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

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!

Thursday, April 26, 2012

The Most Important Things

Today, I've been trying to remember the most important things from my childhood.  Childhood was different 30 years ago.  There was no email and our mothers and fathers weren't on the computer every time we wanted them to read us a book or take us to the playground.

That's not to say that we were without I was musing on my childhood, I came inside to Fisk University's smooth jazz station on my radio and a piano tune that instantly reminded me of Mr. Rogers' Neighborhood.  That show and Sesame Street factor largely in my early childhood, and perhaps they taught me to be kind and neighborly and to count and read (as the latter appears to be doing for my daughter!)

Since H-Bear got sick last fall, we've had to give up a lot of the little "extras" I could provide and so enjoyed with my elder child.  No more playdates most every day, no frequent trips to the zoo, and lately, no super-snuggly cuddling with books (this makes her stop breathing for some reason -- oh my!)

H-Bear's illness has caused me to question the meaning of life in really significant ways, but today, I'm thinking of the basic bits of childhood I don't want her to miss, because to lose these would really affect her "quality of life" (a term that's thrown around sometimes when you have a kid dependent on a ventilator).  Thus, I'm trying to recollect what I remember most about childhood in its sweet rosy, innocent goodness.

A Happy Home...our home was always a place you wanted to come home to.  It was never fancy, but we had what we needed -- good food, a cozy place to sleep.  My parents let us decorate and organize our rooms however we liked, and it taught me early how to be a homemaker, I guess, but it also guaranteed me a safe place to return to no matter what happened in the outside world.  I had a place of my own, filled with my things, to process my life and learn who I was.  I miss those introspective days!

Going to Church...I was sort of surprised that this was so vivid in my memory, but I guess there was so much loveliness about it, despite any flaws I might not have noticed or remembered.  I hear kids thrive on routine, and going to church every Sunday was something we could depend upon.  The adults who freely gave of their time to teach our Sunday School and Children's Church taught us about the value of service-living within a community.  The church itself was grand with gorgeous stained glass windows, maroon velvet pew cushions, and a gigantic pipe organ behind the choir loft.  I think it's important that the grandest place I experienced as a child in an average small town was the place where we worshiped God.

My Brother...I am four years older than my brother, so I really don't remember life without him.  He was a very active and creative little boy, which meant that he could be a pest sometimes, but he was a constant companion, and he loved my company.  On family vacations and during the years when we lived out in the country, I had a built-in playmate, and I enjoyed his He-Man and G.I. Joe toys, though I was never much interested in his sports.  As we grew older, he remained a comfortable presence in my life, and when I moved to New York, I loved to have him visit.  I can still be myself, and I always learn more about myself, when I am with him.  He lives in another state now, and I miss him every day.  I hope and strive that my children feel the same way about each other in 30 years.

Being in the Yard...Mind you, I did not say "being outside," because that was always sort of a vague concept to me.  The parameters of our outdoor time were pretty fixed, from our small neighborhood, to family and friends' yards, to the municipal park.  Specifically, I loved to be in my own yard, where it was equally safe to play in the front or back.  The neighboring kids of all ages were always welcome and instant playmates there, but I treasured being alone, to sing and dance around or just stare at the sky.  There was a freedom and potential not to be found indoors, and there was a safety and surety of being in our very own yard. 

Going to School...Though I laud and sometimes envy my friends who do, I have never wanted to homeschool my kids, and perhaps part of the reason is that school factors so prominently and happily in my memories of childhood.  I was a good student, so I had a better experience than many, but there was something wonderful about attending the three schools in my small town district in succession, where I knew all the teachers and most of the students.  Bad memories are confined to run-ins with classmates and never to school itself.  Times have changed, but M-Cat goes to a great local elementary school, and I've seen him transform brilliantly into his unique, independent self away from home.  I worry about testing pressures and limited outdoor time and room for creativity, but so far, I've seen the opposite fruit in his life, and it reminds me dearly of my own beloved school experience, of how many opportunities I had to try new things and accomplish my goals at school.

