I had a discussion with a wise, dear friend recently about loneliness. She says that sensitive individuals can feel alone even when surrounded by friends. We are each alone in our experiences. We can be living through the same joyful or traumatic events, but how we process and feel these events is ultimately our own.
My 15 year old son, Collin, has a chronic illness and has spent significant time in the hospital. Walking through that as a parent, I am finding that I have never felt more alone, and simultaneously I have never been more aware of connections we have with the people that cross our paths. If we pay close attention in our world, we will find that we are never truly alone. There are connections that happen in everyday interactions, some of which become cemented in memory forever. We are busy people in this world. We like to be busy. It is expected that we fill our weeks with hard work so that we can fill our children's weeks with enriching experiences. What we forget, is to pay attention to the connections and to the time in between the committments. We are so focused on ourselves in our frenzy, that we forget to pay attention to the silent connections we have with other human beings. I have spent a lot of time lately, pondering what seem like random connections in every day life. I don't know that I believe in fate, necessarily, but I am finding that I believe very strongly that people cross our paths for a reason.
There is a silent understanding in the halls of a children's hospital. There are 3 fraternities of families, and if you pay attention you can easily see this. The first group is made up of families who are at the hospital for an appointment. Maybe there for the first time. These families are showered and dressed and carry purses or jackets. They have plans for later in the day. They go directly to their appointment and only quickly glance at the children with IV poles or no hair. Maybe allowing themselves a brief moment to imagine "what if". The second group of families knows worry. Their child has an illness that requires inpatient care or surgery. They have watched their child have painful or scary procedures. They know what it's like to sleep in a chair at their child's bedside. They also know that their current nightmare will be completely over soon, and normal life will resume. The third group is a fraternity that no one wants to belong to. These are families of children with chronic, long term, potentially life threatening illness. These families have spent countless hours/days/weeks in the hospital - either all at one time, or they are frequent flyers spending weeks or months in total. These families know a piece of you without even having any conversation. They look at your visitors sticker on your shirt and they know what you are living. Enough time there, and you get to know what the different floors mean. At our children's hospital - if you are on the 5th floor you have a baby in the NICU, if you are on the 7th floor you have a critically ill child in the PICU, the 9th floor is oncology, and the 12th floor is neuro. If your sticker says one of those floors, you are looking at a long road ahead or behind. These families know the Child Life Staff (people hired to make life easier for kids in the hospital), and the staff in the playroom, cafeteria and front desk. They know all the nooks and crannys and special/safe places in the hospital. These families know true fear and uncertainty. These families have seen a child code (either in a room near their child, or terrifyingly their own child). These parents have collectively held their breath until the code ends, and then thankfully kissed their child in the bed next to them. There is an empathy and understanding when these families pass in the hallway or elevator.
I have been trying to pay attention to these connections lately. When my son was in the hospital recently, I kept crossing paths with another mom. The first time we ran into eachother was in the elevator. She looked at the sticker on my shirt and said "how's 12?". She clearly knew what the 12th floor was, and a little of what that meant. I responded with a brief comment, and she followed up by saying "we were just on 12 for 3 weeks, now we're on 9". No further conversation, but I knew what that meant - 12 is neuro, and then they were transferred to 9 oncology. Her child has a brain tumor. We crossed paths several more times and I saw her beautiful toddler daughter. Those interactions are probably in my memory forever, and I try to send hope every time I think of that sweet girl. It was a meaningful human connection.
Another recent experience has made me think about how important it is to pay attention to our every day connections. We are trying very hard to manage symptoms for my son so that he can be as functional and pain free as possible. We have started to look outside of traditional medicine a bit. I had considered accupuncture, but my son has been reluctant and the cost can be prohibitive, so I had not taken much action. My friend's daughter plays a club sport, and my friend was talking with one of the other moms from the team and discovered that she does accupuncture. My friend shared Collin's story. This other mom also has a child with a chronic illness, and likely understood our need on a different level than most. Without ever meeting us, she decided to offer accupuncture for Collin and write off the cost of his care entirely. These paths seem like they were clearly meant to cross.
Imagine if we start paying attention to everyone we meet. Imagine if we get to know their story a little, how it might impact our story. Imagine how much less alone we might feel. What if we open ourselves up to possibility, if we focus less on our busy lives and what we are doing next, and start paying attention to the moment we are in? It seems to me that we will have so much more empathy and compassion. We will learn so much about ourselves and others. We will have more support and compassion given to us when we need it. Imagine how our future could change if we open ourselves up to these connections. Even better, imagine how we could change the future of others.
Saturday, February 14, 2015
Tuesday, April 29, 2014
Lessons from my daughter
*note - my daughter agrees with what is in this blog and has given me her permission to post this. :)
My 10 year old daughter is an incredibly social kid. She makes friends easily and loves to be around people. My husband and I could tell from when she was tiny that she was motivated by social time. She is a good student and a decent athlete, but really she goes to school, gymnastics, dance, Girls on the Run, etc, all for the social time. She enjoys the activities, but finds them even more enjoyable if she can share them with friends.
