Jael, March 2008

Jael was a three year-old boy, also from Oklahoma City, who we met when we arrived in St. Louis for Henry’s transplant.  Jael had already been there for several weeks.  His mother, Luciana, and I became friends because of our similar circumstances but also because I could speak Spanish.  After we returned home from Henry’s transplant, I wrote this in my journal:

For Jael, a heart did not come in time.  He died exactly one month after Henry received his heart.  Jael with his coal eyes and spiky hair.  I never knew Jael healthy.  I only saw him blueberry colored, fighting for oxygen, listed as a 1A. Desperately needing a heart.  He had been in and out of the CICU the entire time we were there.  Occasionally, he was allowed to go stay with Luciana and his abuelita (grandmother) at the Ronald McDonald House.  He had a central port implanted to deliver life-sustaining medication. 

So many times Luciana would ask me what we had done to get Henry a new heart as if she suspected there was some ordering procedure she was unaware of.  It must have been hard for her to see Henry come into the hospital, visibly healthier looking than Jael, and get a heart the day he arrived.

Jael’s abuelita rarely left his side.  Because she was the primary caretaker for Jael at home while Luciana worked , she could, in some ways, get him to cooperate more at meals and with his medicines.  She understood some English but was more comfortable speaking in Spanish.  At the Ronald McDonald House, she would heat up plates of white rice and coo, “Mi amor, pruebes un poco.”  But Jael did not want to eat or play or sleep.  The kid felt miserable and it showed every day on his sweet, scowling face.

Luciana had to return to Oklahoma City one weekend to deal with bills and things around the house.  Many at the hospital questioned her decision to leave her child behind, myself included.  I was ashamed to find myself so judgmental.  There were many times when I wanted to flee Henry’s bedside, when I just couldn’t stand one more moment of this.  I reminded myself I had a support system back in Oklahoma City to take care of house matters.  Luciana did not.  She had lost her job, she could not afford air fare, she had to rely on a cousin to drive her eight hours each way.  She did not have the money on hand to pay bills over the internet.  She did not have the same choices I did. 

When our family got to leave St. Louis, I promised Luciana we would stay in touch.  She had expressed an interest in getting her GED and going to college, maybe to become a medical translator.  I told her I could help get her the information she needed.  We planned play dates for the boys and Jael grudgingly let me kiss him good-bye.

I was sitting on my front porch when Luciana called to tell me about Jael.  Henry was out with me that day when spring was trying to announce itself, inspecting my car tires -- an obsession he has always had.  When she called, I didn’t expect bad news only good because here was my child, playing outside just weeks after his transplant.  Didn’t Jael deserve the same?

Luciana is a poor mother, impoverished in all the ways that make navigating a medical crisis overwhelming.  She has language barriers, lack of reliable employment and transportation, unaware of the numerous social services available to Jael, unfamiliar with congenital heart defects and organ transplants.  Luciana was not married to Jael’s father.  He bailed as soon as Luciana informed him that their newborn had a bad heart.  Luciana is an intelligent young woman with this endearing, elfin boy managing all of this with only a fragment of the support and resources I had.  I don’t think Jael died because he was not deemed “worthy” of a new heart but I do question how doctors, nurses, social workers, etc. viewed this family.  I have witnessed, many times, an air of disgruntled annoyance from medical staff when working with a family where communication may be challenging. 

I will never forget one conversation I had with a transplant coordinator when I asked, “Is a member of your staff bilingual?”  She tensed up and replied, “Are you talking about Jael’s mother?  She understands more English then she is letting on.”  I was so stunned by her response that I did not say all the things I should have. Such as the fact that understanding English is not the same as being able to speak English.  That understanding certain words does not mean you understand the entire context of a conversation.  Or that people like me, with a good deal of college education, and, more importantly, having been immersed in this medical world for six years now, still struggle to understand all the jargon.  Or that translation is not merely converting vocabulary, there is also the need to understand the background from which both participants are coming to the conversation.   That moment, one that did not even impact my own child, was one of the most disappointing experiences I’ve had with medical personnel.  It left little doubt in my mind that Jael's family was judged very differently from Henry’s and that bigotry played a role in that.  It does not matter that Luciana is an immigrant or poor or single or does not speak English fluently.  Jael needed a heart just as badly as Henry.  I will always question how this family was perceived and regret that I did not inform this one coordinator that her own ignorance was showing.

When Luciana called to tell me her son had died, she also needed help figuring out how to transport his body back to Oklahoma City and arrange for a funeral.  Reverend Hal, the chaplain at St. Louis Children’s, stepped in and found the funds to arrange for the transport.  Between Luciana, Hal and myself serving as the translating go-between, we found a funeral home and cemetery.  The burial cost was too much for their family to bear and my mother insisted that she pay for part of Jael’s service.  I am not surprised she did this. She is the best sort of mother and understands all too well the heartache over losing a child.

 The funeral was on a rainy day and I arrived with a teddy bear with a heart on its chest, holding miniature pinwheels .  When Henry and Jael were in the hospital together, they were often given pinwheels to blow to help them increase their lung capacity.  Both boys hated this chore and had much more fun hurling the pinwheels at one another.  It was one of the few times I saw Jael smile.

When I walked in to the funeral, Luciana wrapped me in her arms and wanted to know first how Henry was doing. Yes, that is just as bittersweet as it sounds.  We cried and the abuelita came over to express her appreciation that I had come. “Que Dios te bendiga,” she whispered.  May God bless you and I felt weak in the knees that my blessing was so near to their mourning.  I did feel guilty that their beautiful boy had died and mine was already back in school. 

A slide show of Jael ran on a continuous loop and I realized what a fun kid he must have been in those few years that he was moderately healthy.  His caramel skin absent of the cyanotic blue tint, running across someone’s patio with smeared birthday cake all over his grin.  This was the child I never knew. Luciana’s little boy whom she had pinned all her hopes, committed to giving him a better life than she had.

Henry visits his beloved Malley during her recovery in May 2008.  Check out how plump the steroids made Henry.  Or it could be the KFC we let the kids have for dinner – the ideal cardiology diet!

May 2008

Three months post transplant, it’s like I adopted a new kid and left my puny one behind.  There are stories and some research that shows organ recipients “assume” facets of their donors’ personalities, interests or dislikes.  I know this makes no medical sense, that because Henry has a new heart, he is a different person in spirit.

But he is.  Maybe he just finally has the energy he needs to manifest full naughtiness.  I can barely keep up with him.  He is down to just three medicines now – two anti-rejection drugs that he will probably take his entire life and a medicine to protect his digestive system from the harshness of these meds.  I am incredibly grateful we got off of the steroids.  I can live with the increased hair growth, although my unibrow child also has fangs for incisors so he looks like a toddler werewolf. But the steroids also gave him ‘roid rage and made him an insomniac. Each night he tore all the sheets from his bed, threw all his books off the shelf and tried to topple over furniture.   He acted like a Tasmanian devil. I just gave up, dismantled his bed and let him sleep on the mattress with whatever quilt or towel he had not managed to hurl from his room.  Quality mothering, I know.   For what seemed like three weeks straight, Henry would appear by my bed before 6 a.m., usually with a package of bacon, and announce, “Hey, you. Breakfast.”    He was none too happy if I refused to be his IHOP slave before sunrise. 

The child remains belligerent, now he just has more energy to be demanding. And he is ready to light the world on fire.  Never one to take “no” for an answer the first 348 times, Henry will insist “I wanna go, I wanna go. Let’s go!”  Where doesn’t matter – he just wants out of the house.

Part of the problem is that, since he has returned with his new heart, he has become used to people gushing over him.  He walks into church, school, the grocery store and proclaims, “I’m here!” as if the produce guy had been pining for Henry all day.  He thinks he is Paris Hilton and we’ve all become his entourage.  The child needs an agent because there have been a series of wonderfully generous fundraisers for him. Henry will be devastated when his celebrity status ends.

His fans let him get away with stuff no six year-old boy should do.  I walked into his Sunday school class and they were letting him dance on the table.  If Henry wants nine cookies, then by God, let him cram his sweet little face.  A mother is not allowed to complain about her newly healthy child because we have been delivered a miracle.  Except that my miracle does things like pulling up the carpet and telling our neighbors I am a “bad mommy” because I won’t let him operate the lawn mower.  If I chastise him in public, like when he is smacking another child with palm fronds from the Palm Sunday ceremony, I am the one chastised.  A gaggle of lovely church women rush to his defense and say, “Oh now, he’s just a little angel.  Let him play.  He’s just using that new miracle heart.”  Sure, it’s all fun and games until Henry is holding up the local 7-11 at fourteen.

