I live in a creative community that inspires me. With my family and friends, I create...memories.

Friday, March 10, 2017

Trump and Mutation

Six Lessons I've Learned to Carry On

Since the inauguration of President Donald Trump just 50 days ago, I have felt a strange empathy for friends, family, and even strangers. Unwittingly, they have entered a space I’ve inhabited for the past five years, and I have a new kinship of spirit where for years I’ve felt many emotions alone. I’m sorry to see this fold grow, because it’s not created in the successes and progress of life. But it can produce a progress of spirit, a closeness of community, and a re-purposing of focus. For weeks, I’ve wanted to connect the emergence of disbelief, grief, questioning, and outrage with our family’s rare disease experience to draw lines around this commonality of spirit and to provide some hope.

Watching my friends in the weeks following Donald Trump’s inauguration, I have been reminded of a time in our lives that most people didn’t intimately share with us -- that time after Hannah’s diagnosis. My most important story is not about politics, but it is a narrative that is always seeking redemption, lives well lived, and an ultimate future free from pain.

I suffered from depression after my first child was born, and I struggled throughout his infancy. After a long and unproductive labor, I had a caesarean section, and I was disappointed in my delivery. Things did not go as I had planned. When our son was three, our daughter Hannah was born, and I experienced redemption. Her birth was a successful VBAC, and it seemed that all the wrongs were being righted. My isolation and loneliness with my son were corrected by being a part of the MOMS Club of East Nashville, and little Hannah revealed herself to be kind and generous and remarkably strong and outgoing. She was growing just like a weed, and her brother was also growing like a weed and was as smart as a whip, and about five years into this parenting thing, our fortunes had finally turned around. There was a new era of hope in our family.

Our CCHS International Community
Then, suddenly, in August of 2011, Hannah collapsed with total respiratory failure. She was diagnosed a month later with CCHS (congenital central hypoventilation syndrome). The sense that this can’t really be reality and the sorrowful, overwhelmed feelings that many Americans are feeling right now? I shared these emotions! And I still do. I’m writing this because I want you to know that there are amazing ways to carry on. There’s amazing work to be done in the world. All of the gifts that you have can be put to new and different uses, regardless of your circumstances.

As you will see and are experiencing, your priorities shift, and your way of being can fundamentally change, and that is not necessarily bad for most of you. For our Hannah, it’s been painful. For immigrants who are being turned away at our borders, it’s heartbreaking. For people who are being or will be denied health care, these changes are a terrible thing. I have no counter to that -- it’s just awful. But for you who are reeling now and sorrowful and shocked and hurt and can’t believe that this is the America you live in, perhaps the hard-won insights that my family and I have gained over the past five years since diagnosis can help you.

1. Be a Vocal Advocate. Be a Truthful Advocate.

I really cannot tell you the number of times I have had to advocate for Hannah. The example that always sticks out in my mind is cursing at a doctor in the local ICU who claimed he’d seen many patients with Hannah’s rare condition -- a boldfaced LIE. I screamed, “Bullshit!” at him, and he calmly said to me, “Ma’am, we don’t speak that way in the ICU.” He thought he was putting me in my place, but he deserved to have bullshit called on him. 

Near Trump Hotel on Pennsylvania Avenue in DC.
There are junctures for an aggressive response (as when a delicate life hangs in the balance and fabricating the experience to lead only increases the threat), but usually, coming to the table with the powers that be -- doctors, insurance, equipment providers, etc. -- with a finely crafted, often finance-based argument for my position, has been the best way to advocate for my daughter. Speaking the technical language of the other party and focusing on their bread and butter may be the best way for us to move forward as a country. Your adversaries place little value on your emotions. They want to maintain or gain -- power, resources, and prestige.

2. Shift Your Priorities
Suddenly things that seemed important in the past, past goals that were ingrained in you, seem unworthy of your time and attention. Having the nicest, fanciest house is less important than having a safe place to come to when we’ve been released from a stay in the ICU and slept on a fold-out chair or haven’t slept at all because the hospital staff don’t really know how to take care of our child, so we have to stay up all night to do it ourselves. Simply having a soft bed to sleep in, your family around you, and independence of action become so much more valuable than accumulating things and making them shine. 

When you’ve been protesting all day -- as many of you already have, when you’ve safeguarded the oppressed, and when you’ve volunteered or worked challenging jobs in public education or community health, for instance, you understand what I mean. Your individual blessings seem to flower before you, and your unmet “needs” diminish. 

Women's March on Washington, 1/21/17.
Likewise, meeting personal and professional goals may become less important than advocating for others and making the world a better place. Envisioning our children’s futures has already realigned many of us, but under the previous Administration, we might have taken for granted that their futures were going to be great -- filled with compassion and kindness and mercy to their fellow, we’re not so sure anymore. Putting your children’s futures ahead of your own is a powerful motivator, and it will push you to do remarkable things.