This social kiddo has had some wake up calls this spring. The first wake-up call came from her teacher. Her 4th grade teacher invited her students to attend the parent teacher conferences. During my daugher's conference, her teacher pointed out to her that although her grades are good, her potential is even greater. She was told that she may be able to coast now, but as work gets harder she will need to work harder to get decent grades. Her teacher noted that she seems to rush through her work so that she can hang out with friends. She has always gotten good grades, so my husband and I hadn't realized that she wasn't working up to her potential.
A few weeks later my daughter got similar talks from both her gymnastics coach and her Girls on the Run coach. Her gymnastics coach stated that she didn't seem to be making the corrections she needed to make. Her scores at her meets have all been good, so we didn't realize that she was coasting. Her Girls on the Run coach stated that she could run faster and harder than she does, but she doesn't seem to give it 100%.
We came down hard on her at home. We talked to her about putting more effort into everything she does. We talked to her about prioritizing, and about acheivement, and about showing people what she is made of. She visibly stepped up the effort at school and made a point of telling us how hard she was working. We also got comments from her teacher about seeing more focus. We weren't really seeing the change, because as I said earlier, her grades have always been good. We did, however, feel like she was learning a valuable lesson.
She had a gymnastics meet this past weekend. We talked the whole way there about how she needed to give 100% effort, and how she needed to prove herself, and how she needed to show them what she was made of. We got to the meet and she got up to do her first event, bars. I was nervous for her. I really wanted her to do well, and I wanted her coach to see how hard she was working. She finished her first skill on the bars, and then completely froze. Total, complete, brain fart. She repeated the skill she had started with, threw a couple of other skills in, and ended her routine. This is the same routine she has done at every meet all season. She knows it like the back of her hand. She got the lowest score she has ever gotten on any event. The pressure got to her. I knew that was the problem.
I talked to my daughter later about how I thought that I was encouraging her, but it was maybe too much pressure. She agreed, and said that that our encouragement didn't make her feel more confident and strong. Our encouragement made her more nervous and she froze.
I'm the one who really had the wake-up call! Several of them in fact. My first wake-up call was that encouragement in a pressuring way doesn't work with some people. My second wake-up call was that my daugher doesn't need to change much (although a little extra effort across the board never hurts)! It was an important lesson for her that she has the ability to work harder, and that people notice this. Her grades are good and she is an athlete, but maybe her biggest strength is that she is an incredible friend. She genuinely cares about her friends. She is a good listener, and a great story teller. She is good at organizing a group, and cares about making sure no one is left out. I don't think is is necessary to ask her to be less social. We have never been told that she is disruptive because of social activity. Maybe she will just coast in school and sports. And maybe that's okay. Her grades are good, she is clearly learning and enjoying school. She is strong and fit in her sports, and truly doesn't care about winning. She participates in gymnastics and dance and running because she enjoys the activities, not because she has to be the best.
I think we put too much emphasis on achievement in our society. Kids are being put on elite teams and in advanced courses at school. They are expected to work so hard, and show off so well. I don't think we are making our kids more successful adults by pressuring them. Kids need to know when it is the appropriate time and circumstance for hard work. They need to find what they are passionate about, and discover how working hard on something you really love doesn't even feel like work. They need to be allowed to try activities and continue activities even if they aren't very good at them, just because it's fun. They need to learn that it is okay to value relationships and friendships over other things if that is what motivates them. It is okay to coast sometimes. What is important is that our children do become productive and successful adults. Creating stress and anxiety and fear of failure does not lead to success. The most successful adults I know have experienced failure occasionally. They know that they can try new things and sometimes these efforts work and sometimes they don't. They know that relationships are the foundation of any success.
I was the one who woke up. My daugher is awesome just the way she is! She knows how to work hard when she needs to. She knows how to be a good friend. And she knows that she doesn't have to be the best. I'd say that's pretty successful for a 10 year old girl.
My 10 year old daughter is an incredibly social kid. She makes friends easily and loves to be around people. My husband and I could tell from when she was tiny that she was motivated by social time. She is a good student and a decent athlete, but really she goes to school, gymnastics, dance, Girls on the Run, etc, all for the social time. She enjoys the activities, but finds them even more enjoyable if she can share them with friends.
This social kiddo has had some wake up calls this spring. The first wake-up call came from her teacher. Her 4th grade teacher invited her students to attend the parent teacher conferences. During my daugher's conference, her teacher pointed out to her that although her grades are good, her potential is even greater. She was told that she may be able to coast now, but as work gets harder she will need to work harder to get decent grades. Her teacher noted that she seems to rush through her work so that she can hang out with friends. She has always gotten good grades, so my husband and I hadn't realized that she wasn't working up to her potential.
A few weeks later my daughter got similar talks from both her gymnastics coach and her Girls on the Run coach. Her gymnastics coach stated that she didn't seem to be making the corrections she needed to make. Her scores at her meets have all been good, so we didn't realize that she was coasting. Her Girls on the Run coach stated that she could run faster and harder than she does, but she doesn't seem to give it 100%.
We came down hard on her at home. We talked to her about putting more effort into everything she does. We talked to her about prioritizing, and about acheivement, and about showing people what she is made of. She visibly stepped up the effort at school and made a point of telling us how hard she was working. We also got comments from her teacher about seeing more focus. We weren't really seeing the change, because as I said earlier, her grades have always been good. We did, however, feel like she was learning a valuable lesson.
