Half-heart, Whole Body: Part Two, B-R-A-I-N-S

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Recently, at the behest of our cardiologist, we met with a neuropsychologist who administered a great many tests and even called our son’s teacher for an interview. There was no recent trigger for this visit, other than my intense interest in the “Whole Body” health care approach to CHD and our recent trip to the Single Ventricle Survivorship clinic at Children’s Hospital of Philadelphia.

The field of neuroscience is advancing rapidly, and the leading pediatric cardiologists are realizing that you can’t put a body on life-support multiple times during a child’s most active developmental years and not expect something to happen. They won’t know what that means unless they study it broadly.

As promised, I’m not going to talk about my son in particular.So, after spending an entire day in Aurora at Colorado Children’s Hospital and returning for an assessment, here are some very general things that I learned.

1. Psychosocial skills are really no different from reading or math skills in the sense that your brain needs practice to get good at them. Some people’s neural pathways develop super fast with these skills (that would be the kid who everyone wants to play with at school), and some people have genuine disabilities, just like people have reading disabilities such as dyslexia. When that happens, the best thing to do is retrain the brain, as soon and as much as possible. This is akin to cognitive-behavioral (how you think and act on your thoughts) modification through therapies such as one-on-one with a therapist or in a group of people learning the same skills, and lots and lots of practice.

Personally, I was extremely delayed with this function as a child and it was one of the hardest skills I ever had to learn. I’ve gotten pretty good at it, I think. So if you have a socially awkward child, heart child or not, take heart because progress can be made with patience, time, and support.

2. Executive function is another skill that is not dissimilar to other neurological skills. It’s basically the big-picture ability that allows you to arrange abstract details (I need to open the closet door before I can hang up my clothes, but before all that I need to finish the laundry) into a big picture goal. Some kids do well with this and don’t fluster easily. Other kids (and adults) struggle with organization both of time and space. Again, in my case I still struggle with this in a spatial way, but I’m a good planner in other ways. The point is, this is a skill, again like reading and math, that is learned over time, and some people learn it faster than others.

3. Cognitive function is the more academic piece of the brain-pie. This is your aptitude for things you would learn at school or on the job. Math skills and reading skills fall into this area, and it’s the easiest one for lay people (ordinary folks like us) to understand. We get that some people are better at math than others, just as some people are better at sports than others. I think if we could just apply this metaphor to all the other neurological skills that children are developing before adulthood, we would be much less judgmental about childhood behavior and much more likely to find the kind of skill-tutoring that is right for each struggling child.

4. Processing speed is kind of like the processor in your computer. Some or our neural networks are just not super efficient and we’re slower at processing different types of information. This is why some people do better with images and some do better with sound when learning.  Slow information processing doesn’t mean someone isn’t smart or capable, it just means they take more time to get the information from their senses to form a response like catching a ball or finishing a math test.

Really, what I learned is the brain is super complicated and needs time to develop the many functions humans use everyday, but I’d picked that up in Greene’s The Explosive Child years ago. That book was so incredibly helpful when I was a new mom and helped me understand my kids weren’t trying to drive me crazy, they were just trying to develop neurological functions. Also, while the title of the book included the word explosive, some behavior delays and challenges are not always disruptive and are more subtle but no less important to the overall health of a child and family.

What was different about our recent visit was the acknowledgement that open-heart surgeries and CHD itself may impair functions that were not already strong in a child and compromise natural strengths. We see many gross motor skill delays in CHD kids, but no one used to look at things like executive function or emotional growth in a clinical way. It used to be all about the heart, and now we’re seeing more of the whole body.

While a closer look can be scary, what’s wonderful is that we are finally seeing that collaborative care approach between specialties that has been needed for so long! That is lighting up the pleasure center in my brain and warming my heart.

My Advice?