He is getting away with a lot, he is getting a lot out of life now.  On Mother’s Day weekend, Henry jumped for the first time.  Maybe my kid only has a three inch vertical, but he had never had the muscular strength to get both feet off the floor before.  Jumping, able to peddle his trike, off of diuretics so that he can truly be potty trained.  Small milestones that should have happened years ago and now that they are here I am a bit sad because it means that he is no longer my baby but a young boy.  One morning he announced that he wanted to get on the school bus by himself.  Gwyn had always walked him to the curb and lifted him over the big bus steps.  Now he was ready to do it himself – open the porch door, trot across the yard with an Elmo backpack almost as big as him and climb those steps himself.

The bus doors closed behind him and, like all mothers when they first send their children on their own into the wide world, I felt incredibly proud and dissolved into tears.

The Second Law (October 2008)

The Second Law of Thermodynamics says:  “The entropy of an isolated system which is not in equilibrium will tend to increase over time, approaching a maximum value at equilibrium.”  Or so says Wikipedia. I haven’t any vague clue what that means.  Truth be told, I can’t tell you what thermodynamics is unless it means, “The study of geeky stuff way beyond Erin.”

But I read somewhere a spiritual reinterpretation of this law that has long stayed with me.  Here the Second Law of Thermodynamics is: As a function of time, things change.

Time changes things.

This part of the story, where I somehow quantify how far we’ve come, is difficult to write because I cannot yet measure the distance between Henry’s birth and my boy today.  I know it is a distance far greater than the mere six years of a child’s life.  It was a lifetime for me and not just in that smart-ass way of “Damn, did that child age me!”  I was a young, naïve, optimistic mother then.   Now I live with the aftermath of my son’s struggles and the redemption given to me by God.

I have always known I was intelligent, but now I see I am wise.  Having brains is great.  It can land you a great job, lets you understand how to program the DVR (which my brain has yet to accomplish).  But being wise shows you how to live. Wisdom illuminates the pathways you should choose, including those of the least resistance, and lets you live in peace with the things that cannot be changed. 

Henry is nine months post transplant and doing remarkably well.  We’ve had virtually no complications since coming home and Henry takes only two anti-rejection medications versus the several he was on before.  Henry is a different child and he knows it.  I watched him recently running back and forth along the sidelines of Ian’s soccer game and he was just so impressed with himself because he’s never had the energy to run before. We took his shirt off because it was bloody hot and I knew people stared at his chest scars.  Maybe they thought, “Poor little boy.”  I was proud of his chest and my boy.  There isn’t a need to feel sorry for Henry.  He’s a champion and his mom’s hero.

Six years ago, I knew nothing of this world where children endure unimaginable hardships to their little bodies and parents witness it helplessly.  I thought that the worst that could happen to one of my kids was a broken arm or chicken pox. I thought my college degrees would secure for me a fabulous profession.  I did not know that I would use that education to negotiate with doctors and insurance companies, read complex surgical notes and become an advocate for organ donation. 

I thought my marriage would last forever.  I thought I’d always be there for all three kids.  I thought my vacation days would be spent at far-off destinations, not PICU wards.  Six years ago, I would not have had friends like Pattye, Janet, Heather, Misty or Taryn.  I didn’t think I would attend funerals for children.  If you had said “heart transplant” to me six years ago, I would have assumed you were talking about a sixty year-old man and not my son.

Being so immersed in Henry’s struggles, I became tunnel visioned for many years.  Our family lived in intervals between Henry’s surgeries.  Constantly on my mind were issues like getting Henry an RSV vaccine, scheduling his next heart cath, ensuring someone was here to stay with Ian and Gwyn as Henry headed back for another surgery.  With Henry finally heart sound, I feel like we’ve been released from the zoo and back into our natural habitat.  Except that we are still trying to figure out what is natural and normal.

I am, for the record, mightily proud of my family.  Henry is thriving.  He is still his defiant self but now turbo-charged.  Ned and I joke that we may take him back to St. Louis and ask them to dial down the “cardio juice” some. His teachers literally send home essays reviewing how naughty he has been in class.  He simply can’t be bothered to engage in learning.  There are bulletin boards to dismantle, snacks to steal and classrooms to sneak out of.  It’s as if Henry knows he has years of naughtiness to make up for.

Gwyn is an honor student, in the band, drama and student council.  She is stunning and wise and I can’t believe she is mine.  Ian remains the most easy-going child, willing to try anything although some of those choices are questionable.  Both older children are church acolytes and Ian does his part with such solemnity it would put the Vatican to shame. 

As for myself, I’ve also came a far way.  Henry’s life made me brave. I found Henry the best and most compassionate medical care that I could between Oklahoma City, Stanford and St. Louis.  I also became comfortable questioning “medical expertise” and seeking second and third opinions.  I finished my PhD and got a real job in the midst of all this.  Some days I was rageful or grief-stricken and even hopeless.  But I made it to the other side.  One gift to come from this is that I learned I am both strong and helpless.  I can get through anything but only when I turn it over to God.  He’s got a better plan.

 I chose to engage with the things that truly spoke to me, not just those I had been told-- as a mother, wife, Christian, student and professional -- to care about.  I attended St. Paul’s with a renewed sense that God and all the St. Paulites were immeasurably good for my spiritual growth.  They are my bounty, God’s promise delivered to me as my praying, faithful, hugging, joking, casserole-cooking clan.

There were also seasons when I was hard on or neglected people. I gave up on my marriage.  It did not survive our mutual lack of attention toward one another.  By the time we were considering the transplant route, our marriage was over. Today, Ned and I are good friends and everything between us vastly improved once we settled on divorcing. Best of all, we each became better parents. A new man and his wonderful children expanded my family.  Jack, Gabby and Kelby have fully wormed their way into my life and I am eternally sweet on all of them.  We are on our way to building a family the best way we know how: going to church, not worrying too much what others think and winging it, loving one another, day by day.

For many years, I was tired of people not being grateful for their blessings.  I was excessively judgmental.  Even with Henry so close to losing his own life, I often forgot how lucky I still was.  I had three beautiful children when many struggled with infertility.  My kids never worried about their next meal, even if all their mother could “cook” was saltines artfully dabbed with peanut butter.  I did not live in a war zone, I had a reliable car, I had health insurance.  I had not buried a child as some of my friends and my own parents had.  But I still found myself internally dismissive when people talked about their tennis elbow or not being able to buy a new SUV or their own grief over losing a grandparent or a  pet.  I forgot that, in the moment, sorrow exists without measure.  It just hurts.  Time changes things but how long that will take can only be known by the one enduring it.

I also learned to care a lot less.  As a mother, I decided it would be okay if I never joined the PTA or learned the fine art of French braiding.  In many ways, I felt parts of me just eroded.  No longer could I muster the creative energy to have a Christmas tree with a theme – unless you count the year Henry put $33.00 worth of postage on the bottom third of our tree (nothing celebrates the birth of our Savior like commemorative Elvis stamps).  Holiday decorating used to matter to me, obsessively so.  Now, our Christmas tradition is to go the post office and pick out a “Dear Santa” letter from a less fortunate family and try to make their wishes come true.  We have done this for several years but may have to consider alternative altruism. This is because one year, as we brought Christmas dinner and toys to our chosen family, Ian became so fascinated with the father’s parole monitoring ankle device that he requested one from Santa on the spot.

After years of witnessing other families in children’s hospitals, I decided our family was going to give back.  In the spirit of charity, I dictated these activities as mandatory.  My family and friends, ever indulgent of my tyranny, have served meals at our local Ronald McDonald House, parties at Children’s Hospital and collected thousands of toiletries, snacks and blankies to share with PICU families.  I became involved with our state’s organ donation agency (LifeShareOklahoma.org) and Family Advisory Council at Children’s.  Team Henry became much more than fundraising for one little boy.  True, it feels like I have an obligation to give back but the rewards I reap are something else that cannot be measured.

God gives us the gift of making us wait whether we do so in fear, contemplation or just the drudgery of our day-to-day lives.  During Christmas of 2007, when we first learned a transplant was Henry’s only option, I wrote:

I am sure I will have more to say about waiting once (if) we make the transplant list and live for that phone call.  But waiting has been on my mind a lot this week.  My state just endured a horrible ice storm leaving more than half a million people without electricity.  My neighbors had no power for ten days.  Mine stayed on (God figured I had had enough trauma this month).  At first people were frightened. Hotels were booked, generators ran out and it was bitterly cold.  Naturally, fear moved to anger and resentment especially when the utility company still wasn’t on one’s street but homes down the way were ablaze with Christmas lights.

But then these attitudes ebbed into coping and kindness.  My neighbors, who I urged to move in with me, stuck it out in their home six days without a generator.  They came over and used my washing machine or charged cell phones and did more like wash my dishes and fold my laundry. 