She had a gymnastics meet this past weekend. We talked the whole way there about how she needed to give 100% effort, and how she needed to prove herself, and how she needed to show them what she was made of. We got to the meet and she got up to do her first event, bars. I was nervous for her. I really wanted her to do well, and I wanted her coach to see how hard she was working. She finished her first skill on the bars, and then completely froze. Total, complete, brain fart. She repeated the skill she had started with, threw a couple of other skills in, and ended her routine. This is the same routine she has done at every meet all season. She knows it like the back of her hand. She got the lowest score she has ever gotten on any event. The pressure got to her. I knew that was the problem.
I talked to my daughter later about how I thought that I was encouraging her, but it was maybe too much pressure. She agreed, and said that that our encouragement didn't make her feel more confident and strong. Our encouragement made her more nervous and she froze.
I'm the one who really had the wake-up call! Several of them in fact. My first wake-up call was that encouragement in a pressuring way doesn't work with some people. My second wake-up call was that my daugher doesn't need to change much (although a little extra effort across the board never hurts)! It was an important lesson for her that she has the ability to work harder, and that people notice this. Her grades are good and she is an athlete, but maybe her biggest strength is that she is an incredible friend. She genuinely cares about her friends. She is a good listener, and a great story teller. She is good at organizing a group, and cares about making sure no one is left out. I don't think is is necessary to ask her to be less social. We have never been told that she is disruptive because of social activity. Maybe she will just coast in school and sports. And maybe that's okay. Her grades are good, she is clearly learning and enjoying school. She is strong and fit in her sports, and truly doesn't care about winning. She participates in gymnastics and dance and running because she enjoys the activities, not because she has to be the best.
I think we put too much emphasis on achievement in our society. Kids are being put on elite teams and in advanced courses at school. They are expected to work so hard, and show off so well. I don't think we are making our kids more successful adults by pressuring them. Kids need to know when it is the appropriate time and circumstance for hard work. They need to find what they are passionate about, and discover how working hard on something you really love doesn't even feel like work. They need to be allowed to try activities and continue activities even if they aren't very good at them, just because it's fun. They need to learn that it is okay to value relationships and friendships over other things if that is what motivates them. It is okay to coast sometimes. What is important is that our children do become productive and successful adults. Creating stress and anxiety and fear of failure does not lead to success. The most successful adults I know have experienced failure occasionally. They know that they can try new things and sometimes these efforts work and sometimes they don't. They know that relationships are the foundation of any success.
I was the one who woke up. My daugher is awesome just the way she is! She knows how to work hard when she needs to. She knows how to be a good friend. And she knows that she doesn't have to be the best. I'd say that's pretty successful for a 10 year old girl.
Saturday, April 12, 2014
Our Positives :)
A couple of weeks ago I instituted a new policy in my home. I was sick and tired of the constant bickering and negativity and tattling. I decided that we needed to refocus our energy into something positive. That evening I told my family that we were going to start sharing one positive thing from our day during dinner. Every day. This was met with sighs and ughs and eye rolls. I told them I didn't care if it felt weird or forced, and that they were required to participate. No one would be allowed to leave the table until everyone came up with one thing. My family is very predictable - Kris and I each came up with something small, Liam focused on an achievement, Alex had about 25 positives that she wanted to share in minute detail (she had to be cut off eventually), and Collin said "I don't know". We ended up having to feed Collin a positive from what we knew of his day, but he acknowledged it and agreed that it was indeed a positive.
The next day when we sat down for dinner, Alex immediately said "we have to do our positives". She was excited about it because it guaranteed her a good chunk of time center stage. Collin groaned, but no one else protested. It was a similar scenario from the first night - Kris and I each offered a small positive, Liam focused on achievement, Alex took the stage until we cut her off, and Collin said "it was just an ordinary day". We again had to help him share a positive.
As the days passed all three kids (even Collin, who acted like it was sooo not cool) would remind us at dinner that we needed to do "our positives". On the couple of occasions that we had activities that interfered with our normal family dinners, we would be reminded the next day that we forgot to do our positives. The kids would insist that we make up the night we missed and do two. They started getting more creative with what they would come up with. Collin continued to initially say "I don't know. It was just an ordinary day", but with minimal prompting would come up with something more specific. The rest of us also conceded that "just an ordinary day" could be a positive.
A couple of days ago I suggested that we could also share one challenge from the day, in addition to our positives. All four other members of my family instantly and absolutely vetoed that idea. They all said that the whole purpose was to focus on the good. Why would we bring the bad into that?
Although it is just a small piece of our day, I think there has been a strong impact from simply sharing one positive each. We have opened up a whole new level of conversation at dinner time, and everyone participates. We all have a better sense of what we are each experiencing during the day. We have all become more aware of each other's temperments and what drives us. Alex's run-on sentences describing a gazillion positives has led to fits of laughter among the rest of us (and her). Our positives have truly made our entire dinner time happier. Just coming up with one positive each has led to laughter, and appreciation of eachother, and has completely eliminated fighting at the dinner table. Now I need to figure out how to carry that out to the other 15 awake hours of the day......