1. Check out Greene’s book (mentioned above) from the library or buy it. It’s a great book and I think every parent should get a copy of it and be forced to read it before you take your baby home. It’s so insightful, not because it tells you exactly what to do or what not to do, but why your kid might be doing things that drive you crazy, any kid, even the most healthy ones. I wrote to Dr. Greene about this post and his nonprofit site Lives in the Balance, and he was kind enough to write back and share that the website contains “lots of free resources that I hope will also be helpful to people.” Really, if you’re thinking about taking steps two and three of my advice, Greene’s books and website are a good start so you know what kinds of questions to ask your physicians, clinicians, and schools. And I was not paid or even asked to promote this book, it just was really that helpful to me as a parent to find my bearings early on in my children’s lives and I think we’re all healthier for that.

2. If you’re a heart parent or an adult CHD patient who had pediatric heart surgery, talk to your cardiologist about what your center is doing in this cross-disciplinary area. Our own recent visit will inform and improve our child’s 504 plan at his new school. In the past I used the 504 as sort of insurance policy, should we need special considerations around long hospitalizations or unexpected complications. Now, it’s going to be a proactive tool that identifies both growth areas and strengths and sets our child up to achieve, not fall behind. We owe it to ourselves to learn more about how the heart and brain are connected so we can get our kids (or selves, ACHD folks) the services necessary to catch up on any delays that may or may not be the result of CHD.

3. If you’re not a heart parent or are concerned about a healthy child displaying difficulty in one or more of the areas listed above (they’re not exhaustive, read the resources in the links for more information) talk to your pediatrician about your concerns. We don’t talk about the variety skills children need to develop enough. Unlike the standardized math and reading tests, there are many more skills that can be measured and strengthened with the right resources and support.

That’s all I’ve got on brains for now. Next time I’ll write about how the Fontan circulation impacts the liver and what we learned at the Single Ventricle Survivorship Program last August.

Oh, and thanks, Dr. Greene for responding to my email and all the work you do to help not only children, but also strengthening communities to support kids and their needs!

 

Half-heart, Whole Body: Part One, A Poster Child Retires

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During my first pregnancy my son was diagnosed with congenital heart defects that were “incompatible with life.” Through the following years of multiple open-heart surgeries and other invasive surgical procedures on and around his heart, I was very open about his medical history because I wanted and needed to be understood. I needed people who didn’t know anything about CHD to know about it. I was living through something I never expected when I longed to be a mother. What came of that was a connection with others living the same type of experience. In my selfish need to connect, my connections helped others with the same needs, and I founded two nonprofits and wrote a book. I made a lot of lemonade the first seven years.

That synergy of connecting with others led to messages from all over the world from people who connected with my book. Many people tell me that sharing our family’s experience helped them understand their own experiences better. I don’t regret writing the book, but what I wrote covered a discrete period in time that, though entirely real and true, has now passed.

We are not parenting a baby/toddler anymore. My child is not cured, and his health condition and our family’s acceptance and coping with it is a permanent part of our lives as long as he’s living. That’s a big truth to swallow, and if my book helps people taking the same bitter pill, then I am happy for that, but things have changed. My son is now nearly eleven-years-old, about to finish elementary school, and not remotely interested in being the poster-child for anything other than the next big Star Wars everything. I am in a different place too. Now that I’m parenting a tween, my point of view is no less relevant than when I was pregnant. However, my son’s privacy is more important than my perspective. His emotional and developmental needs are growing more complex. Now I’ve finally found the strength to trust my friends and family who haven’t lived through this to validate my experience. I couldn’t do that when it was still so new.

That’s a revealing truth isn’t it? I couldn’t trust anyone who hadn’t lived through submitting their child to life-or-death surgery because the only alternative to surgical risk was certain death to understand and support my emotional needs. My needs are no longer as great as they once were, and I the support I’m getting closer to home is more than sufficient now. It’s not that the non-CHD support I received was lacking in the past, it was that my need was as enormous as my trauma as a terrified new mother whose child’s most vital organ was incompatible with life. That was a pretty emotional tall order. This far out, I’m no longer living through a trauma. I’m dealing, and I’m blessed to be surrounded by loving family and friends who give me the strength I need to be the parent my children need.