Our church sermon this week was about waiting also, the gist being that waiting is not intended to be a static state but a time of preparing.  We wait and reflect during Advent.  Mary waited for the birth of her child knowing there was something before her she could not actually know.  Ramadan, Hanukah, our religious seasons fill us with expectation but also the opportunity to reconsider our paths.  Waiting is about preparing but is also erosive, providing perspective not possible when we first suspect what lies ahead.  Waiting dismantles us of our prejudices, our apathy, our materialism – if we let it.  Waiting asks us to be still and to be moved at the same time.

Waiting for Henry’s heart. What will I do?  Wish another child dies?  Everyone tells me it does not work out that way – a child is going to die anyway.  My absolute need to see my son live does not affect that.  But I am having a hard time figuring out what to pray for.  I know, for Henry to have his chance, another family must endure what is actually beyond one’s ability to imagine.  I guess I pray for events at odds with one another, I pray that I will have grace for whatever arrives.

I pray, sometimes in gratitude, sometimes in hysteria and desperation.  Maybe I pray so loudly that I cannot hear God’s response. With things changing, with us going on the transplant list, I need to remember another family needs prayers.  While they will be strangers, their sorrow will be interwoven with my child’s chance to remain.  Advent is here and we light two candles each night to the Virgin Mary, one for our child and one for the other.  We wait, holding onto the light.

I think God broke me.  It was done with compassion and God remained certain my faith would persevere.   I cannot remember one time that I was angry at God about Henry’s health.  All I can remember are the moments that I was so blessed that both of us, Henry and Erin, were God’s children. 

I know many people who have endured hardship and dismiss God as uncaring and malicious.  All I can say is that my faith expanded and became more resolute each year.  Sure, it may seem unfair that our youngest child was born with a broken heart.  But I knew God had a purpose. My job was to fight for my boy and let that experience fill my own broken heart with faith and compassion.

In the years as Henry underwent surgery after surgery, people would remind me “God never gives you more than you can bear.”  True, but with a caveat.  God  gives you more than you know you can bear at that moment.  There were moments when I felt Henry could die and certainly times when I did not know how I was going to persevere. So I had to wait, I had to rely on others, I had to ask God to wrap me up in grace and get me to the next minute.  I did not know if I could make it, but God did.

Naughty: Feb 2009

One year post transplant and I marvel at who Henry has become.  First off, he has become a pain in the ass.  That’s the dirty little secret doctors fail to mention.  Kids who have endured so many hospitalizations and surgeries can become tyrants.

All right, I know that sounds awful.  But let me tell you, and this comes from listening to many moms like myself, these kids can learn to be manipulative.  Of course, I am delighted Henry is healthy and made such great gains.  But he has also learned that people will give him anything because they believe he is a miracle.  He is miraculous but I worry he is using his gifts for evil.

Henry is repeating kindergarten and still spending half of his day with special education and resource teachers because developmentally he scores at about three years old.  That’s okay, Henry has a lot of catching up to do.  For six years, he lived with 75% of the oxygen his healthier peers had coursing through their young, eager bodies.  Plus he’s missed so much school because of surgeries.  But after Henry’s transplant, it became apparent that he was capable of tremendous growth -- six inches in this first year!  The child is a Wii champion and knows how to order from the Thai take-out menu.  But when it comes time to sit down, listen to the teacher and endure some torturous activity, say, coloring, Henry becomes really naughty.  And the boy knows how to use his story to get his way.

This school year Henry convinced his teachers he should go through the lunch line twice because “I need growing.”  Not long ago, he bit the ear of another child, a la Mike Tyson, because the child had the audacity to ask Henry to get back in line.  When the substitute teacher chastised him, he announced he didn’t have to listen to her because she “wasn’t real.”  Charming. My son, who acts as if he cannot recognize any colors or count to ten, can, nonetheless, reenact entire episodes of Sponge Bob.  I know he can count and name colors because if I sit with him and a giant bowl of M&Ms, he becomes a genius at both of these.

Henry is confident that the world is his for the taking.  And we’re all here to serve him.  For instance, Henry hates Halloween probably because he has to do actual physical labor to receive treats.  So instead he trots down to our elderly neighbor’s house, gives her some con job, and comes back with the entire bowl of holiday candy.  It was World War III when I made him return it.

Other heart mothers will back me up on this because their children have also become excessively “challenging” (here challenging means “one of us must be institutionalized”).  Pattye has stories about Malley that certainly rival Henry’s.  Malley is destined to be a benevolent dictator.  Henry must always hold her hand (down the aisle at church, at Chinese buffet, on the potty…).  On the rare occasion that Henry forgets to do this, Malley will grab the back of his shirt, twist it into a ball and drag him to where she wants.  Pattye denies Malley learned this technique from her.  Or Malley’s father who is a police officer.  I don’t believe her.  And it is rather effective.

Part of the problem is these kids have gone through so much medically.  But we’re also the problem because we’ve engaged in spoiling these kids rotten.  Often it is not the parents who are to blame.  After Henry’s transplant, he was inundated with gifts.  His favorite was a toy sword that was so ideal for the PICU – although he did use it to ward off doctors.  If Henry wanted BBQ while in the hospital, visitors fell over themselves to make it happen.  Did he need his feet rubbed?  Would he like to watch Elmo for the 45th time that day?  Why, certainly!  Even the medical staff gets in on it – child life, doting nurses, respiratory techs who arrive with a puppet show – they’re all in on this trajectory that once you come home with a healthy kid, you haven’t any idea how to manage him.

News flash: chronically sick kids are not beyond doing evil, they can be far from angelic at times. I’ll share a story here.  Before transplant, when Henry moved part-time into  a mainstream preschool program, I told the teachers about his heart condition: his “normal” blue fingers and toes and that there were no daily modifications except that he may tire out more quickly.  Henry knew he was different from other children his age because he was so much smaller.  He took full advantage of that situation.  Apparently when it came time to clean up the playroom or carry his tray back to the lunch room, Henry would tap his chest and croak, “bad heart.”  This would be the same child who was, just moments before, climbing up the slide.  His teachers called alarmed that he had slid into heart failure.  All my child had fallen into was acute manipulation.  I instructed all of Henry’s teachers that my boy was not to use his medical condition to get out of things that every child should have to learn. 

We don’t do these kids any favors by not pushing them to be achievers.  Sure Henry may never win a Heisman trophy but, at the rate he’s been going, we can eliminate the Nobel Peace Prize also.  I have surely spent as much time modifying Henry’s behavior as I have getting him through his heart defect.  He honestly believes he is entitled to do whatever he wants.  I will, sternly, tell him to stop strangling the dog with one of my bras and he will look at me and say, “No, you go away now.”  The upside to all this is that my kid is healthy enough to be really naughty.  The downside is that they don’t let you send six year-olds to military school.

Horrible Days – June 2009

In the year after Henry’s transplant, some days were just horrible.  It seemed like all of his heart friends were struggling medically.  Malley had seizures and migraines, Manning had complications with his anti-rejection meds and other birth defects requiring surgeries.  Tiny Geni had one infection after another and had to travel back to St. Louis Children’s on her fifth birthday.  For a long time, no one could exactly tell Megan, Geni’s mom, why her daughter remained so ill five years after her transplant.  Then it began to look like Geni might be in the initial phases of a certain type of cancer that transplant children can get from being on immunosuppresants so long. That’s right.  Having an organ transplant increases your risk for cancer – several types.  I could not get out of my head the idea that Geni was having her lymph nodes biopsied and may have to start chemo.  It made me livid.

Then I met a new heart mom, Taryn and her beautiful baby, Bryden, who had been born with persistent fetal circulation.  Essentially, when Bryden was born, his circulatory system never switched from depending on his mother to pump his blood to doing it on his own.  During a cardiac surgery to repair this, Bryden had a massive stroke which destroyed large portions of his brain.

Pattye and I worked a fundraiser for Bryden on a blistering hot day.  We were at one of those family farms where kids ride ponies, take hay rides and feed barnyard animals.  We worked the ticket desk collecting money for food and activities, all of which would be turned over to the family to cover medical expenses.  Bryden sat with us.  While Pattye and I sweated, little Bryden was covered in blankets and a ski hat because he has no ability to maintain a core body temperature.  His face was always cool to the touch and every few minutes he’d have seizure activity.  I thought he was just struggling to get comfortable or trying to cry, but Taryn showed me what to look for.  There was not a lot that could be done for Bryden’s seizures, save for the high level anti-convulsants he was taking.  What remained of his brain activity was always under siege from electrical misfires.

I try to remind myself I know more healthy children than these kids who are constantly on the PCIU Tour.  Then I remember that my closest girlfriends are now the ones who have all watched their children die or come too damn close. 