The next day when we sat down for dinner, Alex immediately said "we have to do our positives". She was excited about it because it guaranteed her a good chunk of time center stage. Collin groaned, but no one else protested. It was a similar scenario from the first night - Kris and I each offered a small positive, Liam focused on achievement, Alex took the stage until we cut her off, and Collin said "it was just an ordinary day". We again had to help him share a positive.
As the days passed all three kids (even Collin, who acted like it was sooo not cool) would remind us at dinner that we needed to do "our positives". On the couple of occasions that we had activities that interfered with our normal family dinners, we would be reminded the next day that we forgot to do our positives. The kids would insist that we make up the night we missed and do two. They started getting more creative with what they would come up with. Collin continued to initially say "I don't know. It was just an ordinary day", but with minimal prompting would come up with something more specific. The rest of us also conceded that "just an ordinary day" could be a positive.
A couple of days ago I suggested that we could also share one challenge from the day, in addition to our positives. All four other members of my family instantly and absolutely vetoed that idea. They all said that the whole purpose was to focus on the good. Why would we bring the bad into that?
Although it is just a small piece of our day, I think there has been a strong impact from simply sharing one positive each. We have opened up a whole new level of conversation at dinner time, and everyone participates. We all have a better sense of what we are each experiencing during the day. We have all become more aware of each other's temperments and what drives us. Alex's run-on sentences describing a gazillion positives has led to fits of laughter among the rest of us (and her). Our positives have truly made our entire dinner time happier. Just coming up with one positive each has led to laughter, and appreciation of eachother, and has completely eliminated fighting at the dinner table. Now I need to figure out how to carry that out to the other 15 awake hours of the day......
Monday, April 7, 2014
Owning My Story - My Messy Beautiful
"I now see how owning our own story and loving ourselves through that process is the bravest thing we will ever do" - Brene Brown
I was raised with the belief that if we plan, and set goals, and work hard enough our lives will turn out exactly how we want. I was never a perfectionist. In fact, I was somewhat lazy, but I was smart and strategic and I figured out exactly how to do the bare minimum and still have things fall in place. I was a planner from a very early age, and lucked into everything happening exactly how I planned. I had a sense of control over my life because of this luck. I say it was luck because I have very slowly figured out that we cannot control every aspect of our lives. We can have what we think is a perfect blueprint for our future but then a few detours get thrown in just to keep us on our toes. I am just coming to terms with this as a 40 year old woman.
I was raised by a Philosophy professor and a middle school French teacher. It was a middle class home in Flagstaff, Arizona. I had as close to a perfect childhood as one can have. Flagstaff is a smaller city with an abundance of outdoor activities, and I was given a good amount of independence growing up. I could ride my bike anywhere. Expectations were high in my family. My brother and I always knew we would go to college. We knew we should do things in the right order (ie - school, marriage, children, etc). The question was never "will you go to college/grad school?" it was "where will you go to college/grad school?". I was a rule follower (still am, really), so I did what I knew what I was supposed to do, with all of the confidence in the world that my life would work out exactly as planned. Largly, it has. I went to college, fell in love, got married, went to grad school, bought a house, and had my first baby - in that order.
Everything was perfect. Then the rug got pulled out from under me for the first time. When I was 20 weeks pregnant with my first child we went to our first ultrasound, excited to see our baby. To my total disbelief, things weren't perfect. My baby had a large cyst in his brain, and possibly other malformations in his brain that couldn't be determined with certainty until after birth. My husband and I were upset and scared for exactly one evening. Sounds crazy, I know. We did some research online with the minimal information we had, and found a few hopefull stories. We took a walk and talked about our fear, and decided that of course everything would be okay. It always was for us. The rug had been pulled out from under us, but we had kept our balance. When Collin was born, the rug was pulled again. He was struggling to breathe and there was concern about his neurological status. He was transfered to St. Louis Children's Hospital NICU. An MRI confirmed that he had a large intracranial cyst and Agenesis of the Corpus Callosum. The second diagnosis means that the middle part of the brain - the part that connects the two hemespheres - never developed. We were told that Collin would likely be profoundly delayed, and might never walk or talk. We were devistated, briefly. Then we caught our balance again.
It quickly became clear that Collin was fine, in spite of the diagnoses. He was healthy and developmentaly on track. He was an easy, happy baby and toddler. So we decided to have another, and then another. Liam, our second son was a screamer for the first couple of months, but then became an easy, happy baby and toddler as well. We naturally thought that they were easy and happy because we were doing something right. Then we had our daughter, Alex, and she totally disproved that theory! She was a screamer for the first two years! We tried all of the tricks that had worked with the boys, and they did not work on her. It was rough, but once again we didn't lose our balance.
