Thank God for Perspective!

We woke up Christmas morning this year to the stomach flu at our house. Before the Bible could be read (we start every Christmas morning cuddled in bed reading the story of Jesus' birth) or the presents from Santa could be opened, this first "gift" was upon us. Much to the 5-year-olds frustration she had to wait for Mommy and Giraffeboy to feel well enough to start the morning's activities, and as soon as the last present was unwrapped Mommy went back to bed. There was no going to the big family party at my Aunt's house. I barely registered how cute Giraffegirl and Giraffeboy were opening their presents because I was trying to just make it through without being sick, and really it didn't feel like Chirstmas to me. But I believe that as in so many other times in my life, God blessed me with the gift of perspective, and left me grateful for the Christmas we had. A few days before this Christmas we got an email from our pastor asking us to pray for a family she knew who had just lost their wife/ Mother. This dad was left to raise two young kids, ages 4 and 8, on his own. In addition, 5 days before Christmas I attended the funeral of a close friend's husband, who lost his battle with cancer. My cousin celebrated her first Christmas since her son, age 15, died. So sick or not, as I looked around my room as we curled together watching a movie that afternoon, I couldn't help but realize that I was surrounded by everything I needed on Christmas, and that I was blessed. We are still working on getting better over here, but we are on our way, and we've had plenty of bonding time to enjoy each other as we've been homebound.

This isn't the first time that I've been blessed with perspective. My sister has a close friend whose little girl, Maryah, was diagnosed with ewing-sarcoma bone cancer at age 9. Maryah was amazing- strong, brave, inspirational, and her battle with cancer, including multiple remissions, went on for over 6 years before she died at age 16. Just watching someone so young fight such a hard battle gives you perspective over the things going on in your own life, but in our case, it gave us an even more important perspective and was a blessing. During the years of her fight, my son was born and diagnosed with marfan syndrome, followed by my daughter being born and diagnosed. It seemed that with every new marfan "issue" that came up in my family, my sister would call with the news that something worse was going on with Maryah. I remember vividly the day we got the news that my daughter had marfan syndrome. I was shocked, heavily grieving her perfect health, and I called and cried with my sister on the phone. It wasn't a half hour later that the phone rang. My sister, in her tear-filled voice, told me that Maryah's cancer was back. Suddenly I wasn't grieving my daughters perfect health, but was instead thanking God that she could LIVE with what she had. That wasn't the first time that happened with Maryah and our situation, and it surely wasn't the last, but it lives in my head as a reminder. And don't get me wrong, I would gladly give back all the perspective for Maryah to never have had cancer, for her to be alive and healthy. But I recognize this gift she left us all with.

 Maryah

There are other ways that the gift of perspective has been a blessing in my life. I mentioned earlier that my friend's husband died this year when he lost his battle with cancer. I've watched as he went through the ups and downs of fighting cancer for nearly 10 years, including the periods of remission. I've seen the struggles of dealing with insurance, medical appointments, and so much else. I have another good friend who is fighting cancer too, and I see the struggles she and her family face. And because of our own experience with marfan syndrome I can empathize with the financial strain they go through, and with the insurance struggles and other things. And because of so many situations I've been through with my extended family and friends, I have seen how quickly someone can die, how we aren't guaranteed to live to old age, and how each day is a blessing. When I see these friends fighting these battles I truly realize that it could be me or my family instead. I think of the quote "there but for the grace of God go I", and I am grateful for that grace. It's one more way the gift of perspective has blessed me.