The part that really messes with me is that Henry is doing so well post-transplant.  We haven’t been back to the hospital for anything save routine heart biopsies.  Now Henry gets to go two years without a biopsy –the longest he has ever gone without surgery.  People tell me not to worry about it and to just be grateful.  So I stopped telling anybody, save my heart mom friends, how I am struggling.  I can’t just get over it because I am both scared shitless and unsure why my family has been so blessed.   I am seeking answers that God knows I am not prepared to receive.  I may never know.  But I actually feel guilty that Henry is thriving and his friends continue on with surgeries and iffy health.  I also ask when Henry’s new heart will give out.  The doctors say they expect he will do well for another twelve to fifteen years especially since he did so well this first year.  After that, they stress, retransplantation is always an option.  I can hardly imagine.  I am just getting used to the idea that my kid might survive his own childhood.

There is good news and that’s Malley.  Once her seizures and migraines decreased, her overall health improved.  Malley still has challenges to overcome – her heart will need more repairs and she has some orthopedic issues.  But Malley doesn’t have time to fret about these.  She spends her time arguing with Pattye, perfectly imitating her mother’s lawyer logic.  At eight years old, Malley has decided that Henry is her pet project.  The two of them hug, wrestle and nearly make-out whenever together.  My son, at just seven, is hopelessly in love.

Thank God for Pattye.  I never have to explain to her why I feel scared, sorrowful or just plain pissed.  She knows because she is living it, also.  Some days we wonder if our children will ever make it to adolescence, other days we’re just moms to incredibly defiant kids. 

For now, those things have slowed down for me.  We see the cardiologist a few times each year and Henry’s two anti-rejection meds are certainly no big deal given what we used to manage.  I no longer open hospital bills that comically ask me to send a check for $48,756.

I try to be a good friend to CHD moms who are still “in the trenches” –coping daily with frightening diagnoses and painful treatments done to their kids.  I want them to know they can rely on this community of experienced CHD moms.  But it feels like I am learning more from them than any insight I could offer.  They hold onto their great senses of humor, mocking their unreal circumstances.  Being able to laugh reminds us we can still experience joy in the middle of hellish years.  Truthfully, some of this crap is hilarious.  And unbelievable, often both.

I am an OCD researcher. The day I came across medical journal articles that argued, using uber scientific measures, that CHD parents can exhibit signs of post-traumatic stress disorder (PTSD) was a great relief to me.  It is only now, more than a year after Henry’s transplant that I can even acknowledge that I still have a great deal of healing to do.  Even as I begin writing this blog, I was in denial about how badly I had been broken.

I’ve looked up signs of PTSD and many of them have manifested in my life.  Of course, any self-diagnosis of a mental disorder can lead to utter paranoia.  If I looked up dissociative personalities, I could probably identify with that also.  Spending years fighting for your child’s life is like a surprise gift basket for moms.  Here’s some depression, emotional eating and a nice potpourri of dementia blended with hyper-vigilance.

But back to the signs of PTSD.  With full disclosure, I can say that in Henry’s seven years, I have:

• Had trouble maintaining relationships – my marriage as well as many old friends who I simply did not maintain contact with.  I began to obsess that everyone thought Henry would die and felt sorry for me.  I could not be around that energy.

• Sequestered myself and only wanted to hang out with other CHD moms.

• Not slept through one night since he was born.  

• Not been willing to “re-experience” those years of Henry in the hospital and sliding into heart failure.  For years, I could not look at the photographs or journals I had of Henry’s first hospitalizations.

• Being emotionally vacant when describing to people what Henry was going through.  I was annoyingly cheerful, but hardly honest.  It was as if I was describing my kid’s tonsillectomy.

• Known I was depressed, overwhelmed and grieving but did not seek counseling.  I felt I had no right to take care of myself given all that Henry was going through.

I stopped reading these articles when they started discussing the PTSD the children who actually went through all of the medical procedures can experience.  I want to believe that Henry will never remember any of this but he will.  He will always have scars but only some of them will show on his skin.

Over and over, PTSD is described as a normal human reaction to a completely abnormal situation. It always makes me think of the decisions PICU families are left to make as if these were somehow normal parenting choices: Should we get Henry a heart transplant or let him die? Should we travel overseas with our newborn to explore stem cell treatments?  Should we sign a DNR? PICU families cope the best way they can, sometimes minute to minute, in one of the most frightening places a parent can find themselves.  It would be beyond presumptuous for me to say that this is akin to serving in a war, something I know nothing about.  I can say, with confidence, that these families’ stress is often magnified by the fact that hospitalizations, open heart surgeries and fear are not a singular event.  We live through years of not knowing whether our children will survive.  Or time spent knowing we will, eventually, bury our babies.

For that reason, it is critical that CHD mothers support one another.  There is healing that can be had on both sides with this fellowship.  I know plenty of mothers walk out of a children’s hospital and will be damned if they’re going to ever step foot in there again.  In a way, I’m envious.  I’d like to say that, with my healthy kid, I can put that all behind me.  But I can’t.  Every day, I know Henry’s new heart may begin to fail, unable to keep up with a growing body that knows this organ is foreign matter.  I stick with my CHD posse and work with new heart moms because it helps with my coping.  Selfish, I know.  But I need my own validation. I crave to hear what other CHD mothers are going through so I can accept what I went through: it was traumatic, it was graphic, it seemed endless, and I lost a lot in the process.

I feel like I have “survivor’s guilt.”  My son has done remarkably, well beyond the expectations of his medical team.  I know we got a lucky break.  For reasons beyond my understanding, Henry quickly got a new heart, sailed through his transplant recovery and has shown no signs of organ rejection.  Others, kids whom I now love, were not as fortunate.  Why?  Every day I ask “why?” I don’t know if I can ever stop wondering but I am afraid that if that day does arrive it will be because Henry is in medical trouble again.

I am grateful beyond words that Henry is now healthy.  I also know, that as a heart recipient, my son will always be living on borrowed time.  Literally, time he borrowed when a new heart was gifted to him. 

One of the insights I’ve learned from being with other CHD moms, is that I am much stronger than I think.  I look at Megan, taking Geni back to the hospital again and again, and am beyond impressed at how calm she is.  Then I remember  I was also that mom, maybe I still am.  CHD moms’ ability to process devastating medical news grows with time.  I was wrecked and useless when Henry was first in the hospital.  By the time we got to transplant, I was scared but I did not find my fear dominating me – neither spiritually nor rationally.  I could hear a doctor say “Henry has a 75% survival chance in transplant surgery” and be okay with those numbers.  Before, when we were just starting Henry’s heart surgeries, I would hear “75%” and do crazy mom math.  This is when you fixate on that one in four chance that your child is going to die.  I can remember looking at people in the surgical waiting room and counting them off by fours, “Survives, survives, survives, dies.”  It was maniacal Duck Duck Goose.

I am tired, deep into my bones, of hearing more bad news about another heart kid.  Every day, things feel unfair. And I can’t remember who I was or what I cared about before Henry.  I was an absent-minded mommy.  I was wrapped up entirely too much in building a professional identity.  I thought God was just watching me live my life, moderately pleased with how I had turned out. 

Thanks for the landmine, God.

Dating

Getting divorced.

Having a child with heart failure.  Now he needs a heart transplant.

This seemed like a really good time to start dating. 

Truth be told, I wasn’t looking for a man as much as I was looking for a venue to go out and have a little adult fun.  That didn’t involve nightclubs or skeezy pick-up lines.  Adult entertainment that understood I needed to be in bed by 10 p.m., just me and an episode of Forensic Files.  Seeing how I was last single in 1993, I knew I would be no good at dating.  I wasn’t lonely, I think I just wanted to meet new people who didn’t know my past and present.  A posse of wild women would have suited me fine.  Instead, I met Jack.

I became so smitten with the boy (this 40 year-old “boy” with two kids of his own) that I compulsively broke up with him.  I knew it was entirely unfair to have a serious relationship given all I was going through.  While my marriage had been over for more than a year, Ned’s and my life still meshed at many points – especially in terms of Henry’s care.  My social life was chockfull of illicit experiences: mixing meds for Henry, Wal-Mart, watching Shrek while sipping wine.  Hot action, I know.  Jack had to be downright nuts to want me.  But he kept coming back for more dates. They evolved from quiet dinners and long walks, just the two of us, and became outings with all five kids – to state parks, for pizza, to the medieval fair.  I smelled like wet wipes and batted my lashes over the circles permanently residing under my eyes.  He’d attempt to slide over coyly across the bucket seats of his minivan, offering a red licorice stick like a valentine.  We were geeky, middle-aged single parents falling hard for one another.

One night I really put forth my best effort to end things with him.  We were dining at a steak house and I had prepared a long speech with several irrefutable points about why we should stop seeing each other.  I had introductory comments, an overview, counterpoints to what I assumed would be his counterpoints and a dramatic flourish for a conclusion.  I spoke for ten minutes about how I was emotionally distracted, newly single after a decade of marriage and simply had no time between three kids, Henry’s care and my career.  Then I rested my case.  Jack had no counterpoints.  Actually, he said nothing for a long time and then looked at me and said, “Would it be weird if I ordered cheese on my steak?”