3. Streamline & Specialize Your Efforts
Research, whether medical or political, is a rabbit hole and can provide both a pathway forward and the absence of hope. To combat this, it helps to focus on your piece of the puzzle. For our family, the research focus for Hannah has been non-invasive ventilation and CO2 monitoring. Others might study sudden cardiac pauses and the need for pacemakers. All of our research and inquiry helps everyone with her condition, but everyone need not become an expert on every topic or every solution. We can share what we’ve learned with one another to make many roads smoother. Find where your interest lies and do in-depth research and solid work in that area. You can help others advocate for their areas of specialization without immersing yourself, as they can you. Offer to support and ask for support. 

8th Annual Valentine's Dance
Walk away from the technology and really connect to the people for whom you’re advocating. That will inspire your efforts and give you real meaning and purpose, more than just endlessly reading other people’s words and experiences. There are a lifetime of problems available for your consumption online, but you will not do your best work there. Your work is in phone calls, letters, personal visits, face-to-face conversations, showing up on the most important dates, and using your voice when the going gets tough. To do those things effectively, you need to focus. 

So, sign all the petitions online against all the things that hurt your spirit, but use what is unique about you to do your good work in the world. For instance, I can connect people and raise money. I can do this in both the political and medical arenas. If I’m not spending my limited time doing this, then I’m not serving my cause well. And while I’m advocating for healthcare for all sick children, I’ve been specifically called to the CCHS/rare disease battle.

4. Take Care of Yourself
As a special needs mom, so many people tell me, “You need to take care of yourself,” and they are right! Sometimes, that means I need to be alone to regroup -- to read or to sit in silence, and sometimes that means I need to spend some time with other people. Quite often, it means I need to be with my family, because they are the ones who inspire me, and I should prioritize them. Almost always, I need to give greater attention to my relationships with my spouse and my parents and brother because those are foundational people who, no matter what happens, will be there for me, and making those people a priority gives me the energy to go out to work in the world and to be a better advocate for my daughter. 

East Tennessee
Very often, taking care of myself means reconnecting with nature to see that all of these systems, these illnesses, these situations that we create as wounded human beings are small in the perspective of the whole world. That raises the spirits to carry on. I’m terrible at this, but exercising and taking care of the physical body are essential to take care of others. 

Turning off the chatter and the worries from time to time is necessary. There are periods when I need to nearly forget we have a genetic disorder in the house and just enjoy the basic beauties of life. You need this, too; you need to forget about the White House sometimes to restore your mind. Don’t forget that "you have to put your oxygen mask on first before you can help others," as I ruefully remember sometimes when I’m putting on my daughter’s breathing mask at night.

5. Don’t Worry What Others Think
Understand that some people are just never going to get your perspective. People have told us that if we prayed harder, our daughter would be healed of her random incurable genetic mutation. That’s like telling the parent of a child with Down’s Syndrome that if they prayed hard enough, the child would miraculously not have Down’s anymore. Our situation calls for something other than expecting physical healing (perhaps rather an interior healing of pride or the need for perfection in other human beings). 

Many people can not accept this diagnosis because it goes against their core sense of “prosperity gospel,” the idea that if you do things right, good things will come to you. There’s no basis for that in history or our Constitution, and if you’re a Christian, that’s really the opposite of the story of the Bible. The Bible says that you should expect suffering if you’re standing up for what’s right, because there is hate in the world, and much like our genetic disorder, it’s never going to go away. You will not be able to reconcile your strong emotions, beliefs, and values with some people, especially if you diverge on religious grounds, and that’s just part of the diversity of being. Be true to yourself, and acting out of compassion, carry on.

You will find that some people around you are a lot greedier than you expected. They are not going to come to your aid when you need it to defend you or assist you or others. They’re going to think first and foremost about themselves, and that might surprise you. It’s heart rending, but you’ll know which relationships you need to pursue, and you can free yourself from unnecessary energy while praying for those who have a hard heart towards the unbidden, unexpected, undeserved pain and suffering of others. 
ICU, Winter 2016
Here is the sad reality: we can’t eliminate hate in the world any more than I can eliminate my daughter’s genetic mutation. But, we can change our response to it, and we can control how we speak to others and how we get other people on board to care for and about the urgent situations we face and the hurt that we can help.

6. Perseverance Lies Within   
When I look back over the past five and a half years, I can’t believe my family has made it here in one piece. While I’ve aged more rapidly over that time, we’re actually doing okay; we’re a fairly typically functioning family. We will admit that we are perennially exhausted. When our girl is sick or we’re waging a battle for her, we are fully engaged and replete with energy for the task. When those times pass, we need a period to recuperate, but we must always be vigilant and alert. 

John Oliver was a guest on Stephen Colbert’s late night show a month ago, and he said of engaging with the Trump administration, "It's exhausting. It feels like Inauguration Day was 114 years ago. We have a long way to go. It's going to be hard. It's easy to be angry on adrenaline, but it's much, much harder when you are just tired, and this is going to be exhausting." Take moments to rest, but stay alert, and keep showing up; strength comes when most needed.

There are definitely times when you want to run away. You want to hide your head under the covers, or you want to escape. You simply can’t do that. You have to stay. You have been called to this time, and you can’t opt out now. The fight is too big. It’s true of me, and it’s true of my husband, and I can’t imagine that any parent in our situation hasn’t just wanted to run away or thought, “You know what? Maybe they’d do it better without me.” That’s absolutely untrue. If you’re reading this, this situation is NOT going to get better without you. You have a very big role to play, and you are being called to this moment to play it. The time that you spend fighting for a better world and serving others will only increase in value as years pass. 