When Collin was 6 he started waking up in the mornings and vomiting. He would get sick once, and then he would be fine. He would go on to school and wouldn't have any further issues. Then, he started complaining about headaches. The occupational therapist at his school caught me in the hallway around that same time and said that she was concerned about his hand tremor. Hand tremor??? I had never noticed that!! I made an appointment for him with his pediatrician, who heard the symptoms and said "morning vomiting is hallmark symptom for high intracranial pressure". He scheduled him for an MRI at Children's Hospital. The very next morning, the pediatrician called and said that the MRI showed that the cyst had grown to baseball size, and he had scheduled an appointment for Collin with a pediatric neurosurgeon for that afternoon. That started our journey of 7 brain surgeries, multiple hospitalizations, medication, a trip out of state for more opinions/ideas. The times that Collin was in the PICU, we actually felt lucky. We would look at families who were literally living in the waiting room - they had pillows, suitcases, fans, etc. We could at least go home (we only live 15 minutes away). We all, including Collin, saw children in neighboring rooms code and die, and we felt lucky that it wasn't us. My husband and I felt extremely proud of Collin for his resilience, and honestly felt proud of ourselves, too. Our kids, including Collin, were thriving - doing well in school, had good friends, and were involved in extra-curricular activities. My husband and I both had good jobs. We had again and again kept our balance, or at least kept the appearance of balance.
Collin started having symptoms again recently. Things are different this time. His shunt is partially blocked. In the past this would mean a shunt revision and Collin would be on the mend. The neurosurgeon feels the risk of going in surgically at this time is too great. So, we are trying to manage symptoms with medication and basically waiting for Collin to get worse. Or better? We know the rug will likely be pulled out from under us again, but we don't know when. So, we are waiting for something bad to happen instead of waiting for improvement. A total shift in mindset.
I am aware that the appearance of balance isn't necessarily accurate. We do have a lot of good in our lives and in general we are happy and functional. However, I am realizing that my body, and my marriage, and my sleep, and my finances, are showing the signs of stress that I have refused to acknowledge. I have put on weight that I can't lose. I have digestive issues, sleep issues, and issues with my heart racing. I have been checked out by a doctor and I am completely healthy physically. These are apparently stress issues. My husband and I have had struggles that we have never had to deal with before. We love each other and know that we will be fine, but again these are stress issues. I am learning that planning doesn't mean perfection. The crazy and the messy parts of life happen even with good planning. These crazy times are valuable. These times are when we really get to know ourselves and test our resilience. These are the times that give us perspective so we can roll with the smaller every day frustrations like bad weather, cancelled plans, or missed trains.
I now realize that the only way we can continue to keep our balance is by owning our fears, our joy, our stress. This is my messy, beautiful life, and I love it. This is only my 3rd blog post. I had no intention of starting a blog until I read the book #CarryOnWarrior. I read the entire book in 24 hours and it not only touched me, it screamed to me. We all have a story. I have a story - and sharing my story will be therapeutic to me, and maybe even to others. Writing was all of a sudden something I needed to do, and I needed to share my writing. An amazing thing has happened with just 3 posts - people have come up to me at school pick up, at sporting events, at birthday parties, and in stores, and they have all said "I have read your blog. Thank you for sharing your story. Here is what is going on in my life......" People want to connect. I am happy to share my #messybeautiful life, and I hope that I can inspire others to share theirs as well.
This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!
I was raised with the belief that if we plan, and set goals, and work hard enough our lives will turn out exactly how we want. I was never a perfectionist. In fact, I was somewhat lazy, but I was smart and strategic and I figured out exactly how to do the bare minimum and still have things fall in place. I was a planner from a very early age, and lucked into everything happening exactly how I planned. I had a sense of control over my life because of this luck. I say it was luck because I have very slowly figured out that we cannot control every aspect of our lives. We can have what we think is a perfect blueprint for our future but then a few detours get thrown in just to keep us on our toes. I am just coming to terms with this as a 40 year old woman.
I was raised by a Philosophy professor and a middle school French teacher. It was a middle class home in Flagstaff, Arizona. I had as close to a perfect childhood as one can have. Flagstaff is a smaller city with an abundance of outdoor activities, and I was given a good amount of independence growing up. I could ride my bike anywhere. Expectations were high in my family. My brother and I always knew we would go to college. We knew we should do things in the right order (ie - school, marriage, children, etc). The question was never "will you go to college/grad school?" it was "where will you go to college/grad school?". I was a rule follower (still am, really), so I did what I knew what I was supposed to do, with all of the confidence in the world that my life would work out exactly as planned. Largly, it has. I went to college, fell in love, got married, went to grad school, bought a house, and had my first baby - in that order.
Everything was perfect. Then the rug got pulled out from under me for the first time. When I was 20 weeks pregnant with my first child we went to our first ultrasound, excited to see our baby. To my total disbelief, things weren't perfect. My baby had a large cyst in his brain, and possibly other malformations in his brain that couldn't be determined with certainty until after birth. My husband and I were upset and scared for exactly one evening. Sounds crazy, I know. We did some research online with the minimal information we had, and found a few hopefull stories. We took a walk and talked about our fear, and decided that of course everything would be okay. It always was for us. The rug had been pulled out from under us, but we had kept our balance. When Collin was born, the rug was pulled again. He was struggling to breathe and there was concern about his neurological status. He was transfered to St. Louis Children's Hospital NICU. An MRI confirmed that he had a large intracranial cyst and Agenesis of the Corpus Callosum. The second diagnosis means that the middle part of the brain - the part that connects the two hemespheres - never developed. We were told that Collin would likely be profoundly delayed, and might never walk or talk. We were devistated, briefly. Then we caught our balance again.