Well, I thought, yes.  It would be weird to add cheese to your steak and, by the way, did you hear one damn word I said?  He knew what I was thinking, took a deep breath and said, “I heard every word and I don’t care.  I am going to stick by you and Henry, however long it takes.  But I want us to be together.”  At which point, utterly defeated and overjoyed, I told him to go with a colby-jack mix.

Jack gave me permission to put my happiness toward the front of my calamitous life.  It is no joke to say that he taught me how to waste time.  It wasn’t Ned’s fault that I couldn’t relax, that was totally mea culpa.  Monday through Sunday I worked – my job, research, volunteer projects or trying to manage the mayhem at home.  I rarely gave myself permission to just chill and over the years the things I loved doing – reading, photography, taking the kids on adventures – began to feel frivolous, wasteful of what I assumed was my precious time. I had become a maniacal multi-tasker.  I learned to pay the water bill, make lasagna, construct an authentic Mayan temple for Gwyn’s school project made entirely of giant marshmallows and write chunks of my dissertation.  At the same time.  I thought I was being efficient. Instead I think everyone just found me a commandeering pain in the ass.  And the work was never done.  I always felt I had more to do and always found myself agreeing to take on more.  I desperately wanted people to find me competent but some days I was so crazed people demurred from making eye contact with me.

Jack lacks, entirely, the ability to be a stress monger.   Five children screaming tunes from “Alvin the Chipmunks?”  Just watch, he can sing louder.  Girlfriend is trying to wash clothes, answer the phone and file her taxes?  He’ll wrap his bear of a body around me and whisper in my ear, “The reason we have kids is for cheap labor.  I’ll get them to do some of this.” (For the record, it is incredibly poor judgment to let your eight year-old fill out your 1099 form.)

Jack brought to my attention things I did not know about myself, namely that I am a dork.  This is just fine with Jack seeing how he is the mayor of Dorkville.  And so we do incredibly dorky things together like being Battlestar Galactica addicts.  We analyze each episode, deconstruct each character’s story arc.  I suggested we make a database to better ascertain which characters were truly human and those that were not but Jack drew the line there.  

Our lives together are becoming blessedly mundane.  I’ll be reading some dry book on the Shia uprisings in southern Iraq (or People, equally riveting) while he is on his laptop constantly interrupting me with things like, “Holy cow, check out this video of a guy wrestling mongooses in a goulash pit.” We did have a handful of grown-up dates but then faced facts that we were just too old to put up that farce.  Late nights are out for me because I am on the geriatric sleep schedule and Jack doesn’t drink, smoke, gamble, shoot pool, dance or hold up liquor stores.  I mercifully gave up trying to win him over with my appearances, ditching high heels and make-up when he pointed out I looked best in my running shorts and his t-shirts.  And that, by the way, his mother was a stylist and maybe she could do something about my incredibly pathetic hair.

I also do a lot of complaining. And having one drama or tragedy after another.  Face it, he is dating a woman who either has a really sick child or is worrying about friends who are in the same situation. He finally points out to me that this is hard for him, also.  That he is trying to fit into my life when there is very little wiggle room.  That when he is at my place, he is trying to not step on toes and relieve some of my stress.  That there is no handbook for dating in these circumstances although we come up with several humorous titles.  Field Guide to Identifying Batty Single Mothers.  How to be Seductive while Treating Staph. Heart Failure: How to Remind a Mom She Still Has One. 

One Sunday we made the big commitment and had a house key cut for him.  I justified a thousand reasons why this was a smart move as long as it didn’t mean he was moving in with me – Jack and his two sensational children, Kelby and Gabby.  I told myself he could get into the house if I had an emergency with Henry and had to leave.  If a tornado blew through, a wildfire, a tsunami in our landlocked state.  It did not mean, unequivocally, that his family was moving in with mine.  

Having the key made was a much bigger deal for me than it was for him.   I was expecting momentous, Jack was expecting a key.  After it was cut, he slipped the original back into my pocket and then headed down the aisle of Wal-Mart to find Gabby, buy a new crock pot and ingredients for chicken salad.  I remembered that such tasks had once been my life also and realized that it could be so again, if I let them.

                        Erin & Jack – the tech WIZARD for HenrytheBlog.com

Used  -- June 2009

Recently, someone asked Henry how his new heart was doing.  He lifted his shirt, pointed to his scar and said, “My mom got me a used one.”

Besides the undeniable comic genius of my son, the comment made me think.  Don’t some of the best things come to us used?

Like love.  While the feeling may be new to us when we fall in love or hold our new baby, love is as old as the existence of God.  It mutates, transfers and nestles but love is always available – as long as we are. 

The love I have for each of my children is uniquely different from one another.  When Gwyn arrived, I was in complete disbelief that I had bore a daughter.  We did not know she was a girl until she arrived, all ten pounds of her with wavy strawberry blonde hair. I essentially gave birth to a child that bore zero resemblance to me with her fair skin and green eyes.  I don’t know that I was intensely protective of her but instead felt this indescribable, more sisterly bond.  I was proud of myself for bringing another girl into a family of such amazing women. 

As a baby, Gwyn really didn’t need a mother. This bummed me out.  She was content with whoever happened to be hanging around.  All the new mother worries about colic or crib death really never manifested in me because my daughter was seemingly capable of taking care of herself.  Gwyn rarely cried, slept and ate like a champ and people always stopped to ask where I had adopted that pretty little blonde girl.

I dropped my newborn daughter.  Awesome mothering skills, I know.  I was bending over with her in one arm to pick something off of the floor.  Technically, she only fell maybe a foot and onto carpeting.  I looked down at her in complete alarm that I had fractured her skull or severed her spinal cord.  She looked back without any sign of fear.  If she could have spoken, she would have said, “Don’t worry Mom, first borns are always the trail run kids.”

Ian’s arrival was different both because of the complications and the boy craved me and only me.  If I held Ian just an arm’s distance away, squalling would commence.  He learned to tolerate Ned and Grandma Martha his first year of life.  But most of the time he clung to me like a baby chimp.  I found this intoxicating.  The love I felt for Ian felt was absolutely maternal – he needed me and I was the only one who could make him happy. 

With Henry, I learned that love can take you to the worst places possible.  

But all moms get used up.  I once calculated that, between three babies, I’ve changed about 10,000 diapers. My children should have a landfill named after them.  The work moms do never ends – there’s always another spill, soccer game, more tears to wipe away.  Mom’s energy is the family’s ATM.  Sure, mom can sign my permission slip while she is working the wok.  Mom won’t care if I can’t tie my shoes until I’m middle-aged. 

I have finely honed my lying skills as a mother but that always bites me in the butt.  Once when Gwyn was very little, I took her to a birthday party for a classmate.  There, after speaking to our hostess, she ran back and in front of a crowd of other mothers  announced in astonishment that, “Allison’s mom made the birthday cupcakes.  In her own kitchen!”  Until then, I had Gwyn believing that cupcakes could only be made by licensed professionals at Wal-mart. 

I found my sanity running thin with Ian.  Remember when airports started limiting how much fluid you could bring on board in your carry-on luggage?  As a soon-to-be first grader, Ian must have heard this on the news and decided to test this.  Unbeknownst to me, Ian found an antique eye dropper bottle in my collection of “why-in-the-hell-am-I-keeping-this?” stashed in a medicine cabinet.  Of course, the bottle had no label.  Then he filled it with hair gel and mouthwash which, by the way, he did while his sister watched knowing very well this would lead to no good.

On the first day of the first grade, my son marched into class and during introductions whipped the bottle from his new backpack and announced he had poison.  Of course, his butt landed in the office and I had to talk the principal out of calling Homeland Security.  Let’s just say the punishment he received from Mom bordered on terrorism.

No one can ever prepare you for motherhood.  Not for daughters that sell you out, not for boys that come up with trouble you could never imagine.  And certainly no mom is prepared for the fact that her child may die.  I can’t count the days I thought Henry was not going to make it.  I guess it’s been with me since he was born.  What sort of mother does that make me, when ever day I wonder how much longer he has?

Today was transplant clinic.  Henry has gained another four pounds (44 lbs!) and grown seven inches since his transplant sixteen months ago.  He is doing better than every heart transplant kid I know.  Not one rejection issue.  Never had an infection or serious illness.  He’s just trucking along.

So I have to wrap my mind around the fact that Henry is doing magnificently, impressing the hell out of the doctors.  Still, I know he won’t always do this well.  The doctors will eventually start him on statins to keep his cholesterol down and his blood vessels from hardening.  I can expect that his new heart will eventually lose the battle with a body constantly trying to get rid of it.  So far, the anti-rejection drugs are keeping that at bay.