Photo Credit: Hannah B at her 1st Protest.
I will turn 40 in a few months, and it can’t come fast enough. I feel tired and experienced in my bones, and it seems like my age needs to catch up, like a badge I’ve already earned. No one wants to look back on her life and think it a waste. In today’s world, it needn’t be.
Here’s where we converge in spirit: we didn’t deserve this, and it’s nothing anyone could have expected. We did all the right things, yet forces outside our control handed us a lifelong struggle. 

Am I bitter? Yes. Am I afraid? All the time. Is it essential that I overcome those things and move on with outstretched arms and an open heart? Absolutely. Let’s do it together. If the past five years have taught us anything, we have learned that we can’t do it alone, but even in unwelcome circumstances, there is beauty and joy when we fight on together.

I hope this has inspired you to see ways to do that and to know regardless of the situation that you CAN stay and you CAN fight. There is so much beauty in the fight, and you will grow SO MUCH, and you do not have to be thankful for the struggle, but you will be grateful for what you did to win the ultimate victory. Don’t forget...unlike a genetic mutation, this unexpected challenge can be reversed. Carry on!

Thursday, May 1, 2014

Vegan Lentil Shepherd's Pie

I am not a food blogger.  I have a blog to work out my thoughts about our uncommon life.  Lately, I have kept those thoughts to myself!  But I have had MANY requests for my Vegan Lentil Shepherd's Pie recipe, a riff on the yummy deliciousness available at our nearby music and vittles venue, The Family Wash.

I devised this recipe for a monthly vegan meal swap I was in through the MOMS Club of East Nashville.  However, I am a dairy-holic, so I usually make this with butter, lowfat milk, and Cheddar cheese in place of Earth Balance, almond milk, and vegan cheese.  I have no pictures because...I have no pictures.  (But shepherd's pie is like a pan of hidden deliciousness you shouldn't photograph anyway!)

The secret ingredient?  Miso, as well as some Bragg's aminos or soy sauce.  If you are trying to replace the umami richness of a meat like lamb or beef, these ingredients can help get you there.  Or so I have heard; I don't think I've ever eaten lamb, and beef...well, it's been at least 25 years methinks!  Feel free to go wild with the thyme and rosemary to amp up your flavor.

Happy eating!

Vegan Lentil Shepherd’s Pie
Printable Recipe
1 cup brown lentils, sorted and rinsed
2 lbs russet potatoes, peeled and chopped
4 Tbsp Earth Balance or margarine
1 large yellow onion, chopped
3 medium carrots, diced
3 celery stalks, diced
2 garlic cloves, minced
1/2-1 cup almond milk, to taste
1 cup vegetable broth (I like Better than Bullion), heated
1 Tbsp miso paste (or extra of the following...)
1 Tbsp Bragg Liquid Aminos or soy sauce
1 cup frozen corn (TJ’s organic is great!)
1 cup frozen peas (ditto!)
2 tsp dried rosemary
2 tsp dried thyme
1 cup vegan cheese, optional

In a saucepan, cover lentils with an inch of water and bring to a boil.  Continue to boil, adding water as necessary, until lentils are tender.

In a separate pot, cover potatoes in several inches of water and bring to a boil.  Continue to gently boil until potatoes mash easily with a fork.

In a large non-stick skillet over medium-high heat, melt 2 Tbsp Earth Balance.  Sauté the onion until beginning to soften.  Add the carrots and celery and sauté for several minutes longer until starting to soften.  Add the garlic and cook until fragrant, not more than a minute.  Add the vegetable broth and bring to a simmer.

Drain the lentils and set aside.  Drain the potatoes and return to the pot.  Add 2 Tbsp Earth Balance and mash.  Add almond milk gradually while mashing until you reach desired consistency (we like the mashed potatoes thick).  Season with salt and pepper to taste.

Preheat the oven to 400 degrees.  To the skillet onion mixture, add the miso paste and the Bragg aminos or soy sauce.  Stir well to incorporate.  Rinse any excess ice from the frozen corn and peas, drain, and add to the skillet.  Once thawed, crush the rosemary and thyme in your hand and add to the skillet to release flavor while the frozen vegetables continue to cook.  Stir in the cooked lentils.  Taste for salt and pepper.  The lentil mixture should be thick with a slight bit of liquid.  If it’s completely dried out, add a little water.  If it’s soupy, let some of the liquid cook off.

Lightly oil an 8x11 to 9x13 baking dish.  Pour in the lentil mixture and level the top.  Add the mashed potatoes in dollops and gently spread with a rubber spatula to cover the lentils.  Top with vegan cheese if you like.

Bake in the center of the oven for 30 minutes.  The dish can be fully prepared in advance except for baking and refrigerated.  Leftovers are excellent re-heated.