Perhaps these are simple things.  I'm not teaching my children a foreign language as might benefit them.  They will not go into Kindergarten knowing how to read.  I've tried to grow food in our yard with only limited reward, and our craft projects have mostly turned to Play-doh and Crayola.  Lately, I'm not able to participate often with the MOMS Club I started to foster community for myself and my children, and we don't see as much of our extended family as I had hoped when we relocated from New York City. 

However, if I remember correctly, my children actually are experiencing most of the things that I relished as a child, and many of the things that shaped me into the person I am today.  Sometimes we get so distracted in all the "extras" we want to give our kids (every possible opportunity!) that we forget what we actually remember from our childhoods -- the constancy and comfort, or the lack thereof.  I hope my children remember someday that they lived in communities that saw their potential and wanted the best for their lives, that they had a cozy home and yard to play and grow in, and most of all, that they were part of a family they could depend upon.  These memories are not specific for me, but are infused into the very fabric of my being and inform the parts of myself that I like to remember.

Thursday, April 19, 2012

The New Uniform

In recent years, the at-home Mommy uniform has shifted to yoga or running pants, following years of derision garnered by the classic sweatpants.  When we head to Trader Joe’s or the neighborhood coffee shop, we might bring out the dress uniform – our boot-cut jeans and our “cool” t-shirts (featuring hip bands, eco-friendly messages, or local, uber-cool businesses).   However, for a real day in the trenches, nothing but stretchy spandex in a flattering black or gray will do.

I claim this uniform 100%, but it caught my attention last week when I spied a close friend walking down the street with both sons in hand.  Recently, since they started attending preschool three days a week, she’s been transformed, with shining long tresses and lovely, romantic skirts.  However, last week was spring break; both kids were home from school.  She came down the street in a t-shirt and yoga pants, with hair up in a banana clip.  Back to the uniform.

Perhaps you remember weekends before children (you may still enjoy them), when you’d worked so hard and played so hard that you couldn’t wait to hang out in your pajamas or sweats all day, reading the paper or watching old movies on t.v., satisfied that you had spent the week and most of your energy doing REALLY IMPORTANT THINGS that kept you VERY BUSY.  Certainly, you’d never don your Ann Taylor pencil skirt or pinstriped button-up on that weekend.  Well, the parent-at-home feels even more tired every day, ceaselessly doing perhaps the most important thing they ever will, most often with no hope of quiet reading or t.v. time in sight!

There are certainly practical reasons for the uniform.  Frequent trips to the monkey bars, down the spiral slide, to the painting table, on the floor next to the potty, or on the floor under the dining table; crawling through the grass; bending over the sandbox; and spending half the day cleaning and/or sweating necessitate clothing up to the task.  They transition effortlessly from that blessed time at the Y working off baby fat to the hysterical youngsters in childcare provided in lieu of the standard post-workout shower.  The stretch, comfort, versatility, and stain-hiding qualities of the black yoga pants can’t be beat.  They also don’t scream, “You need to lose a little around the middle,” like your favorite jeans might…they just keep on GIVING.

There are also psychological reasons why yoga pants are acceptable in the modern at-home parent’s mind.  Most of us are having kids later, after we’ve done other, diverse things in life.  We’ve worked in corporate offices; spent years in concert halls, clubs, and bars finding mates; and traveled, camped, and explored.  We’ve dressed up for church, weddings, funerals, and countless job interviews.  We recognize that different clothes fit different occasions.  We have dress clothes in our closet—clothes that would be destroyed in one day on this job.  Because we have directed our lives away from our own self-gain for a season, we’ll trot out the dress clothes when appropriate, but most of the time, we reach for the workhorses in our parenting wardrobe.  

I have beautiful mother who worked as a teacher most of her life, so she was around a lot when we were out of school.  I distinctly remember some of her favorite dress up outfits, because they connoted special occasions and special fun; likewise, I remember her wearing lots of red (indicative of her jubilant personality, I think, in contrast to my favorites, blue and brown).  But, mainly in my memories, my mother’s beauty radiates from the smile on her face, from how often she laughed and enjoyed being with us (and still does), from her golden hair and her long painter’s fingers, and from her kind light eyes.  Her clothes never mattered much to us.  If I recall them correctly, her swimsuits and cotton jersey shorts in the summer perfectly fit the bill. 