Taking Things Away

I was ok until his chin quivered. Up until then I had rehearsed it in my head. What I needed to say. Why I needed to say it. How he would react. But that quivering chin as he tried to hold in his emotions did me in.
Parenting is hard, whether your kids have special needs or not. There are times in every parents life when you have to be the bad guy, when you tell your kids "no" to something that they think every other kid gets to do. We've been through this many times with both our kids, and though it is sometimes hard, it's a parenting right of passage that we all face. It's just a part of life. When your kids have a medical condition the number of times you have to say no is increased, and there are things you have to say no to that most parents don't need to think about. We plan around these potential "No's", avoid starting things that we may later need to take away, but that isn't always possible. My little marfs didn't come with a handbook, and there is no official list of forbidden activities they must avoid.
The past few weeks have been really hard around here, so much so that it has taken me awhile to process it and come to a place I could write about it. I've talked in my blog before about my son being diagnosed with aspergers syndrome, and as such he has a hard time making friends, and often spends his recess time alone. We found out he was playing gaga at recess. It is the first real activity outside that he has interacted with the other kids. For most kids, it wouldn't matter that they played gaga, a modified form of dodge ball where the ball is supposed to stay on the ground and is batted around with the hand instead of thrown. For my son, whose lenses are already partially dislocated, and whose aorta is enlarged it represented a threat, a serious potential injury, a risk too high to take. So Giraffedaddy and I talked and planned and sat down to have the conversation with Giraffeboy that he could no longer play. We didn't even really make it through our first attempt at the conversation. We outlined the risks, told him we thought he should stop, and when he asked to leave the table we let him. There were no tears from him that day. That was the weekend.
He came home Monday after school and mentioned playing at recess again that day. We couldn't put it off any longer. We needed to know he would no longer do it, that he really understood it wasn't ok. So before bedtime stories we started the talk again. Same outlined dangers, same information, but this time it came with a definite "you can no longer play". And partway through the conversation I saw his chin start to quiver. This little boy, 8 years old, rarely very emotional, so easy going and brave, and I lost it. As I saw the first silent tears rolling down his face, I no longer saw my 8 year old in front of me. Instead I saw that tiny baby, so hoped for, prayed for, wanted, with the same quivering chin when he would start to cry. The tiny boy that from the moment I knew I was carrying him I had sworn to protect and love. It's no wonder I couldn't stop myself from crying. And when that little boy, the brave 8 year old with his silent tears and quivering chin said "I'm sorry mom. I didn't mean to make you cry." I reassured him that I was crying with him, not because of him. I was mourning with him the loss of something that I understood he loved. They were tears of sadness for the opportunities he would never have that most people take for granted. For the unfairness of it all. And for my own failure to protect him from this disappointment.  
In the midst of this there have been numerous blessings. Giraffeboy played for more than a week before we were aware that it was happening, and although there have been multiple injuries daily in the nurses office, he never got hurt. I fully trust that he now understands he can't play, and he has always been responsible enough to follow the activity rules we set up (the ball was supposed to stay on the ground, so in the mind of an 8 year old gaga wasn't off limits). I have no doubt he will follow this too. The number of people who have reached out to us as we have filtered through the aftermath, who have offered advice on how to proceed with making sure the school would understand the seriousness and come up with a way to keep him better protected in the future. The friends who called to offer an ear, or whose shoulder I cried on as I struggled with finding a way to keep him safe. My special needs Moms bible study ladies, whose experience dealing with IEPs for their own kids offered so much help. And our faith, on which we relied on for guidance through the whole situation. The truth is that in the end we aren't willing to keep him in a plastic bubble, so there isn't a foul proof way to keep him safe. But after IEP meetings and new plans, we are relatively confident that this won't happen again.
In the end, none of this was about me or my feelings. It's about the baby boy, with a quivering chin, who has grown up way too fast and is an amazing little boy, who holds my heart in his hands. This Mommy couldn't be prouder of who he is becoming.

 

 