Tuesday, September 4, 2012


I pray for H-Bear to be completely healed of her CCHS.  I know tens, perhaps hundreds, others have prayed this for her.  Thousands across the country and around the world have prayed for children and adults with Congenital Central Hypoventilation Syndrome to be completely restored, their automatic functions to be intact, their need for machines to regulate their breathing while asleep, or even awake, to be erased.  And yet, there is not a single story of this happening.  A lack of faith?  I know many of these families, and I doubt it.

H-Bear has been healed.  When she experienced acute respiratory failure, she could have died, but she didn't.  Every night, she breathes so little on her own that she could perish or suffer brain damage, but she hasn't because of her mechanical ventilation.  She's actually very bright, with an instant lyrical memory that astounds even Mommy, the repository of ten thousand songs.  With each and every cold, that common bugger of childhood illness, she needs her BiPAP while awake, and even then, she sometimes needs more support and goes to the hospital.  And she is healed.  She returns home to life, with a gorgeous smile on her face and two dancing feet ready to take on Robert's Western World.

Do I wish she could be completely restored?  Of course.  Will I ever stop praying for this?  Of course not.  However, I think H-Bear's life and our faith journey as we raise and love her provide a lesson in expectations.  Instead of being totally healed, she is healed every day that she continues to live well and every month or so when a simple illness does not end her life.  Were she born 100 years ago, this would simply not be the case.  We would have lost her already.  I remind myself, she has been healed.

I am a perfectionist, and many of my friends are as well.  We are over-achievers and just getting by is not satisfactory.  We have been blessed with capabilities, and we are convinced that we should use them to the fullest.  It's hard for us to accept good-enough.  It's personally hard for me to invest myself so much in this little angel.  I will never be able to provide enough care for her; every medical decision we make for her has risks and drawbacks in addition to life-saving benefits.  There is no perfection to be grasped.  There is good-enough, and for this, we should be thankful.  Good-enough means we get to spend another day with H-Bear.

When we pray for her complete restoration, we exercise hope.  This hope may not be for H-Bear's time on Earth.  Perhaps she will never be totally healed in this life, but someday, she will be completely restored.  She will sing -- and dance!! -- with the angels.  When we expect perfection in this life and nothing less, we are sure to be disappointed.  We must remind ourselves of the blessings among the hardships of daily life.  H-Bear's story is unfolding as one of repeated redemption, blessing, and healing.  When our hearts focus only on the elusive goal of perfection, we lose the joy of celebrating what has already been done, for H-Bear today, this month, this past year, as well as the saving work of Christ that gives us hope for the future.

Throughout our marriage, Josh has taught me that when my expectations are too high, I will be disappointed.  I have tried to teach him to dream and plan and hope for the future.  Now, we live in a very present middle.  We need Josh's ability to be satisfied with good-enough and my dream-making hope.  Together, we can raise not only H-Bear, but also her big brother M-Cat.  We'll not attain perfection in raising him, either.  Only one Father is and has ever been perfect, and we must endeavor to adjust our expectations of our lives as we embrace the blessing of our children today.

Sunday, August 19, 2012

The Irresistible Allure...

...of Band-Aids.

Know any kids obsessed with Band-Aids?  Of course you do.  If they have ever had one, a child wants MORE.  Band-Aids are super-fun, like temporary tattoos you can reposition and replace whenever you like.  You can identify yourself easily as a fan of Spider-Man, Perry the Platypus, or Cinderella, and their pleasant (or intense in the case of Perry) faces can peep up at you throughout the day.

I have heard from more than one mother of a child in daycare or parents' day out that a surprising by-product of their group childcare was a collector's passion for Band-Aids.  And, of course, the Band-Aid is the ultimate balm to a much-loathed vaccination; woe to the doctor's office that only has plain in stock!

However, I would hazard that our kids' Band-Aid obsession has a deeper significance than they, or perhaps even we, can articulate.  In a couple of slightly different ways, the Band-Aid attracts the attention our hearts are longing for.

As an adult, when will you wear a bandage?  When your wound is really ghastly or when you need others to know that you have been injured.  Kids are less likely to think, "I need to put on this Band-Aid so I don't get germs and dirt in this wound that could cause an infection."  But they will often show off their Band-Aids, hopefully giving them the opportunity to regale you with stories of their near-death disaster or draw your concern and kindness, and perhaps even a special reward!

Band-Aids are cool, the body art that kids love (ever known a toddler that didn't use that marker pack on their own personal canvas?)  Band-Aids attract special favor from the general public.  But more poignantly, Band-Aids fill a need for individual validation that humans are constantly seeking.

You have possibly experienced a physical ailment that couldn't be classified by doctors.  Your family or friends wished you would stop complaining about it.  You deeply want someone to validate your pain, but empathy was in short supply.  More likely, you've had a sickness of heart or spirit that was not understood.  You were unable to express your pain in words, and you so desired someone to crawl up next to your pain and help you push past it.

Enter the Band-Aid.  A small child lives in the moment.  The pain on which they're focused is the most immediate, and they need you, as a caregiver, to come up beside it and help them push past it.  There are many ways to go about this, but one which symbolically and even physically attends is the Band-Aid.  When a caregiver pulls out the Band-Aid, the child's feeling of pain is validated.  There may be no blood.  The skin may be completely unscathed.  This is unimportant.  Physical pain is a cakewalk for a parent compared to hurt feelings. 