It quickly became clear that Collin was fine, in spite of the diagnoses. He was healthy and developmentaly on track. He was an easy, happy baby and toddler. So we decided to have another, and then another. Liam, our second son was a screamer for the first couple of months, but then became an easy, happy baby and toddler as well. We naturally thought that they were easy and happy because we were doing something right. Then we had our daughter, Alex, and she totally disproved that theory! She was a screamer for the first two years! We tried all of the tricks that had worked with the boys, and they did not work on her. It was rough, but once again we didn't lose our balance.
When Collin was 6 he started waking up in the mornings and vomiting. He would get sick once, and then he would be fine. He would go on to school and wouldn't have any further issues. Then, he started complaining about headaches. The occupational therapist at his school caught me in the hallway around that same time and said that she was concerned about his hand tremor. Hand tremor??? I had never noticed that!! I made an appointment for him with his pediatrician, who heard the symptoms and said "morning vomiting is hallmark symptom for high intracranial pressure". He scheduled him for an MRI at Children's Hospital. The very next morning, the pediatrician called and said that the MRI showed that the cyst had grown to baseball size, and he had scheduled an appointment for Collin with a pediatric neurosurgeon for that afternoon. That started our journey of 7 brain surgeries, multiple hospitalizations, medication, a trip out of state for more opinions/ideas. The times that Collin was in the PICU, we actually felt lucky. We would look at families who were literally living in the waiting room - they had pillows, suitcases, fans, etc. We could at least go home (we only live 15 minutes away). We all, including Collin, saw children in neighboring rooms code and die, and we felt lucky that it wasn't us. My husband and I felt extremely proud of Collin for his resilience, and honestly felt proud of ourselves, too. Our kids, including Collin, were thriving - doing well in school, had good friends, and were involved in extra-curricular activities. My husband and I both had good jobs. We had again and again kept our balance, or at least kept the appearance of balance.
Collin started having symptoms again recently. Things are different this time. His shunt is partially blocked. In the past this would mean a shunt revision and Collin would be on the mend. The neurosurgeon feels the risk of going in surgically at this time is too great. So, we are trying to manage symptoms with medication and basically waiting for Collin to get worse. Or better? We know the rug will likely be pulled out from under us again, but we don't know when. So, we are waiting for something bad to happen instead of waiting for improvement. A total shift in mindset.
I am aware that the appearance of balance isn't necessarily accurate. We do have a lot of good in our lives and in general we are happy and functional. However, I am realizing that my body, and my marriage, and my sleep, and my finances, are showing the signs of stress that I have refused to acknowledge. I have put on weight that I can't lose. I have digestive issues, sleep issues, and issues with my heart racing. I have been checked out by a doctor and I am completely healthy physically. These are apparently stress issues. My husband and I have had struggles that we have never had to deal with before. We love each other and know that we will be fine, but again these are stress issues. I am learning that planning doesn't mean perfection. The crazy and the messy parts of life happen even with good planning. These crazy times are valuable. These times are when we really get to know ourselves and test our resilience. These are the times that give us perspective so we can roll with the smaller every day frustrations like bad weather, cancelled plans, or missed trains.
I now realize that the only way we can continue to keep our balance is by owning our fears, our joy, our stress. This is my messy, beautiful life, and I love it. This is only my 3rd blog post. I had no intention of starting a blog until I read the book #CarryOnWarrior. I read the entire book in 24 hours and it not only touched me, it screamed to me. We all have a story. I have a story - and sharing my story will be therapeutic to me, and maybe even to others. Writing was all of a sudden something I needed to do, and I needed to share my writing. An amazing thing has happened with just 3 posts - people have come up to me at school pick up, at sporting events, at birthday parties, and in stores, and they have all said "I have read your blog. Thank you for sharing your story. Here is what is going on in my life......" People want to connect. I am happy to share my #messybeautiful life, and I hope that I can inspire others to share theirs as well.
http://momastery.com/carry-on-warrior
Thursday, April 3, 2014
Expectations
We are all
born with a set of expectations.
Expectations that start generations back. From the very first day families have a
pretty strong idea of what your life will look like. What success will look like. What happiness and sadness will look
like. If you are born into a middle class,
educated family, the expectation is that you will likely end up as a middle
class, educated adult. If you are born
early, or with health issues the expectation is likely that you will have more
struggles. If you are born into an
extremely impoverished home there is a reasonable expectation that you will not
grow up to be middle or upper class without significant changes in your
circumstances.
ALL expectations are judgment laden. There is a pre-defined idea, based on family history
and genetics of what success looks like.
Along with that there is the belief that unless we have “succeeded” we
cannot be truly happy or fulfilled. On
the flip side, we frequently hear the new catch phrase “first world problems”
which gives us all the message that we cannot be truly unhappy with our lives knowing that there are people in the world
who have it so much worse. As a result,
many of us face adulthood not knowing if we are justified in feeling anything. We can’t be happy because we have not truly
succeeded yet – we don’t have enough education, or enough money, or a nice
enough house or car, or we are not thin enough, or fit enough. We also don’t feel justified in feeling sad
because our problems are just “first world problems”. After all, we have food to eat, a roof over
our head, a car to drive, a decent job/education.