Things are different for all of us now as we’ve aged and matured as a family. Recently, I’ve edged away from being as vocal or sharing our family’s experiences. The last few months I’ve struggled with sharing too much about our family and with sharing nothing at all. Cold turkey seemed the easiest solution to this challenge and, honestly, I could have lived with that. But that’s not the right answer either because we are not the only family fighting CHD, even if we’re on temporary leave from our time in the trenches.

Now, I’m seeking the right balance because there are other mothers, fathers, and adult CHD survivors who need to know things I know, not my opinions, but my knowledge. Now, it’s not just about the emotional validation or the healing of trauma, it’s about emerging science and facts that might save a child or young adult’s life. I know these things not because I’m somehow superior or genius. I know these things because I’ve advocated for my child and for the CHD cause for more than eleven years, and I’ve engaged with many knowledgeable people.I’m also advantaged in having an advanced degree in and many years experience communicating science and technology.

So, where does that leave me balancing my dual identity as a parent and an advocate? Where does that leave my non-poster child? Right here, at the end of a post where I never used my son’s name. Yes, you can easily find it out if you really want to, but what I’ve shared about my son’s personal life ends here. What I share going forward will be about CHD, my own feelings as a parent and writer, and other health advocacy topics. Sometimes, by necessity, the information I share will come from our experiences with my son’s doctors and healthcare. However, in those cases, I will only share generalities, not specifics. I’ll tell you why services or interventions are being offered for children like my son, not necessarily about him and not his specific situation.

I can’t quit CHD because it won’t quit my kid without taking him from this world. That’s my reality, but my kid deserves to be a kid and not worry about this shit until he has to. He will have to, but for now he doesn’t. This kid has more than earned his childhood and fought for his life; time to let him live it. My poster child has officially retired. He wishes you well and his message to other CHD parents and kids is, “Good, life is,” while channeling his inner Master Yoda.

I’m still here, and I’ve got some news about brains and livers to share with you in parts two and three. Hope you’ll come back and learn with me, and thanks for being on our journey up to this fork in the road. There was a moment eleven years, three months, and fifteen days ago when I felt alone in the world, but I’ve not felt that way since. Feeling good, I am. Now I hope I can help others feel better.

Next time: Half-heart, Whole Body: Part Two, Tin Men & Scarecrows, Hearts & Brains

 

 

 

@40 ~ things I’ve learned and am still learning

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In fourteen days, I will be forty. Here are forty little nuggets of knowledge I’ve picked up over the past four decades. Of course these are mine and are not intended for everyone . . . which leads to the first item on my list:

  1. Not everyone will like you, and that’s ok that’s GOOD! I don’t WANT everyone to like me because that would mean I was being who they want to see and not being myself. Authenticity is more rewarding than adulation.
  2. Revulsion is the undercurrent of both derision and pity. While derision is openly hostile, pity is more dangerous because it’s insidious and the bearer oblivious to the harm in it. Empathy and sympathy are much better than pity, which is really just a dismissive form of apathy.
  3. You can spend your entire life trying to assess another person’s intent or the cause of an effect, but it doesn’t matter. Whether harm done was intentional or not, harm was done. Accepting that is the first step to putting it in the past for both parties.
  4. What-ifs are dangerous and what should-have-beens are daggers that destroy what is. The past only holds footprints and impossibilities, and possibilities only exist in the future.
  5. Regrets are a crucial part of the landscape of the soul, but we should not be riddled with regrets. It’s the difference between a gentle slope and a road so full of pot holes that it’s impassable. I regret not going to Germany because I didn’t want to be a quitter in high school. I should have quit my obligation in a club and gone to Germany because for the club I spent days in hotel conference rooms . . . I’ve done that a lot in the last 40 years, but I’ve only been to Europe once. Regrets are good if we learn from them, not if we collapse into them.
  6. Facts are facts, but the truth is how we focus our telescope to the past. Not everyone’s eyes see the same distance, and what might be a perfect view for one person is a blur to another. Also, the distance we travel forces some adjustment on the lens through which we see our past.
  7. An abundance of compassion is required to fuel sincere forgiveness, especially forgiveness for oneself.
  8. There is neither risk nor reward in cynicism. Love and hope require a substantial risk to the heart, but are the only investments that ever really pay off.
  9. The best confidence comes not from what we know but from accepting how vast is the ocean of things we know not.
  10. Fighting suffering is the same as fighting water. The water always wins, and we just wear ourselves out and drown in sorrow. When we find ourselves in choppy waters, it’s probably best to let go, float, and just feel what we will. We’re no less wet drowning than floating, either way the sea will move as it will.
  11. While it would have been upsetting for my kids to see me cry when they were very small, now it’s best that they see it once in a while so they know crying is OK. Like I’ve always told my children, crying is like going potty, if you don’t let it out it will make you sick.
  12. The internet is chock full of things we’re not supposed to say, but one of my regrets is not saying something when a friend was in pain. So, now I say this, “I don’t want to pry into your personal business, but I understand this is a difficult situation and I am here for you.” That’s it. Something is better than silence. We suffer more in silence.
  13. The greatest power comes not from being special or unique, but from knowing I am neither. Not being set apart brings me closer to others.
  14. I am never the least important part of any equation, and I’m not afraid to walk away from something that’s not good for me.
  15. I deserve a good night’s sleep, every night.
  16. The house will never stay clean, so it’s best to set my priorities and reset my expectations.
  17. I should learn to cook even though I have someone who will gladly do it for me.
  18. Life is generally better with a dog.
  19. If patience is a virtue I’ve lacked for forty years, it’s not likely that I’ll develop it now, but I’ll keep trying.
  20. Coworkers can become life-long friends but work is temporary.
  21. Creating new traditions makes the passage of time more meaningful.
  22. Truly respecting the world comes from knowing where your feet fall and where your nose belongs.
  23. It’s really hard, but not impossible, to go back once you’ve owned a car with heated seats.
  24. Don’t say things you don’t mean.
  25. Mother like you mean it.
  26. If they’re comfortable, buy those shoes!
  27. Sunblock in necessary, even if you’re an indoor cat.
  28. Life is not a race or a competition. It’s just life and you only get so much, so why rush?
  29. There is not one minute of television that I would regret missing when I die (or even now). But Breaking Bad is really good.
  30. When traveling, always eat where the locals go.
  31. If I were meant to be a judge, I would have a black robe not a fluffy white one.
  32. Take care of your body, eventually it stops bouncing back like it once did.
  33. If faced with a Hostess cupcake, trade up for a Whole Foods cupcake. The nicer cupcake costs more and is harder to come by, thus better but fewer cupcakes.
  34. More art, more music, more beauty, more love, more hugs. These things cannot be had in excess, so get ‘em while you can.
  35. Retry foods you hated when you were a kid (red peppers and mayo), but it’s still ok to hate some (yellow mustard and onions).
  36. Your children will seem to grow up faster than you did because time compresses as we age.
  37. Stand up for what is right, even if you’re the only one not sitting.
  38. I’m not afraid to die and move on, but I’m not ready to leave just yet.
  39. Getting older is a blessing not a burden.
  40. I’m excited that every year I learn and relearn, and I’m excited that I’m still so excited to see another birthday! Happy birthday to me! In two weeks . . . told you I wasn’t patient.

 

Whatever you Say

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An early draft of my first book about my son’s several heart surgeries, included a chapter of upsetting things people said to me. These comments might be seen as microagression, or I may have just been hypersensitive.  My friends whose children are like my son loved that part. People who hadn’t lived through a similar experience were confused. One of those friends asked, “What can we say?”

That question led to a list of supportive things to say and do. Many people told me that was helpful. Since then, however, I’ve seen a ton of blogs and websites promoting, “What not to say,” or “What never to say.” For examples just google those terms. Some of those items are obviously rude, some are micoragressive, and still others are really examples in hyper sensitivity. This “you can’t say that,” movement annoys me and I’m glad I was more positive in my book because I find these lists angry, not helpful.

Recently, I heard a mother say something many mothers say, “You can take my kid.” Other variations are, “You want her?” or “I’ll trade you kids” etc. I understand all of us Moms get stressed at times. Personally, it doesn’t offend me even though I’m unlikely to ever utter those words, even when I’m super stressed.