We need a new Role Model

It's that time of year again, when the season is changing from summer to fall, when the kids are getting back into organized sports, and when they play Kenny Chesney's "The Boys of Fall" on the radio every five minutes. It's my favorite time of year to be outside, but it is also the time of the year when I need to mentally pull myself out of the "what might have beens" into the "be grateful for what you haves".
There is something about seeing the facebook posts of friends at their kids' saturday morning soccer games and sunday morning football games that feels a little like a stab at my heart. It's not a heartbreak that my kids don't have enough options, that they will miss out exactly, although there is some of that too. You want your kids to have every choice in life. But there is also a camaraderie that happens between parents at the sports field that you miss out on if you have kids who can't play sports. I see it in the weekly class update letter from giraffeboy's teacher, where she references being like the rest of us heading to our kids' weekend sports events, and in the faded relationships my kids and I have with families of kids from preschool that have gone on to other elementary schools, that have been easier kept up with other sports families. There is an extra effort that needs to be made by us sportless families that I admit I'm not often good at making.
Then there is the final straw for me, the thing that makes my blood boil and drives the point home each year, the Farmington Homecoming week, complete with autograph sessions during elementary lunch with the football team and cheerleaders. I realize it's tradition, a rite of passage that happens for these high schoolers that has been done for longer then people remember here, but I hate it. I hate that my son comes home excited, and that instead of sharing that excitement I can only think "that will never be you". I hate that we celebrate these athletes in our town, but ignore the academic all-stars. I wish we'd relook at what it means to be a hero, and what is worth "stardom".
I wish instead of athletes we'd have the kids come to give autographs that have succeeded in high school against all odds. Bring me the kid who grew up without parent involvement that is excelling, the kid with a mental disability that is beating all the odds. Bring me the kid with aspergers, who despite a natural lack of understanding of basic social skills is thriving. Bring me anybody, really, for my kid to admire that they can relate to. Because no matter how much they might want to, or I might want them to be able to, they will never be that high school athlete. And it doesn't matter. They are perfect just the way they are. I just wish the rest of the world would learn to appreciate them and their fellow "sports-challenged" classmates a little more often.

GiraffeGirl goes to Kindergarten

I'll preface this with the fact I wrote a similar letter to giraffeboy the night before he started kindergarten. I decided to share the letter to Giraffegirl with everyone, since I know every parent feels the same mix of excitement and dread as their babies start school. I hope everyone has a great first day of school!

 

9-03-2012

Dear Giraffegirl-
Tomorrow after lunch I will lead you onto a bus and watch it drive away as you head for your first day of kindergarten. And once again another huge milestone passes as you start your adventure of your school age years. You could not be more excited, talking about seeing your teacher and making new friends, but I find myself more nervous, and a little sad, and worried about how it will go. There are so many things I have no control over, and I wonder if Daddy and I have prepared you enough to tackle this new adventure. School can be a scary place, full of bullies and cliques and everything else, and there is no way to completely protect you from all of it.

There are so many hopes I have for you as you start school. I hope the excitement you feel about learning today continues on throughout your life, and that the smart, silly, sensitive, and creative young girl you are now grows up to be a smart, silly, sensitive, and creative young woman. I hope you continue to think of everyone as your friend, that you continue to see the best in everyone, as you do today. I hope you continue to view the world as a lifelong lesson in learning and that the journey never ends for you. And I hope that on this learning journey you find something that you are so excited about, so passionate about, that brings you great joy, and that you are one of the lucky ones that can turn this passion into a career. I hope you see success as a part of the journey, and that you measure it by how you feel, what you learn, and how you treat others, not by any monetary standard or by the possessions you do or don't have. That is the true measure of success.

One of the things I love most about you at this age is your individuality. I love that you'll mix patterns with stripes, that more color is better (matching or not), and that you don't notice or care what others think about it. I love that you already admire your big brother, and that the two of you have such a great bond and love. I feel like you will be there to protect each other in school, that you each already have a built in friend. I hope as you get into school you continue to follow your beliefs, that you are less concerned about whats "cool" than what's right. I hope you keep the belief that it is ok to be different, and that you are able to realize that the kids who would tease you about it are the ones with the problem. I hope that you do find a group of friends who understand and accept you for who you are unconditionally. Friends will change throughout your life, but I would love it if you found a lifelong friend this year that you could carry with you through all the changes that lie ahead for you.

I hope that as you venture out into the adventure of the school years that you keep the childlike optimism you have now. I hope that as you learn how cruel the world can be, that you continue to view it as hopeful, that you look for the positives in life, and that you appreciate the beauty in the simple things around you. Happiness lies as much in attitude as in circumstance, and so I hope that when life gives you lemons you'll make lemonade.

I hope that you continue to build your relationship with God, that you aren't afraid to share your beliefs, and that you show your classmates God's love through your words and actions. I love listening to you pray each day, and hearing you sing to God, and I hope that you continue to build that relationship and to trust in him.