And so we stock Band-Aids.  We offer them as a sign to communicate love and understanding, not just as a medical expedient.  The Band-Aid says, "I believe you.  I believe you are hurting.  I believe you need my help.  I want to help you."

"Do you feel better now?"  The answer is so often, "Yes," we keep doing this over and over through the years.

I think a lot about children and how they deal with pain, injury, medical procedures, and hospitalizations.  By and large they handle it better than adults would.  There are many reasons I hope to explore, but an important one is that usually there is someone alongside them who validates their pain, someone who would do anything in the world to take that pain away.  Even though their caregiver can't do that, they offer balms to the spirit and the heart that so many of us as adults lack when we are in pain.

Do you have any Band-Aids you can offer today?  I've received meals after babies and hospital stays, designer hand-me-downs in the midst of painful budget restraints, and phone calls and visits when I've been lonely.  We all still need our Band-Aids.  We still want special attention and adornment, but most of all, we want our feelings to reside not solely in our own hearts and heads, but to be real and shared, validated by someone we love.

Tuesday, August 7, 2012

The Forever Memory

I have been consumed by memories lately.  As I got M-Cat ready for his first day of First Grade, I took pictures with his backpack and lunch bag, and the whole family accompanied him to school, recreating a memory we don't have -- his very first day of Kindergarten, a memory I'd always taken for granted I would create...

On August 7, 2011, a little before noon, I took H-Bear to the E.R. at St. Francis Children's Hospital in Tulsa, Oklahoma, after having difficulty keeping her conscious in the morning, repeated vomiting, and the worst night's sleep we'd ever had.  Her breathing was labored, and I was scared but as my memories attest, fully unprepared for what was to come.  She had just celebrated her 2nd birthday two weeks before and the day prior we'd had a fun time around Tulsa visiting Uncle Hef and Aunt Katie:

Flying a plane at Tulsa's Air Museum

The E.R. staff got us back pretty quickly, and the first sign that something was very wrong was that her oxygen saturations on the fingertip pulse ox were 70%.  I saw a worried look pass between the two male nurses on intake, and they whisked us back to an E.R. bed where she got hooked up to oxygen pretty quickly!  I'd never really taken anyone to the E.R. other than M-Cat for some stitches when he was nearly 2, so it seemed surreal when they wanted to admit her right away.  She was put on the floor and began treatments for asthma.  This seemed to make sense.  We were in a new environment where the high temperature the day before had been 115 degrees Fahrenheit.  There was even an Ozone Warning.  Josh decided by evening to leave his first "alone weekend" in years and drive the 8+ hours to Tulsa to be with his baby girl.

Overnight we had some good, smiling moments, but she didn't seem to be responding to treatments as the doctors had anticipated.  She had been admitted on a Sunday afternoon, so the best and most staff were not on duty, and we didn't really see a doctor until Monday.  That doctor came in on rounds mid-morning and ordered H-Bear's first VBG (venous blood gas).  Her CO2 level came back at 110.  Deadly high, though we didn't understand that at the time.  He told us we were going right to the PICU and that H-Bear needed to be intubated.

I have never been so glad to have my husband by my side.  Over the next few hours, H-Bear was transferred to intensive care, where her new doctor let us wait a bit longer and test her again.  When her CO2 remained high, indicative of acute respiratory failure, he told us we really must intubate.  We left her in the hands of doctors and nurses and respiratory therapists and held each other in the bay window of the family waiting room, where we could see her doorway across the courtyard.

When we returned, our baby girl was knocked out on Fentanyl and Versed, a long breathing tube out of her mouth and tape across her face.  She also got a feeding tube through her nose.  Then, the long waiting and confusion began.  For 12 days in Tulsa, she remained intubated with no clear explanation for her respiratory failure.  A special sensor in her tube monitored her diaphragm pulses and doctors were mystified at the low level of muscle activity that would generate breathing.  In hindsight, the oxygen they were administering and the painkiller/sedative cocktail that coursed through her veins were both suppressing her body's will to breathe, but they were keeping her alive and reasonably comfortable.

I slept very little during those weeks, lost some weight in addition to most of August, and prayed continually for my girl to be restored.  I distinctly remember and will not forget...
  •  My brother sitting with us for an entire week, loving us
  • My dad flying to Tulsa and my parents keeping M-Cat entertained all week
  • Taking M-Cat to see Winnie-the-Pooh at the theater before he flew home with Grandma to start school
  • Our church sending a dear friend, Uncle Jon Jon to sit by our side for days after my brother returned to work and our family back home, and to run errands for us like picking up a DVD of ...
  • Shaun the Sheep, the only thing that seemed to consistently bring a smile to our girl's face
  • Denise's sister and brother-in-law (whom I'd never met) visiting us in the hospital and just hugging me while I cried and gushed
  • Cards and photographs and child-draw pictures and gifts and wads of cash that arrived in the mail from our MOMS friends
  • Sitting in the "solarium" with our doctor enumerating some of the awful things that could be causing H-Bear's distress (including one at which he paused and looked at us with the kindest eyes and said, "Oh, I really really hope she doesn't have that...that would be awful," -- and she didn't, thank God)
  • The on call PICU doctor we saw for one night who laughingly said, "Looks like Ondine's curse to me," explaining the mythical story of Ondine more than the CCHS that causes this condition
  • Many sleepless nights researching what could be wrong with her, including the night Ondine's Curse was mentioned, when I found the CCHS Family Network, which had a study of less than 200 families with CCHS -- so rare, I thought, "It can't be that.  How do these families live with this?"
  • The doctor who told us the morning we left Tulsa that the next course of action there was a tracheotomy and a permanent feeding tube