Is there something wrong with making that joke? No, Moms have been saying it since the dawn of time. It’s like, “Take my wife, please!” I’m sure a widower in the 1950s who heard a comedian say, “Take my wife, please!” probably heard something far less funny than the rest of the audience. The rest of the audience, however, had every right to laugh.

Last night I wondered about all the women who’ve struggled with infertility hearing someone says, “You want him?” about a hyper child.  I thought of those of us who live every day worrying about losing our children, who’ve come perilously close to losing them, or worse have lost them. When we hear that, we can’t help but think, “Be very careful what you ask for.”

It’s not that people who say things like that are bad people or even doing anything wrong. It’s more like saying, “I’m feeling blue,” in English means you’re feeling down, but in German, it means you’re stating that you’re a homosexual. It just means something different depending on where you’re from.

Right now, I’m sitting in The Children’s Hospital for a routine appointment, and I’ve seen a dozen kids in wheelchairs and on ventilators, kids with cancer rolling around their IV polls, and a boy who lost the use of his legs in an accident within the last two months and is still inpatient. As a mother, this is where I began, and because of that somethings get lost in translation.

But, that’s OK. That’s just how it is, and I am finally now, after eleven years of this, able to hear someone say, “You can keep my kids,” and not  be offended, not be angry, not doubt that mother’s affection for her children. Because, finally, I’m realizing that just because where I come from changes the way I hear things, it doesn’t change the meaning of what a person is saying with her own words. It doesn’t mean she can’t say it.

Yes, it is nice if we can be sensitive to others, but it’s also important for the hypersensitive to understand that not everything is about us, and other people can’t help it if they don’t speak our language. Honestly, I the fewer people who know what this is like, to start your parenthood in a place like this, the better. A children’s hospital is the most miraculous place you never want to need.

The next time I hear a parent jokingly give away their child, I won’t think about how scared I am of losing mine, I’ll think of how happy I am that they don’t know any better.

A Day In The Life

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Thursday, February 20, 2014:

4:30 am: Woke up from a dream that began with me taking graduate classes in a Safeway store on Easter, getting into my car to drive home, and having no breaks, despite pulling the emergency brake backward.

4:32 am: Fell back asleep.

6:20 am: Silently cursed my cell phone/alarm clock as I stabbed the snooze button

6:29 am: When the second alarm goes off, whine to Sunny Morning Jim who is already showered and dressed that I hate mornings . . . after 22 years, he kind of knows this.

6:35: Scramble to my computer, boot it up, go to the Keurig God to beg for coffee, add cream. Make a bowl of cereal.

6:45: read email

6:50: review calendar – gasp because I forgot I have to go onsite for a 9am meeting and my head is one big cowlick.

6:55: prepare to login to first International Conference Call

6:59: Join conference call on mute, watch slides, take notes, crunch loudly – double check the mute button. Multitask, finishing email reading and responding to urgent-ish messages.

7:25: Gasp with relief when con call ends early! I can brush my hair!!!

7:30: get waylaid by 9 y/o daughter who needs her hair tamed.

7:35: Wet brush my bushy hair into  a submissive, yet sleek ponytail.

7:40: Get dressed in clean clothes and apply makeup as part of the endless cycle of adult acne two months shy of my fortieth birthday – silently curse adult acne.

7:50: Back to work, prepare for next conference call.

8:00: Second international conference call, get disconnected twice (not normal), take notes, let poor man in India go – it’s 10pm there when we’re done.

8:20 spent 15 minutes cursing while looking for my access  badge before driving to work.

8:40: arrive at work and smile that I live 5 minutes from the office.

8:45: boot up my computer and debate if I have enough time to get coffee . . . I do not.

9:00: have productive face-to-face meeting

10:00: Choose which of three conference calls I will join. Call runs over, but is productive.

10:55: Realize the coffee counter closes in five minutes and I’m SOL, go to cafeteria and get cheeseburger and tater-tots instead. . . mmmmm tots!

11:25: Run into old friend heading back to desk. Talk and walk. Check email, write email, deflect email.