One of my biggest fears as I send you off is how you will deal with your marfan syndrome, and with your challenges when it comes to physical education. I worry about you being teased for not being able to play contact sports, for not being able to shoot hoops or play floor hockey with your classmates. But I recognize that the kids who would tease would find something to make fun of regardless, and that being teased is a universal experience everyone goes through while growing up. I hope that when faced with the choice to make fun of someone to fit in or to walk away, you'll choose to walk away. Real friends will respect you for this decision, and anyone else isn't worth your time.

The most important thing you need to know in this new adventure, as in everything in your life, is that your Daddy and I are so proud you. We know that great things lie ahead for you, and we believe that you can do anything you set your mind to do. When we wished for a little girl 6 years ago, we had no idea how much joy and how much personality you would bring to our family. We couldn't have imagined how much we could love you, how silly, sweet, smart, and compassionate you are. I couldn't have imagined that a second child would make our family feel so complete, and I had no idea how it would feel to have pieces of your heart walking around in two separate little bodies. But I know now, and it's amazing being your mom. I will always be able to close my eyes and see you as that tiny newborn attached to all those wires in the NICU, so when I want to hold you tighter to keep you safe, you might have to remind me it's ok to let go. You've turned out to be the strongest little girl I've ever met. No matter what you become, what adventures you take on in this journey called life, we will never love you less that we do right now, with all our heart & soul & mind. We can't wait to watch you conquer the world and to travel this journey by your side. Learn well baby girl.

I Love you all the way to the moon and back,
Mommy

Our Marfcation- AKA NMF Conference 2012

If this past weekend was a Visa ad it would go something like this:
Conference registration fee for 2 adults- $600 (thanks MN chapter for the scholarships!)
Cost of 3 nights at the Pennisula Hotel (conference rates) - $620.
Cost of Parking in Downtown Chicago for 3 days- $82.00.
Being surrounded by hundreds of other people who have connective tissue disorders or raise children with connective tissue disorders - PRICELESS!

Many of my friends and family asked me how conference was, or have asked me to describe the experience. I've struggled to find the words to do so, maybe because the experience is so unique, and it is so rare in this world to encounter people as openly accepting as the marfamily. But I think it is more than that. How do you explain to those closest to you how lonely it sometimes feels to raise children with this condition, and how sitting in a room with a hundred + other marf mothers for an hour who are walking this road with you can momentarily make you forget those lonely times? How you don't even have to say your struggles out loud, but when you do you can look around and see the tear stained faces of so many others who have faced them too? How do you explain the experience of spending three days with your heart bared open and your walls down, on emotional overload but not wanting the time to end either? How do you tell them that a complete stranger can understand what you go through better than they who have been there year after year? How do you describe the healing power of being with people who are empathetic to your situation, not just sympathetic? How do you describe the indescribable?

This isn't my first NMF conference I have been privileged to attend, but it is the first one I got to be at fully with no responsibilities. Our first one was in 2009 in Rochester, MN, and as part of the MN chapter it seemed I spent as much time with "behind the scenes" things as I did enjoying the experience. I spent Saturday at that conference with the kids instead of attending general session and the medical workshops. On Sunday I even led (really badly, mind you) the session for unaffected spouses that year. It was a different experience all together for me, and I spent so much time trying to make sure I didn't forget any responsibilities I forgot the most important thing about conference that year- making connections.

I didn't miss the chance this year. Before conference had even begun I had met at least one marf family in our hotel swimming pool, and we had walked the streets of Chicago playing "who's a marf" (be honest, we all did it). Day one, I got a chance to get to know some of the other chapter leaders from around the country. They are an amazing group of men and women, and I left the leadership session inspired to get moving on some new ideas. At dinner that night I got to better know some other parents of marfan kids, as well as a few of the teens and young adults. Day two, I had the chance to learn about some of the newest research, and I was excited to learn that they are studying how marfan affects pregnancy, giving us hope that some of the dangers may be gone before giraffegirl is old enough to consider starting a family. Day two also gave me the chance to meet the famous Dr. Dietz, as well as some of the other top marfan doctors. I also met many other parents, including two moms from our home state of MN who are relatively close by and have kids my children's age! And day three I got to participate in the emotional sessions, and got to talk honestly about the experience of being a marfan mom. It was all amazing! I can't count the number of people I met and the connections made.