I talk to Dr. Ward today about how long I can expect things to go well.  “Are you asking me to predict the future?” he replies.  Yes, yes I am.  That is why I have been in this clinic now for three hours.  I would like you to whip out your medical 8-Ball and tell me what our future is.

“Fifteen years is our best guess.”  Fine.  Then I start playing desperate mom math with him. 

“That’s fifteen years for all heart transplanted kids including those who have had serious rejection issues their first year.  Henry did not have any of this, so he might go longer, yes?”

That would mean Henry could survive, without another new heart, until his twenties.  He could go to college, fall in love, break free from his batty mom.

Dr. Ward concedes his heart may last longer.  I tell myself we’ve got a decade of memories to make, used love to spread around.  Then we’ll go on the transplant list again.  I try to simplify this in my brain, just like I need to buy a new (used) car next year. 

I do some more math.  Heart retransplantations tend not to go as well.  On the other hand, Henry will be larger in size then, making it more likely we can find an appropriate match.

By then, if we make it fifteen years, I won’t be able to make this decision for him.  I know he may not want to do this again.  I will, of course, plead, cajole and threaten.  Promises of M&Ms and watching “Finding Nemo” won’t work this time.

Henry has already used up one heart.  Now we’re on our second one.  How much more can I ask of him?  Before transplant, I lived every day thinking his death may be imminent.  And he didn’t die.  Now I know his new heart is, with each beat, ticking out of time.  But we still have some.  A decade or more.  It’s not enough.

Living too Close to Dying:  August 2009

Sometimes I trace my finger along Henry’s chest scar.  He finds this ticklish but I am trying to measure how far this has taken us.  His scar has become my touchstone. I judge myself as Henry’s mother by this wound left behind. 

Finally, I can see I did more good than damage to my son.  He was born broken of my body. That I have learned to live with.  I can also allow myself to be pissed off.  All this time, I’ve never permitted myself to throw the mother of all hissy fits.

Here it comes.

I am so INFURIATED that my son went through this.  He had his chest sawed open six, eight, hell I can’t remember how many damn times.  He was violated.  My family was violated. We lost our sense of security for years.  Every freakin’ day I wonder when my boy will die.  To date, that would be almost 3,000 days.

I become internally irate when people tell me to be thankful Henry is doing well.  Of course, I’m thankful.  I sure as hell have first-hand experience in miracles.  But that, in no way, doesn’t mean I also feel incredibly angry.  We lost so much.  I abdicated being a mother to my other two as well as being a wife to fight for Henry.  Don’t remind me to be grateful.  Unless you have been where I have, you have no idea how grateful I feel nor how much I abhor what we went through.  I can do both. 

People will ask how long Henry will survive with his new heart and the doctor’s best guess is 15 years.  People respond to this again with, “Be grateful.”  Really?  I should be grateful?  How would you feel if you were told your child might only have fifteen years?  I am grateful my son is with me.  I am devastated he may die young. 

I am pissed to find out how common congenital heart defects are and yet there is not nearly enough research on how we can repair these.  One in every hundred children is born with a broken heart.   I visit ItsMyHeart.org and read that, “Nearly twice as many children die of congenital heart defects as from all forms of childhood cancer combined.”  Where is our St. Jude’s Hospital?  I read on: “Yet funding for pediatric cancer research is 5 times higher than funding for CHD.”  Okay, pediatric cancer sucks. It is a kind of horrible I am blessed to not know.  I am not suggesting we take resources from families who are also struggling.   But why aren’t congenital heart defects a national health crisis?  Think about the financial impact of families, the millions hospitals spend to save your child, the days of school missed, the amount we have to fork over to drug companies to keep our kid’s ticker ticking.  Or, to put it another way, it has cost my insurance and my bank account more than $1 million to keep Henry alive.

Congenital heart defects are considered the most common birth defect.   I see movements to eradicate autism, leukemia and muscular dystrophy but I do not see the same nation-wide effort to take on CHDs.  Is the attitude that there is nothing we can do prevent them?  Just seven percent of the National Institutes of Health’s (the US government’s medical research agency) goes to cardiac research and this includes adult heart disease.  And yet, what is the number one killer of Americans?  That’s right, heart disease.  Add to that the average 100 children born each day in this country who have a congenital heart defect.  Is this the best we can do?  And think about the rest of the world.  In many countries a child born with a heart defect receives no medical intervention because they have no access to screening devices (ultrasounds, EKGs, heart caths, etc) let alone cardiac services such as surgeries and heart meds.  If Henry had been born in Malawi, Haiti or Yemen, the sad truth is that he would probably be dead.

I know there are national CHD organizations – Mended Little Hearts, It’s My Heart and so forth.  I’m sure they bust their ass to get the word out about CHD but I want federal dollars, big research bucks and a national platform where parents, doctors and researchers can discuss how we can and will improve these children’s lives.

I am pissed that CHD families are treated differently because doctors and nurses make rash judgments of their intellectual capacities.  Do I think I was treated better because I had a college education and a middle class wardrobe?  Absolutely.  Did I witness doctors and nurses fed up with teen age mothers, destitute families and non-English speakers?  Too many times to count.  I understand that any family member can be a challenge to work with in the high-stress world of CHDs.  But I know my boy received superior health care because I had the resources – time, money, education, supportive family, transportation, child care, insurance – to chase these down.

It shouldn’t be this way.  Every CHD mom should have a mentor – another CHD mom and a medical professional who can teach her what in the hell is going on and about to happen.  What happens to the mother who only speaks Spanish whose daughter is being wheeled off for an open heart surgery and the hospital can’t find the medical interpreter?  Here’s what happens.  She’s left in the waiting room not having a bat’s ass idea what is being done to her child.

This is not to place the blame entirely on hospitals.  Most make considerable effort to hire medical interpreters.  But, in Oklahoma, that 40 per week job pays less than $30,000 annually.  Hardly a financially savvy career choice.

Why is it that my local hospital has not once given me any literature about HLHS?  Did they assume I was illiterate or that I could just find that information out on my own?  It took me years to figure out – on my own – what went so horribly wrong with Henry’s heart.  What was a 19 year-old single, poor mother supposed to do?  Figure out how to look it up on the internet? 

I am annoyed beyond belief that I see hospital campaigns about MRSA prevention (a particularly nasty staph infection) and yet many of Henry’s doctors would stroll into his hospital room and not wash their hands or use the antibiotic gel.  Hello!  Don’t ride my ass about wanting to hold my child when you can’t be bothered to alcohol swap your stethoscope before placing it on his chest.  Henry had a rampant staph infection for three damn weeks after he was born.  The burn unit had to be called in to scrub out his chest wound.  He had infection precaution signs on his PICU door.  And then in comes the attending who fidgets with the bandages not having washed his hands from the last patient.  Now, having touched my infected kid, he’s off to yours!  Be a bitch – tell the medical “expert” that handwashing is the protocol in your kid’s room.  Doctors should practice what they preach.

I am pissed that newborns can have heart attacks and strokes.  I am pissed that some mothers who fought just as hard for their children nonetheless lost their beloved babies.  I am certain I will lose it when another mother describes her son’s ear tubes operation just as traumatic as Henry’s “repeat offender” heart surgeries.

I am pissed I’ve become so cynical. I don’t like that I’ve lost compassion.  But some days I just don’t have it.  I can’t invest emotional space in your child’s runny nose because my other friend has a daughter with a flipped around, artery twisted, failing heart.

And I am angry, endlessly discouraged, that there isn’t “safe space” for CHD mothers to speak about this.  There are plenty of venues where we can talk about the diagnosis and share our child’s story.  There are hundreds of websites that sweetly tell the story of how Anthony overcame his Tetralogy of Fallot or memorialize baby Grace who could not survive her particular heart defect.  What we lack, what we crave, is the community for moms to admit CHDs are killing us, also.

So, here is my last rant.  If this has happened to you, reach out.  Find your CHD mentor, be a CHD mentor.  You don’t have to dispense medical advice, just share your story as honestly as you can.  And listen to the other mother.  She needs you.  We need you.  We’ve all been living too close to dying.

Here are a few internet discussion lists for parents of CHD kids you may want to consider joining:

Hope for Children with HLHS @ Yahoo Groups or http://www.hopeforhlhs.com

Mended Little Hearts @ Yahoo Groups

Congenital Heart Defect Support @ Yahoo Groups

Its My Heart @ Yahoo Groups or http://www.itsmyheart.org

And if you know a great discussion list or resource for CHD families, please email me at: HenrytheBlog@gmail.com

Seizure, August 2009

I have cursed my kid.  I have spent the last year feeling guilty that Henry was doing so well while other heart kids were struggling.