12:00 more conference calls

12:30: more email authorship

1:00: Remember thing from 8:00 am meeting I was supposed to do and take care of it

2:00: pm unplanned conference call to finish taking care of the thing from 8:00 am.

3:00 picked up kids and husband from school (+1 unplanned play date)

3:15 Log back into computer at home, work on project management stuff, field Instant Message, and return email until 5:15

5:15 Watch Full House parody on YouTube posted to facebook by brother-in-law and note the extraordinary amount of saxophone in late 80s television, because it’s important.

5:30: play hide&seek w/ 9&10 year olds

6:00: eat yummy ham and homemade mashed potato dinner prepared by delicious husband

6:25: Drive home son’s play date whose aunt is at the hospital having a baby, require directions from 10 year old.

6:30-35: Get lost in my own neighborhood on way back from little boys’ house

7:00: participate in scolding ten-year old for hiding unfinished homework assignments, email 10 y/o 5th grade teacher to request meet up and a form I need to enroll soon-to-be 11 y/o in middle school, participate in much parental eye rolling, send 10 y/o to shower.

7:30: Run around the yard like a crazy person with the GoldenDoodle, start hacking because it’s freaking cold outside. Abandon crazier dog outside until I trick him inside by pretending a scented candle is a snack jar, and laugh that golden doodle needs hair cut and can’t tell the difference between candle and milk-bones. Dog reminds me that it took me 15 minutes to find my access badge hiding in plain sight and how many times I used the F-word 11 hours ago looking for not-lost lost badge when no one else was home.  Humbled by dog.

8:00: Reiterate to 10 y/o why hiding unfinished work and bad grades is not a good idea while snoopy/gloaty 9 y/o is in the shower.

8:30: Read chapter of library book to children on couch, because it’s important.

8:55: Get kids to bed with hugs and kisses

9:00: post random comments about the autonomy of women and the equity of work-life-balance and the perfection of ham-cooking-husband on Elizabeth Gilbert’s Facebook page – FACE!

9:20: Decide to write this post

9:30: Finish my wine, get a glass of water

9:40: Pull out the laptop and write this post

9:53: Finish, post, head for shower . . . I have another international conference call at 7:00 am and my kids participate in Battle of the Books at 8:00 am tomorrow.

I hope to work on my book some more over the weekend.

This is how my day usually goes.

Good-bye Good Friend

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Today my friend Jan died.  She was forty-six years old and celebrated a birthday just a couple of weeks ago.  Now, she’s gone. Even before I had a child with severe CHD, I thought death was pervasive in my life, from my dad and friend Mary, to coworkers and former classmates.  I felt I knew more than my quota of loss.

Since becoming a heart mom it’s different.  There was a time when every death shook me and reminded me that this family could have been our family. Then my rational brain took hold and my heart listened – that loss is personal, it is theirs, and the only thing it has to do with us is that they are our friends and we love them. It is a portrait of their pain not a reflection of our future.

I’ve made that rational transition over and over again far more often than I would like, just to cope with the imminent waves of death that rock this ship. Jan is different in the way Steve, Joanie, George, and Leslie were different.  They were older and had adult lives, and now they’re gone. I leaned on them and in return offered them honesty, affection, and respect.  I was a heart mom, but I treated them like grownups, because they WERE grownups, three of them were older than me and the other two were not much younger than I was at the time of their passing.

Losing a child in the CHD world is crushing because the family must move forward without their child and discover the strength to begin again.  Losing an adult is different.  Jan’s parents died before she did, so this is not a loss they must bear.  But for all the other adults with CHD there are the people who don’t know them because of their CHD.  They are touched everyday by people who love their “Janness” or their “Georgeness,”

My son is getting older and more and more people love him for his laugh and fewer and fewer will know about his heart.  This is how it should be, Because, those these five amazing adults lost their CHD battles between the ages of 26 and 67, they were each SO much bigger than what killed them.  To all the heart moms and heart dads who knew or knew of Jan and grieve tonight, please remember your kids are her legacy too and the more they live on their own terms with their own sense of humor, the richer everyone’s life will be.  Thank you, Jan, for always making that perfectly clear, and making life richer for all of us who knew you’re perfect heart.