It wouldn't be right to blog about conference without talking about the very best part. It happened before the pediatric orthopedic session on Saturday. I was waiting for it to begin when I heard my name. It took a minute to recognize her, but when I did I couldn't believe she was there. The wife I spent the long day with as our husbands had aorta surgery in February of 2010 was there. I hadn't seen her since we had left the hospital, only talked to her via email a handful of times, but the bond made those five days left us family. It was amazing to see her and to finally meet her husband. Even my husband, Mr. Shy Guy, really liked them (I kept forgetting he didn't know them-it just seems so weird because she played such an important part of my life- what was he thinking sleeping through all that?!) It was wonderful to see them, and to reconnect and catch up on their family. We will forever share that special bond, and have that lifelong friendship formed so quickly. It was the best surprise ever!

It's been two days since we returned home from our trip to conference. Two days of the normal routine, but I feel anything but normal. I've been busy, finding people I met at conference on NMF Connect, making sure that the initial connections I've made remain. I still feel a little raw emotionally, but I think there is a part of me that wants that to stay. I don't want to put my emotions about marfan back in the little box I keep them in. I don't want to put on the false smile of everything is OK that I can put on in an instant. I don't want a pity party, but I do want honesty. I don't want to have to smile and celebrate with my friends their children's athletic accomplishments without feeling able to express my sadness when registration time comes around. I don't want to bury feelings because I feel the need to protect those around me.

When my husband first went to conference 3 years ago, at the age of 33, the experience of being among so many other marfs healed a part of him that was still suffering from the teenage years experience of feeling different. We vowed at that conference we would do whatever it took to get our kids to conference during their teenage years, whatever the cost, wherever the location. Seeing the magic that happens between the marfan kids is worth it to us, especially the teenagers. Until then we'll go when it is doable, when it isn't too far, when we can afford it. I do think that the teenage years are the most important time for kids to go, but I'd say that for parents, the years now, as we are starting to negotiate our children's school plans and preparing for the future challenges, are the most important time to go. I feel incredibly lucky and blessed to have had this experience.

The MOSKS

I forgot my bag of wonders when we went to giraffeboy's eye doctor appointment the other day. The kids are getting older, and I wrongly assumed they didn't need me to bring so many distractions for these appointments. And as I sat there in the waiting room waiting for the drops to dilate his eyes, I recognized a kindred spirit across the waiting room, who gladly shared some books with my kids, making the 2 1/2 hour appointment more bearable. Once again, I was so appreciative of the bond shared with other moms in my position.

We're the MOSKS, or Moms Of "Sick" Kids. You can recognize us in specialist's waiting rooms across the country. We're the Moms whose kids go to the doctor more often than they go to the mall, whose kids have entire pages in their address books for the numbers of all their various specialists. We're the ones who drive long distances, sometimes even flying across the country, in order to get our kids into the right doctors who know our kids' disorders. Were the ones who can tell you our kids' days off from school next year before the last school year even ends, because we're trying to plan our kids' appointments around their days off, so they miss as little school as possible. We network online with other parents whose kids share the same condition, hoping to give our kids the best life and medical treatment possible. And we are the ones who aren't afraid to tell a complete stranger about our kids' conditions, hoping to spread awareness and also change how the world sometimes sees our children as "different."

I've never met another MOSK at the doctor whose kids had marfan syndrome, but I have learned of so many other challenges a child can face from my conversations with them. Our kids have heart problems, eye problems, orthopedic problems, or a combination of these. They have down syndrome, muscular dystrophy, heart disease, and any number of other medical conditions. Although varied in their challenges they face, they are all amazing. They have learned over the years to be patient, and the waiting rooms we've shared have not been their first, and certainly won't be their last.

