answers we used so I skipped that whole overwhelmed Momma feeling. And I knew that if I needed her too, the Super Sewing Woman and family had my back and would whip us up just what we needed. And I am grateful everyday for the extended family and friends who are always willing to help bail me out of any situation. And for the other Mamas out there who blog about their experiences and help me feel less alone.

Wednesday, June 12, 2013

I Walk the Line: What it's like Being the "unaffected" spouse and parent

I've written this blog in my head a thousand times since the conversation about the term marf back in April. (If you missed the dialogue, you should read Maya's Blog from April 9th, where she did a fantastic job of reminding those of us who are "unaffected parents" what our role is in raising kids with marfan syndrome.) The blog, as well as the online conversations surrounding this got me thinking again about what my role as the "unaffected parent and spouse" is in a family of people with marfan syndrome.
So what does "unaffected spouse and parent" mean for me? It means that I am the only one in my household that does not have a chromosome 15 mutation. It means that while the rest of the family goes for yearly echos at the heart doctor I watch and wait. It means that I can be sympathetic to what my kids deal with but not empathetic, since I could never truly understand what having this condition feels like. It means that every new challenge anyone in our family faces from this disorder, I have to filter my thoughts and opinions, and be ever considerate of the rest of the family's feelings first. It means that I even question terms I use to describe marfan syndrome, wondering if the members of my family and marfamily will be offended if I use terms like condition or disorder. And it means that I often turn to my marfamily, the group of amazing women I know who are my age living with marfan syndrome for advice on when I need to let my kids out of the safety bubble that would be so easy to keep them in.
It's hard parenting kids, and harder still parenting kids who are not perfectly healthy. And there is an extra challenge when the other parent shares the kid's condition. Every time a new challenge arises for my kids because of this condition I wonder "How will Giraffedaddy feel about this"? When we are talking about how to handle sports activities at school or with boy scouts, I am ever conscious of my words, my tone. There is always a question in my mind of whether Giraffedaddy's experiences growing up should have more weight than my gut feeling, whether to put more weight on his emotional scars or on my mother's intuition. When my child is heart-broken over not being able to do what other kids his (or her) age can, I can't turn to my husband to vent my frustration and heart break for them after bedtime without worrying how he will feel.
The same week that the Marf conversation happened on Facebook, I saw a post from a friend about The Ring Theory, which gives a map of how not to vent to the wrong person when someone you love is going through a tough time or dealing with a medical condition.
While I don't agree that someone going through a hard time should have an open reign to continually vent to everyone around them without regard for anyone's feelings, I absolutely agree with the idea that it is not ok to dump our emotions and frustrations to people more affected by the situation.  Which leads to the challenge of being the "unaffected" spouse and parent. When it comes to my kids, they are the inner circle, and my husband and I would be first ring. But with his shared condition, he has that little edge in closer to the center, that little extra fact that puts me slightly further out on that first ring. It's like I am first ring, once removed. And that simple fact means I spend my life walking the line between honesty in how I feel and consideration for all of their feelings. My husband doesn't expect this from me, would never ask it from me, but it doesn't change the fact that it's the reality of the "unaffected spouse and parent". Marfan Syndrome affects so much of my life, but as the "unaffected spouse and parent" I am left to stand quietly by and let those I love dictate it's significance in our life. It's a hard place for the family scheduler and organizer to be in.  It's a choice I made long ago when we started our life journey together, a choice I would still make today, but it doesn't change the fact that sometimes it is a really hard place to be.