Then Henry had a seizure.  He had spent the afternoon with Malley swimming and binge eating hot dogs.  We came home and he immediately fell asleep.  After an hour, I tried to wake him up so he wouldn’t be up all night.  Here’s where my mothering really sucks.  I told him to get up three times, then started tugging on him because he refused to wake up.  That’s when Jack noticed something was wrong.

Henry’s arm was bent across his chest, rigid, and when he finally opened his eyes, he seemed bombed out of his mind.  He couldn’t hold up his head and stared off into the distance.  I pulled him up and tried to get his attention, then started interrogating him.  “Where did you go today?”  “Who lives in a pineapple under the sea?”  He just mumbled, incoherently.  Jack pointed out that his hands and feet were blue.

That’s when I knew he was having a seizure.  I handed him off to Jack and started getting ready to go to the ER.  But then Henry just “woke up” and while he acted very lethargic, he at least could speak and sit up on his own.  The whole incident could not have been more than five minutes.  I knew we were in the clear when he immediately asked for mac n’ cheese.

I will, at this juncture in mothering Henry, do anything I can to avoid the emergency room.  One, I don’t want my immunosuppressed kid around a bunch of infected kids.  Secondly, I know from experience that taking a heart kid into the ER means all staff will freak out.  I bet I could take Henry into the ER with a splinter in his finger and they would have him attached to an EKG, drawn blood and prepped for intubation before they even looked at the damn finger.

Once Henry had his wits about him, I decided to call the cardiologist on call and see if a trip to the ER was necessary.  I know this may seem like a blasé attitude on my part.  Other mothers might see a seizure and haul ass to the ER.  But I’ve seen a lot of seizures in my life because of family history and I felt confident Henry was doing fine now.  He was sleepy but ready for dinner.  And, as always, ready to be catered to his every whim.

Dr. Overholt was the cardiologist on call and I like him very much because he is good with maternal panic.  He agreed Henry didn’t need to go to the ER but that a neuro consult needed to be scheduled.  That’s because Henry had a massive seizure before his transplant as well as what we think was a mild seizure in school several months after transplant.  In all of these, Henry was asleep and being woken up is when the seizure happened.

So began the rigmarole that is a neuro evaluation.  We did the initial office testing (touch your nose, press against my hands, close your eyes and tilt your head, etc.). The nurse practitioner noticed that when Henry smiles, one side of his face turns up more than the other.  I swear, I had never noticed this.  What kind of mom am I?

I still had an hour to kill before the EEG so I let Henry run back and forth across the hospital skywalk.  I naively thought this would wear his butt out.  But at 8 am my kid is still wired and has to be put in full body restraints for the EEG.  The technician did everything she could to create a sleep-time environment -- lowered the shades, put on soothing music.  Henry just bellowed “LET ME OUT!, I NEED TO BE FREE!”  I only say this because I asked, the EEG staff will not give your child (or you for that matter) Valium.   In the end Henry finally fell asleep – at 9 PM THAT NIGHT. 

We followed the EEG by scheduling an MRI.   I know what they are looking for – evidence of an old brain bleed or atrophy.  Maybe my kid had a stroke and we never noticed it.  Or went so long without oxygen that part of his brain has been damaged.

So I cry about that a lot lately.  Because we spent all these years’ of attention on getting a functioning heart, we did not consider the implications of his CHD or the surgeries had on his brain.  How would I know my kid had a stroke in surgery when he comes out of the OR in a drug-induced coma?  Once he is awake, how would I know if he was acting normally?  “Normal” for Henry has always meant he was behind in speech and age-appropriate learning goals.  Certainly, he could have had one, five, a dozen small brain bleeds and everyone involved could have missed it.

What matters is that I missed it.  That maybe my boy has permanent brain damage and I was so damn obsessed with his heart that I didn’t notice.  I have told myself, since we first enrolled Henry in nursery school, that all he needed to do was catch up.  We have a team of special education teachers and therapists that are in their fourth year of trying to get Henry to catch up.  Yes, he is making progress.  He is seven years old and in first grade but spends the majority of the day in special education.  I keep thinking it’s time he know his address, be able to count to twenty.  But he can’t.  And I know brain damage can be accommodated but eventually the resources to learn will run out.  I kept thinking he would catch up. 

 In the end, we didn’t have the MRI.  I am not sure I wanted to know if they could see brain damage or not.  But, regardless, Jack and I took Henry back to Children’s for the MRI.  I asked Jack to go because that’s what being in love is all about.  Go with me as we sedate my child (thank you, God), give him an IV and then stick him in this giant tube that makes a racket.  Hold my hand and console me.  And don’t give me that look like, “What is the hell was I thinking signing on for this family?” 

The MRI was cancelled because Henry’s pacemaker leads are still in there from long before his heart transplant.   The radiologist didn’t want to do the MRI because the pacemaker wires presented a risk to Henry – shock, magnetic force field, kryptonite…I can’t remember.   Again I am pissed I am so mindless about these things.  I knew the damn wires were still in there.  But only now am I asking, “Why???”  If the child has a new heart then why do we need pacemaker leads?  As bonus material to freak out about, the radiologist mentions that Henry’s leads are coiled underneath his new heart.  WHY?  This means that, during transplant, they took out his heart, and then put in the new one on top of a nest of pacemaker leads.  I thought this was a perfectly good heart.  Why did he still need the pacemaker leads which now cannot be reasonably extracted?

So we have no MRI to look at.  Maybe that is a mixed blessing.  The EEG will undoubtedly show that my kid is a hyperactive insomniac.  Like I needed a brain wave scan for that.  Next up we have a three hour neuro/psych evaluation.  Lord, only knows what they will say about my kid then.  First, the doctor has to wander her way through a family history of questionable mental health.  Then she gets to interview my kid who answers questions such as, “What is your sister’s name?” with “Why you no got Sponge-Bob t.v.?”

Why is Henry having seizures?  My money is on us never knowing, conclusively, why.  I had mild, adult onset epilepsy that disappeared in my mid twenties.  My sister had adult onset epilepsy as well and a seizure took her life.  But neither of us had seizures as young children.  Maybe Henry had a small stroke (or strokes) and we never picked up on it.  It seems possible given that he’s had at least one heart attack in the OR.  The neuro nurse practitioner thought it was likely Henry had some brain damage and this is, obviously, not repairable. But why did this happen?  Was it a surgical injury or just from living so long with depleted oxygen?  Add to the bag o’worries that one of the anti-rejection meds Henry takes can cause seizures, although this is not a common side effect.

Crap, I knew this moment was coming.  When our good fortune with Henry would not remain.  I don’t mean to portray him as if he were in dire straits, because he’s not.  He is so healthy and growing like a weed.   But I really don’t want my kid to take anti-convulsants and anti-rejection meds.  That’s too much toxicity.  And it’s just not fair.  Bad heart, bad brain.  A hypoplastic epileptic. 

I need to, as his mom, imagine the worst case scenario.  I do this despite many telling me not to worry about things I don’t know are true yet.  But I have to prepare myself.  I have to gauge how much more strength I need to scrounge up.  Pattye and I have discussed this a lot – the PICU mom phenomena of diving head and heart first into the worst situation we can imagine.  We do this to cope.  We need to know just how awful things can get because we learned long ago to brace for the impact of bad news.  I don’t want to live with any more “what ifs?”  I want plans of actions.  What I’m going to do if Henry is always in special education. What I’m going to do if his new heart expires.  What am I going to do?

Postscript, September 2009:  EEG results came back abnormal – “bad” brain waves in his occipital lobe (the lobe that holds the central cortex in the back of the brain and processes visual information).  Henry winds up with a diagnosis, for now, of idiopathic childhood epilepsy – or epilepsy of unknown origin.  They will do a CAT scan but are doubtful this will show anything – leaving us with the idiopathic diagnosis.  We’re not going to start anti-convulsants because his seizures are so infrequent.  Plus, neuro, cardiology and the transplant team need to consult on this. 

How do I feel?  I feel pissed and tired.

 Family – September 2009

Jack and I are shacking up.  We intend to get married but things keep getting in the way.  Like my mom being transferred to Zimbabwe or that wedding planning gives me hives. (Yes, I understand I can elope.  But my mom threatened to ground me.)

So we are living in flagrant sin with our five kids, two cats and a dog.   We could not have been less prepared to become a blended family.  Jack’s two kids, Gabby (10) and Kelby (12) are with us full-time and their mom lives out of state.  That means we have two kids in the fourth grade, two in the seventh and then Henry who is in first.  Ned took a new job where he is out of state for months on end.  This was hard on my three but Jack has known how to step in without stepping on Ned’s toes.