Similarly, I hope my kids remember that I heeded many of their calls for impromptu trips to the playground; pounced and tickled them spontaneously; played in the living room floor with them, where their puzzles and trains and books were always welcome; initiated and helped with many different craft projects; worked hard to keep their home clean and welcoming (especially for my dust-mite allergic H-Bear); and tried in our yard to grow them beautiful flowers and their favorite vegetables (their beloved tomatoes, carrots, and lettuce!)  In the production of these memories, the ones I pour every ounce of myself into every day, my uniform has served me quite well.

Thursday, April 12, 2012

The Go-To Girl

Sorry, blog...this is how our relationship is going to be.  You are going to come last A LOT.  After the husband with second-degree burns on his foot who can't go to work.  After the extra kid at home for spring break.  After the first kid with no Mother's Day Out either.  After all the Easter preparations.  After the special spring break trips and treats.  Because, I am the Go-To Girl around here, and you must wait your turn when memories need be made.

Thursday, March 29, 2012

A New Creation

I Create Memories was established in early 2011, a New Year's resolution that clearly was not kept!  At the time, I was actively involved in the MOMS Club of East Nashville, TN, which I founded in the spring of 2008 with some extraordinary moms in one of America's greatest urban "small towns."  The MOMS Club has proven a great vehicle for me to do something I love -- celebrate life's big and little moments (as its current President Kelly H recently pointed out to me!)  This beautiful, supportive group was going to feature here in many of the big-time celebrations, while my young'uns could take center stage in the quiet, littler memories.

The plan was to photograph and document the memories that I was creating as a mother and community volunteer, the frequently fulfilling work that I was doing outside the "workplace."  Creating things that are intangible -- events, ideas, moments, or even communities -- is how I have spent much of my free time outside the daily grind of raising young children, and I thought perhaps my endeavors could inspire others, or at the least, the blog could keep our many out-of-town friends up-to-date and archive our fledgling family life.

I plan to still do many of these things, but life is unpredictable.  When the blog was established, my biggest problem was how to fill a long day with two very different kids who couldn't yet play together.  In September 2011, my younger child, Hannah-Bear was diagnosed at age 2 with Congenital Central Hypoventilation Syndrome (CCHS) after spending most of August in the PICU.  Our problems got a whole lot bigger.  In a nutshell, H-Bear is dependent upon a ventilator any time that she is asleep, and will even be so at times of intense stress or illness (a bad cold put her briefly in the PICU again at the end of 2011).  She has some other problems, like temperature disregulation and allergies, that require near-constant monitoring.  I went from reluctant stay-at-home mother to helicoptering nurse-by-necessity rather quickly.

This blog will at times be the blog of a mother with a special-needs child, but more often, I will share things that are familiar to many parents.  This is no mistake.  CCHS has to be one of the weirdest conditions I have ever heard of.  During the waking hours, you would think my child is as healthy as a horse...climbing monkey bars at 18 months, trying to read at not-yet-three.  But, at night, she goes on life support.  Similarly, when she is not sick and her ventilator is serving her well, we carry on as a normal family.  But things can quickly change, and we are suddenly at the mercy of a team of hospital specialists and the goodwill of the family and friends who take care of our son, Matthew-Cat, and the employer that has so far been gracious to allow my husband time off work to care for his baby girl.

My perspective as a parent will never been the same.  Much like the heartbreak my husband and I, Brooklynites at the time, felt after 9/11, our parental innocence has been rent; the loss is profound.  I still face the same pressures and joys as an average parent, but some most people couldn't begin to imagine.

My battle is probably not yours, but we are all struggling to make the best of this life.  I hope this blog will go beyond our relatively unique experience towards that which makes us all put two feet on the ground in the morning and get going.  After all, I am still in the business of making beautiful memories for my children, my family, and my community, and in this service, there is great demand.