Some people,
like my son Collin, defy expectations right off the bat. We were told that he
might not walk or talk, that he might not be able to do anything without assistance. He did all of the above, and did it in the
right order. He was called a miracle –
by us, and by friends and family, and even by doctors. When he started having health problems later,
I didn’t feel like I was allowed to feel sad about it or to grieve the fact
that he wasn’t perfectly healthy. I didn’t
feel allowed because of my own judgment and expectations put on sadness. I thought about how much worse things could
have been, and I didn’t feel justified in expressing sadness for how things
were. After all, he was a miracle.
I work in
the NICU at a Children’s hospital. There
are many families that will stick in my mind forever. I will tell you about one. There was one baby boy, who was born full
term but had some horrible setbacks in his first few weeks. He nearly died multiple times. The family and extended family were people of
great faith and turned to their priest for prayer and support. The priest prayed fervently for the
baby. This baby boy survived and has
done beautifully. He has met all of his
milestones, and amazingly is without any long term repercussions of the crises
in the first few weeks. The priest is
now up for sainthood, and this child’s life is being seen as one of his
miracles. People from the Vatican
actually came out to the children’s hospital to investigate this miracle. This next part of this story is what sticks
with me the most. (This is not intended
to question the priest or the belief that this story was significant). The people from the Vatican interviewed one
of the head neonatologists. They asked
him if he believed that this baby was indeed a miracle. His response
“He is absolutely a miracle! We
have 65 miracles in the NICU right now.
Would you like to come see them?”
The point to
all of this is… we are all miracles! Every single one of us. Simply because we are human. Success in humans is not education, or money,
or things, or appearance. Success is
life. We are valuable simply because we
are here. We can feel happy or sad or
fearful, or any other emotion without comparison or judgment, simply because we
have the capacity to feel. There is no
right or wrong. There is no perfect
success or perfect failure. We all
succeed and we all fail many, many times in our lives. What makes us successful is that we continue
to show up to life and do the best we can in relationships. That we do the best
we can to take care of ourselves and those we love.... without judgment.
Tuesday, April 1, 2014
Transitions
I am not a blogger. I am not a writer. I entitled this blog "borrowing trouble" because that feels a bit like what I am doing. It is a HUGE leap of faith for me (I know, for anyone) to put myself out there and open myself up for critique. For whatever reason this feels like something I HAVE to do right now. My life is in a transitional point, as are the lives of everyone around me. Writing seems like the only way to hopefully process all of the changes.
I just turned 40. I have 3 children who are transitioning from kids to pre-teens and teens with all of the emotions and hormones that go along with that. I have been married for 17 years to a man that I love deeply, and who loves me, but we have had enormous changes in the landscape of our marriage in the past two years. He is also in transition as an individual. He just left a job of 17 years to go to work full time for a company that he has done consulting for over the course of the past 18 years. My oldest son has health problems, and the course of treatment has significantly changed over the past month.
My 40th birthday truly didn't seem like a big deal to me. All of my friends had already hit that mark, and they survived just fine. What is hard is the realization that my days of being a young mom, or a mom with young children are over. I will never again have a first smile, or a first word, or a kindergartner, or a first loose tooth. My boys are 14 and 12, and my daughter is 10. They feel very grown up, and are trying very hard to show me how grown up they are. I am loosening my reigns in a way. I no longer know all of the parents of their friends. I am no longer in charge of scheduling playdates. They are making these arrangements on their own. I love watching them blossom and take responsibility. For the most part, I love the friends and the activities that they are choosing, so in general I feel like they are on a good path. Most moments, I am impressed and very willing to give them independence. Then the coin is flipped and we get massive screaming meltdowns over rediculous issues. We are not screamers in this house, so I do not feel very equiped to deal with a screaming 14 year old. These issues that cause the world to screach to a halt do not seem to be major life issues. It could be because I (God forbid) suggested that a jacket might be a good idea on a 40 degree morning. It could be because I said no more netflix for the evening, come hang out with the family. Or, simply that one child feels jipped because he feels he hasn't gotten a fair number of times in the front seat. I feel like I am living with the sweetest most compassionate children one moment, and 3 Jekyl and Hydes the next!
My oldest son has additional challenges. He has a massive (baseball size) cyst in his brain, and hydrocephalus. He has had 7 brain surgeries to date. He is incredible, considering the anatomy of his brain. He is bright, articulate, and completely normal cognitively. If you met him, you would never know that he had been through so much. Not only is he in a place of transition just being a 14 year old boy, he is also in a transitional place medically. In his past, anytime he has had neurological symptoms - headaches, nausea, etc) it has been due to a malfunctioning shunt. The neurosurgeon would replace the shunt, and amazingly, Collin would be back at school before we knew it! He has bounced back from every one of his 7 surgeries remarkably well. Recently, however, he has been having symptoms again. The neurosurgeon has determined that the shunt is partially blocked, but has decided that the risk of going in surgically at this point is too great. So, we are in a place of managing symptoms with medication and essentially waiting for Collin to get worse. It is frustrating for all of us, and I think confusing for Collin. He is used to a fairly quick fix and that fix isn't happening. When he has massive melt downs, or when he holes himself up in his bedroom for hours on end, it makes it hard to tease out whether that is due to just being a 14 year old boy, or due to headaches, or stress, or what.