There is so much still so vivid, I could write a book of my memories of that short time.  I carry so many beautiful memories, too, especially when H-Bear was finally approved for a life flight back to Nashville:
  • Flying on the tiny plane over Nashville, I thought my heart would burst for fulfilled desire
  • The friends and family who came to Vandy to see us after so many messages and prayers from afar
  • The Resident who ordered the test for CCHS the very first day we were there
  • The doctor who listened to my research that Fentanyl and Versed could be causing her apnea, and took her off these standard PICU drugs
  • H-Bear successfully extubated 2 days after returning from Tulsa
  • A sweet friend coming to visit her and play on the regular floor, even though she couldn't walk or barely even sit up on her own yet

I remind myself of these beautiful memories, the things that went right.  I remind myself that we took her home for two whole weeks before we got the CCHS results back, and even after that she wasn't ventilated for another week and a half while we observed her at home on her pulse oximeter.  That other CCHS parents gasp now as they read this because they know their child, like mine, could have died during that time, and our child didn't by the grace of God.  That our child lived for two years with a condition that usually presents at birth, a blessed time filled with happy memories, a time to celebrate my brother's wedding (5 weeks after she was born), mourn the loss of Josh's grandfather (6 days after she was born), and acclimate a self-centered older brother to a new sibling.  How much we would have missed if her CCHS had presented typically at birth!  I recognize the blessing that her road has been much easier than most CCHS children, as has her family's.

At the same time, I feel loss and fear because of her unique trajectory.  When I go to Heaven and seek answers for things that have not made sense in my life, right up there will be, "How could my child live for two years with this genetic condition with no signs?  What caused it to suddenly catch up with her?"  I had a normal child through her second birthday, and I feel a sense of loss that I would not had she stopped breathing in the hospital right after her birth.  Instead of the joy of release from an extended NICU stay, the steps of weaning off the ventilator during the day, and learning to eat without a feeding tube, H-Bear suffered a sharp decline, and it has made me perhaps more fearful and less hopeful than many CCHS parents.

The memory that haunts me is how quickly she went from happy and well to nearly dead.
The day before her hospitalization in Tulsa.

I had PTSD before, but I'm not sure there's a category for our current experience.  Since last August, H-Bear has been in the PICU twice and the ER another time for respiratory distress.  Of the four rapid hospitalizations, three happened with little advance warning.  A happy girl was playing on morning, and could barely breathe in the evening, even with her ventilator's assistance more recently.  On each of those sudden occasions, she had been out in the heat preceding, so we have stayed inside most of the summer, incredibly dispiriting to our nature loving family.  I can't get past the memory, though, that keeps recurring.  I quietly wait for it to happen again, because I know it will.  It's nearly impossible to predict the timing.  The best I can do is be prepared and look for the warning signs.  We are getting better at that -- we kept her out of the PICU the last round and treated her at home, after given that choice by the ER.

Shortly after H-Bear came home on the ventilator, I drove past a park with my mom on a beautiful fall day and I said, "I don't think I'll ever feel carefree again."  A year out, I have learned to enjoy my children more and many simple pleasures I previously took for granted.  Nonetheless, the memories haunt me, and they are a constant reminder that I must be vigilant with this one, this precious life before me.  I try to remember the love and goodness, the uncommon generosity that we've received in the year past.

Tonight, one year, later, August 7th, 2012, H-Bear's sleeping with her BiPAP after a busy day.  First, we had a good visit to the pulmonologist ("I'm happy about this visit!" he declared.)  Then, we had some lunch and nap time at home.  We rounded off the day with a trip to our favorite bounce place, Monkey Joe's, where my little gymnast was on top of the world, later eating her biggest dinner in quite a long time.  We played dolls and watched U.S. women advance to the beach volleyball Olympic final (I think she'll make a great volleyball player someday with her 6ft+ projected height).  One of the best days we've had in a while, I'll hold on to this memory.

Thursday, May 17, 2012


Perspective.  When you are dealing with depression, perspective is crucial.  It seems that the counseling I once had, not to mention a slew of self-help and inspirational books I've eyed, are focused on changing our perspective.  Once changed, we can move along with life, our minds no longer playing games with us.

Once, I worked in an office.  I had a great salary and incredible benefits.  I complained about my work sometimes, but I really enjoyed it.  I enjoyed the sense of accomplishment I had, I enjoyed the people I worked with, I enjoyed having my very own office with four walls and a private door, lit with lamps I'd brought from home and my giant Moonstruck movie poster on the wall (I was working in a film school in New York City and living in Brooklyn, after all).