You can recognize a fellow MOSK in a waiting room with a quick glance around, especially at our eye doctor. While many of the parents bring their kids sans toys or entertainment, my fellow MOSK's have their bag of wonders in tow. The bag is simple: books, coloring supplies, snacks, our kid's favorite toy. But for the kids who visit these places frequently enough to be bored with the doctor's toys, it is essential. And for the parent whose kids visit once a year or are new around the place, it isn't necessary. But for those of us who have a membership card to the MOSK group, we visit frequently and have learned to adapt to make the trip bearable. And somewhere along this journey to diagnosis and treatment, we've lost the need to hide from each other what our kids face, and have instead learned to let down the walls we so often build and honestly discuss our kids' conditions.

Which brings us back to the other day. I looked over and saw the mom and her daughter, bag of wonders in tow, and struck up a conversation. We talked about her daughter's eye condition she was born with, I shared about the eye issues my kids face from their marfan syndrome, and she generously shared some of the bags contents to entertain my kids. Chances are, we will never see each other again, as I have rarely run into the same MOSK a second time. But I am grateful for the knowledge I've gained from other MOSKS over our many conversations, and the reminder that the challenges my kids face are like those of so many others. I didn't ask for a membership card to this club, but I have enjoyed meeting some of the various other members, and gaining a knowledge and appreciation for the challenges they've faced.

Sandals

My husband wore sandals today. We took a road trip around Lake Pepin, enjoyed the nice weather along the river, and during a stop for cheese, beer and ice cream about half way around I realized he was sockless in sandals. I didn't say anything when I noticed, afraid I would ruin the moment, afraid an innocent comment would send him back into socks and shoes indefinitely. So when he finally acknowledged it as we got nearer to our house. I was overjoyed and proud of him.

So what? I know most of you are asking that question right now. So here's the deal. My husband is 36 years old. I have been with him since we were both 19, and not once have I seen him wear sandals when it didn't involve water. Even then, it was only in the last 5 years that he traded in water shoes that fully covered his feet for a pair of sandals. My husband has hammer toes, a trait that my kids are slowly showing signs of, that leave his toes an intricate weaving, resembling a work of art. They are beautiful, interesting, uniquely his, but to him they have always been something to hide, a source of difference in a world of straight toes. He has always been amazed by my feet, not in a foot fetish type of way, but in the way you marvel at something you covet. So to see his feet exposed to the world is a huge thing.

I can't say I don't get it, that need to hide the parts of you that are different, that people might notice and exclaim over. I have always been overweight, and I'm not talking about a few pounds, and the initial trip into my swimsuit every time I've gone into a pool has always been a dreaded experience for me. Once in the water, I'm able to let it go, but the walk from the safety of a cover-up to the edge of the pool or beach seems like miles to me. But I do it. I love to swim. And more importantly, I won't let my weight stop me from enjoying the water with my kids, who love to swim too. So I get it, I really do.

For my husband, marfan syndrome has also left him with a slightly protruding sternum, and so in addition to his foot sensitivity he doesn't like to wear thin shirts, or things that cling to his chest. Getting him to swim with the kids has been a work in progress, and I'm glad to say he's finally reached a point where he does it without a fight, and enjoys it too. Someday, maybe he'll even reach the point of comfort where he can swim without a shirt, but that doesn't really matter to me. Being in the water with us is enough.

I don't think I truly got the big deal about his chest protrusion until recently. Maybe I'm just used to it after all these years, and it's just another feature that makes him who he is. But a recent experience helped me get it much more. I was with his aunt waiting for a minor surgery, and the anesthesiologist was doing a medical history preparing to do her job. "What's this?" she asked, poking his aunt's protruding sternum. It was so insensitive, so thoughtless, and unnecessary. And yet I realized in that moment, it was not the first time she had been asked that way, that it was probably an experience that many marfs, including my husband had faced. And it suddenly made sense why he was so sensitive about it. How else would you react to being asked that throughout your life? Who can blame a person for hiding the things that make them different from others when that has been their experience?

Which takes us back to today. We talk often about the need for both of us to find acceptance of ourselves, so we can teach our children to love themselves for who they are. Since so many of the things that might visibly differentiate our kids from their friends are related to their marfan syndrome, much of the burden to set that example falls on Giraffedaddy. And today, one more wall was torn down. one more victory in the fight for self acceptance and self confidence was won. And this wife couldn't be more proud of the amazing man she's married to.