With all of these changes, I find myself with a whirlwind of emotions. I'm scared about the future. I'm excited about the possibilities and changes. I'm grieving the disappearing youth of my children. And, simultaneously I am bored with the mundane, every day routine. Every day of the week looks the same, and every weekend looks the same. I find that my girl friends are my lifeline, and my litmus paper that we are normal, because they all seem to be experiencing the same things at their house.
I try to remember that our journey is exclusively our own. I have to find out, and do what I love (thus the writing). My children are also on their own journey. Hopefully my husband and I can help guide them. Ultimately, we all hope that our children will turn out okay in spite of us. We are so lucky to get to watch these beautiful beings learn who they are, and what drives them, and what they are passionate about. I have a friend who says "You have to treat children like a bars of soap. If you don't hold tight enough they slip out of your hands, but if you hold them too tight they also slip out of your hands." I'm hoping that I will be able to loosen my grip just enough to keep them close.
I just turned 40. I have 3 children who are transitioning from kids to pre-teens and teens with all of the emotions and hormones that go along with that. I have been married for 17 years to a man that I love deeply, and who loves me, but we have had enormous changes in the landscape of our marriage in the past two years. He is also in transition as an individual. He just left a job of 17 years to go to work full time for a company that he has done consulting for over the course of the past 18 years. My oldest son has health problems, and the course of treatment has significantly changed over the past month.
My 40th birthday truly didn't seem like a big deal to me. All of my friends had already hit that mark, and they survived just fine. What is hard is the realization that my days of being a young mom, or a mom with young children are over. I will never again have a first smile, or a first word, or a kindergartner, or a first loose tooth. My boys are 14 and 12, and my daughter is 10. They feel very grown up, and are trying very hard to show me how grown up they are. I am loosening my reigns in a way. I no longer know all of the parents of their friends. I am no longer in charge of scheduling playdates. They are making these arrangements on their own. I love watching them blossom and take responsibility. For the most part, I love the friends and the activities that they are choosing, so in general I feel like they are on a good path. Most moments, I am impressed and very willing to give them independence. Then the coin is flipped and we get massive screaming meltdowns over rediculous issues. We are not screamers in this house, so I do not feel very equiped to deal with a screaming 14 year old. These issues that cause the world to screach to a halt do not seem to be major life issues. It could be because I (God forbid) suggested that a jacket might be a good idea on a 40 degree morning. It could be because I said no more netflix for the evening, come hang out with the family. Or, simply that one child feels jipped because he feels he hasn't gotten a fair number of times in the front seat. I feel like I am living with the sweetest most compassionate children one moment, and 3 Jekyl and Hydes the next!
My oldest son has additional challenges. He has a massive (baseball size) cyst in his brain, and hydrocephalus. He has had 7 brain surgeries to date. He is incredible, considering the anatomy of his brain. He is bright, articulate, and completely normal cognitively. If you met him, you would never know that he had been through so much. Not only is he in a place of transition just being a 14 year old boy, he is also in a transitional place medically. In his past, anytime he has had neurological symptoms - headaches, nausea, etc) it has been due to a malfunctioning shunt. The neurosurgeon would replace the shunt, and amazingly, Collin would be back at school before we knew it! He has bounced back from every one of his 7 surgeries remarkably well. Recently, however, he has been having symptoms again. The neurosurgeon has determined that the shunt is partially blocked, but has decided that the risk of going in surgically at this point is too great. So, we are in a place of managing symptoms with medication and essentially waiting for Collin to get worse. It is frustrating for all of us, and I think confusing for Collin. He is used to a fairly quick fix and that fix isn't happening. When he has massive melt downs, or when he holes himself up in his bedroom for hours on end, it makes it hard to tease out whether that is due to just being a 14 year old boy, or due to headaches, or stress, or what.
With all of these changes, I find myself with a whirlwind of emotions. I'm scared about the future. I'm excited about the possibilities and changes. I'm grieving the disappearing youth of my children. And, simultaneously I am bored with the mundane, every day routine. Every day of the week looks the same, and every weekend looks the same. I find that my girl friends are my lifeline, and my litmus paper that we are normal, because they all seem to be experiencing the same things at their house.
I try to remember that our journey is exclusively our own. I have to find out, and do what I love (thus the writing). My children are also on their own journey. Hopefully my husband and I can help guide them. Ultimately, we all hope that our children will turn out okay in spite of us. We are so lucky to get to watch these beautiful beings learn who they are, and what drives them, and what they are passionate about. I have a friend who says "You have to treat children like a bars of soap. If you don't hold tight enough they slip out of your hands, but if you hold them too tight they also slip out of your hands." I'm hoping that I will be able to loosen my grip just enough to keep them close.
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