Back then, I had a fairly healthy perspective on my life.  I worked a bit too much, but I also did things I enjoyed, starting a graduate degree in a field I found interesting, spending lots of time with friends and my amazing husband, developing hobbies and interests, and worshiping God in wonderfully powerful ways, both at church and intertwined in the lives of a beautiful community of faith.

When I had my first child, my perspective shifted...well, it sort of fell off a cliff.  I was wholly unprepared and incapable of caring for this beautiful person.  My whole life up to that point was moot, a waste.  This child had needs I couldn't fill.  I wanted to escape -- all the time.  I eventually sought out community among other moms so I wouldn't feel quite so desperate.  That gave me a purpose I was having a hard time finding with this one little child who was to be my world.  For him, I was simply not enough and I never would be enough.

When my daughter was born, my perspective was altered again.  Now, I was really a Mother in my mind.  I had a newborn baby and a three-year-old with very different needs.  Their needs filled up my day, and it somehow seemed more worthwhile to spend the majority of my energy on two kids as opposed to one.  We were a Family, and I was the linchpin holding us all together.  Sometimes, I still looked for non-profit jobs online, but it seemed ridiculous for me to even consider working for peanuts and putting two kids in childcare; the economics alone made no sense.

One day, my daughter almost died from sudden respiratory failure.  After three weeks in the hospital, we brought her home without answers, but more thankful for our children than ever before.  We soon learned that she had a genetic disorder that necessitated life support and continual monitoring every time she slept.  It was a very unpredictable disorder aside from the standard need for breathing support.  Today, I never know if we will be in the hospital again tonight, next week, or next season.  She can go from playful and happy to respiratory arrest in less than 24 hours.  To say my perspective has shifted again would be an understatement.

My new perspective is bizarre.  There is no other word for it.  I'm still trying to figure it out, and I'm certainly not making sense to a lot of other people who perhaps once felt they understood me.  I'm not looking at life or even each day in a "normal" way.  It would be crazy to convince myself that our lives are normal.  There are very few people who share my perspective, and even my husband doesn't have the near constant burden that I feel...the sheer weight of my child's life or death, of her mental and physical health on my shoulders 24 hours a day, 7 days a week.  It's difficult to find inspirational messages that match my perspective.  The Bible doesn't seem to cover daily looking at your child and trying to discern if her life is threatened by something unseen like rising carbon dioxide levels in her blood and daily hooking her up to machines that keep her alive.  It's hard to maintain the perspective that God is in control when her life seems to hang on the medical decisions we as parents make for her.

Our perspective is unique, and that makes it hard to relate to us many times.  But your perspective is unique, and so is everyone else's really.  We might cleave to others who have similar perspectives, and in doing so we begin to feel like our perspective is somehow better or fuller or wiser.  Or we might set ourselves up against others with different perspectives to make ourselves feel superior...or just plain different, unique.

The current "Mommy Wars" highlight how different perspectives can cause strife.  Not just about "values," these conflicts emerge from how we view the world and our lives in the whole.  A wise mother I greatly admire recently said to me, "I don't even think about organic food."  She is a craftswoman, a highly thoughtful and intelligent mother, but she lacks the resources to afford organic food.  I have no doubt that she does her best to offer her children a healthy diet and that if she chose to work full-time rather than stay home with them, she might be better able to afford organic food if she so desired.  Instead, she doesn't think about it.  That is her perspective on the world around her.  Can I fault her for it?  Should I judge her and think that she's not doing the "best" for her kids?

A lot of the decisions that are battled in the "Mommy Wars" come from a securely middle-class perspective.  Whether to stay home or not, whether to provide organic food or not, whether to breastfeed or not, all assume that mothers have full luxury of choice.  Women who do not anatomically make enough milk or whose babies have palate issues do not have a choice to breasfeed.  The poor, rural women among whom I grew up did not have a lot of choice to stay home or live organically.  Single mothers often have very clear choices.  Unfortunately, these are not choices made purely on values.  They are choices made out of one's perspective.  Taking into account the full sum of my life, of my responsibilities, of my resources, how do I soldier on?

Our perspectives are all different.  Built from the sum of our experiences, of our hopes and dreams, of the roles we must fill, they color how we lead our lives.  They color how we judge the people we encounter in our lives.  Sometimes, they make it hard to simply live out our lives.  If you want to truly love someone, if you want to touch a heart and not simply a need, try to wrap your head around her perspective.  It will be different from yours, your assumptions will be shot to bits, and your perspective will be changed, too.

Thursday, May 3, 2012

To Plan or Not to Plan

I am an unabashed Planner.  I am never happier than when my calendar is filled with lots of activities and my to-do list is full of do-able tasks.  I've even been told on several occasions that I should be an event planner (from people who really know me, like my mom).

Planning has served me well...I initiated and planned three successful Parent-Child Valentine's Dances for my neighborhood.  Not only were these heartwarming affairs to celebrate that great love bond between parent and child, but they also raised money for local charities and introduced many to our MOMS Club.  And of course, I planned that MOMS Club.  Which in as many years grew from one to three chapters.  That took some planning, along with some great fellow Planners.

In the past year, however, my love for Planning has been upended.  It all started when my child went into sudden and completely unexpected respiratory failure.  We didn't know for sure if she would survive or what life would look like at all for us.  In the midst of the chaos, the Children's Pastor at my church (I think it was her...remember this was CHAOS) gave me a new devotional book, Jesus Calling: Enjoying Peace in His Presence by Sarah Young (Nashville: Thomas Nelson, 2004).

Initially, the first-person voice of Jesus was pure comfort as we struggled at the beside of our child in the PICU...August 10: "Relax in my healing, holy Presence" (233).  August 12: "Come to me when you are weak and weary" (235).  August 17: "Find me in the midst of the maelstrom" (240).  August 18: "Anticipate coming face to face with impossibilities: situations totally beyond your ability to handle...Allow me to fight for you" (241).  August 20: "I am the God who heals" (243).  August 22: "Trust me, and don't be afraid" (245).  August 23, the day H-Bear's breathing tube was successfully removed: "Entrust your loved ones to me; release them into My protective care.  They are much safer with me than in your clinging hands" (246).

However, as I continued to read the devotional through the fall months, Jesus began to attack my need to plan everything.  October 10: "Trust me enough to let things happen without striving to predict or control them" (297).  October 27: "Many people are so preoccupied with future plans and decisions that they fail to see choices they need to make today" (314).  November 3: "Every time something thwarts your plans or desires, use that as a reminder to communicate with Me" (322).  On and on, the devotional made clear that my need to plan, organize, and orchestrate my whole world reflected a flawed desire to control my own life and a lack of trust in God.

I believe my ability to administer is a gift, but like all good things, too much can leave a life wholly out of balance.  I'd always envied my sister-in-law's spontaneous nature, expressed to a smaller degree in my husband, who is clearly NOT the Planner in our family.  I recognized even as a teenager that my need to line everything up before acting often built a roadblock to my own joy.

Yet, my role as a mother necessitated lots of planning and organization.  Inspired by a fellow East Nashville mama, I even created a little morning chant (recited monk-style):
     Lord, please give me patience
     Patience for this day
     Strengthen me, encourage me
     As I chart our way.
You can substitute wisdom, courage, joy, or whatever you feel you'll need in place of patience.

All day long, I was in control of my little ones, and I was indeed charting our way.  Some planning simply had to happen.  Getting children to school with good hygiene, clean clothes and all their supplies, making meals, and paying bills all required planning.  After H-Bear became sick, some elements of planning became crucial to her health and well-being.  No long car rides without her ventilator, since she was sure to fall asleep, gave way to planning all activities for when she was sure to be awake.  The sheer amount of equipment needed to keep her alive at night demanded some organization and forethought.  And the 50 -- yes, 50! -- medical appointments she had in the last 4 months of 2011 required some Planning.

At the same time, I began to realize I could no longer make calendars of fun-filled activities and family trips months in advance, because H-Bear could suddenly become ill at any time.  Two weeks ago, she helped me in the garden, and we made a pizza together.  As I was reading her bedtime books, I hooked up her oxygen sensor to find she was below our acceptable range.  By 3:00 a.m., we were headed to the hospital, where she stayed in the PICU for 2 days.  Completely out of the blue.

Such sudden and unexpected disruptions to my previously orderly lifestyle forced a new style of planning, one that I'd thankfully experienced just prior to H'Bear's initial medical crisis.  In early August of last year, we planned a four-day trip to Tulsa to visit my brother.  M-Cat would be starting school only 2 days after we returned, so I made sure we had all his "standard school attire" and other supplies in order before we left.  Thank God.  We were in Tulsa with H-Bear for two weeks.  A week in, M-Cat flew back to Nashville with his Grandma, who started him in Kindergarten.  Everything was ready for him to make a successful entrance into his new stage of life.  Mommy learned, and has not forgotten, that procrastination is inadvisable in a life that can change in a moment.  When there's opportunity, things in our home get done...often far in advance.  Now, that's some good Planning!

Another new trick that I've developed is backing up spontaneity with some of my beloved Planning and research.  When H-Bear and M-Cat are doing well and ready to seize the day, we have far fewer grumps-about-the-house times, because in my mental repository is a list of wonderful things I can't wait to do with the kids, many of which I've already researched online just in case.  When H-Bear is lowly and can't go to school, I pull out activities like painting and stickers that I've shelved knowing that lonely weeks in the house with little companionship or novel diversions aren't too far in the future.  This Planning is sort of like dreaming a beautiful life for my kids and family, while receiving the days as they come.  Mentally, it helps me to accept a difficult week and embrace a good one, because I've Planned options without putting them on a calendar.

As I have been able to let go of Planning, I have learned to enjoy life more day by day.  I still struggle with the balance.  Many of the memories I want to create require advanced effort -- excursions to the strawberry patch, a campout birthday party, trips to visit long-distance friends or to theme parks, or renting the RV M-Cat so earnestly desires.  It's scary to want, even need, to do things for my family that can't be done without putting a date firmly on the calendar.  I guess with any gift, we must learn how and when and how much we should use it.  Right now, I'm planning this afternoon as we for next week, well, I don't really know!