I knew nothing about stepfamilies except some old movie where the stepdad turns out to be a wife beater and the son has to hack him to death.  I was hoping for better.  And, in the end, it has turned out much easier than I thought.  For a lot of reasons, none of which have to do with me.

First off, there’s Jack who is always willing to compromise rather than argue.  While my family’s motto is “Perpetual Resentment with a Stiff Drink,” Jack comes from different stock.  He is a genuinely happy person despite my multiple attempts to point out that, clearly, this is a sign mental instability.  While I have “moods” (also known as bitchiness), Jack is even-keeled. And the simple things make him happy – watching the Cardinals, fixing things around the house, eating a good meal.  What he wants the most is to marry me and raise our family.  I can’t believe my luck.

His son, Kelby, is great with Henry. Kelby gets him ready for school each morning.  He wants to teach Henry how to swing a bat and navigate through Deathcon Level Four on the Playstation.  Kelby and Ian are vastly different boys.  Kelby is athletic and often a smart ass who will grow to be some sought-after jock one day.  Ian is a people pleaser whose ability to coordinate his body into athletic grace has yet to materialize.  He is the sweetest of boys with the manners of an English butler. The two of them get along if, for no other reason, than to have a unified front against the girls.

Then there is Gabby.  Let me just tell you, I landed Cinderella.  The child lives to clean and organize.  Nothing makes her happier than Windex, paper towels and the challenge of my filthy kitchen before her.  I have gotten up on a weekend morning to find she has scrubbed all of the baseboards, dusted the ceiling fans and made a smorgasbord of French toast.  Sometimes we have to stage “Gabby Interventions.”  No, you cannot operate a circular saw to build us a deck.  No, you cannot hose down the boy’s bathroom in ammonia and bleach.  Yes, I understand that vacuuming is not a biannual event.  I have tried to tell her that she doesn’t need to clean my pit of a house to keep her in my good graces.  I’m going to love her no matter what.  She looks at me confused as if I don’t quite comprehend that she is in charge of the homefront since I clearly abdicated all responsibility.

I think the blending of families was tougher on Gwyn.  She hadn’t completely warmed up yet to the idea of having Ian and Henry around, let alone adding two more.   But, in an odd way, the expanded family took some of the focus off of her.  She felt it was okay to relinquish the big sister role some and take on more of her own interests.  The truth is that, because things let up with Henry after transplant, Gwyn felt she didn’t always have to keep an eye on me.  My daughter has spent much too much of her young life trying to be strong for her mom.  Now she’s so damn independent that I have to corral her back in.  She’s the only girl drummer (amongst nine boys) in the middle school band, on student council, in drama and all honors classes.  She can spend hours locked in her room designing video games or reading until we have to use SWAT team tactics to bring her to the dinner table.  But when she does arrive, she can be so affectionate.  She’s been hugging me a lot lately and each one is a valentine.  It kills me that she is hurtling towards college and leaving me.  Recently, I got a call from a university in San Francisco.  They wanted to speak to me about the cost of residence halls.  Why?  That would be because my seventh grade daughter had contacted them about enrolling and financial aid.

And Henry.  He Who Knows How To Manipulate ALL Around Him.  Since there are six of us to serve him, he has no problem scoring what he needs.  This sometimes means that he gets four bowls of cereal in the morning.  It also means there is a houseful of brothers and sisters who love him.  He has a great dad and he has Jack.  How lucky are moms like me who have great men helping us raise sons?  Recently, Henry and I were arguing whether or not he could take his scooter down the street.  By himself.  At 6:40 a.m.  When I gave him the final “No way in hell, kid!” he said, “I’m going to go tell MY Jack what you did!” 

 I always wanted a houseful of kids. People in my family aren’t big breeders.  We raise 1-2 children, very sensibly, to be excessively neat, civically-minded adults fond of golf and highballs.  I turned out to be the whack-a-doodle one in my clan. Not quite the black sheep but certainly dangerously liberal, disorganized and mouthy.  I got my houseful of kids and the kind of man that my girlfriends always want to know, “Does he have any brothers?”  (No, he doesn’t.  If he did, I certainly would be their agent, taking my commission.) 

I never believed I deserved to have it this good.  I also had dumbass notions of what love and a committed relationship were about.  This is no dig at Ned.  I didn’t know how to tend to a marriage my first time around.  I intend to do a better job this time.

This time I know what matters.  I also know what turns me on.  Like when Jack fixes the boy’s tub.  He had to cut through dry wall, buy very exotic plumbing pieces and even use a blow torch.  Literally, I could not keep my hands off of him while his entire body was crammed between the house’s cement pad and our decrepit tub.

I love that he looks forward to cooking dinner with me. And he has adorable quirks.  Like the man loves, I mean loooooves, trips to Sam’s or Lowe’s.  Or that he brings me flowers every month, picking out color combinations that indicate possible color blindness.  I would like to say he is mine alone but I do have to share with him with our two cats, Tuna and Georgie.  For the record, I literally saved them from kitty euthanasia at the pound.  No matter, because these two feline tramps adore MY man.  They snuggle in bed, purr into his neck and then swat at my ass if I dare pass by. 

Sometimes I don’t think I can fall in love with Jack any more than I already have.  There is so much in my past, especially Henry’s struggles, of which he has not been a part of.  I live each day with some sorrow, fear and resentment and he gets the burden of witnessing it. Then he asks me if it would be okay if he went to some of Henry’s upcoming appointments.  I’m taken aback, equally as much as I want to rush into his arms. The sweetest part is that he is not just doing it for me. He’s doing it for Henry, having fallen hard for him, also.

Erin & Jack
are delighted to accounce
their marriage on May 9, 2010
which also happens to be the weekend
of Henry's birthday and Mother's Day!

Defective Family – October 2009

I’ve got to stop doing two things.  First, no more going to the doctor.  Those people are chockfull of crappy news.  Secondly, I’ve got to stop hanging around my family because they’re germy. 

Ian is on, I think, week 47 of a sinus infection (having had the flu in the midst).  We have done everything to treat this kid – antibiotics, decongestants, allergy meds, nasal sprays – even that little kettle you fill with hot, salty water and pour up their nose (Ian calls this the “snot pot”).  Ian is exceptionally talented at many things but I believe his greatest gift is puking.  So every time his sinuses flare up, he gets woozy and then its relentless upchucking.  It frightens me because I can’t keep fluids or meds in him.  For those who feel compelled to offer me medical advice, I counter with “Why don’t you come take a crack at him?”

Right now, we’re using topical Phenegran to control the nausea.  But I’m at my wit’s end because we can’t seem to ever rid him of the sinus infection.  In the middle of all this, Jack came down with pneumonia.  I’d like to claim I was Florence Nightingale to my beloved but that would be some fragrant bullshit.  Basically, I let him lie in our bed for two weeks, hacking and aching, while I dealt with Captain Upchuck and his little brother’s endless cycle of doctor visits.

Henry has actually been quite healthy.  No colds or flu.  Ned stoically stood in line outside for four hours one frigid morning with his hyperactive heir for an H1N1 shot.  But I am still trying to get all of Henry’s neuro evaluations done.  We had the cat scan completed but don’t have any results.  I also met with all of Henry’s teachers and was discouraged to hear them say that they noticed many things that pointed to a similar delayed cognitive function/visual processing evaluation we got from neurology team recently.  Henry, at seven, is just not ready to write his name or understand simple math concepts.  I can live with him being developmentally delayed if someone can just promise me that he’ll eventually catch up.  At the moment, no one is making me that promise.

I decided to indulge myself with a doctor’s appointment.  Big mistake.  I am, apparently, in good shape, save for the fluid-filled cysts on either side of my thyroid.  When I was a child, I was diagnosed with hypothyroidism which was treated with synthetic hormones.  Eventually, this disappeared but I’ve always had this small goiter on my neck (like an Adam’s Apple on a girl – awesome!)  The doctor immediately noticed this and whips out the ultrasound.  She scans my neck and manly mass and says, “Oh, you have a growth on the right side of your thyroid.”

Lady, define “growth.” 

On to the other side of my neck.  “Oh, you have a matching one on the other side!  Maybe fluid-filled cysts or maybe nodules that have to be biopsied.”

Now, I could freak out and think I might have cancer.  But instead I just decided my thyroid is retaining water in a desperate attempt to compete with my uterus (which my OB/GYN once described as “disorderly”).  Plus, I will not be blighted with cancer right now because God knows I am on shaky emotional ground as it is.

I was kind of impressed with myself.  Cysts in my throat?  HA!  I can handle that.  Give me a steak knife and some vodka and I’ll take care of it at home.  I’ve got much bigger challenges before me.  Like Henry, whom I feel like I am having to fight for on an entirely new medical front.  And Ian the Hurler.  This is not what I signed up for as a mother.

Henry & another BIG love, his Tia Evie.

Remote Insults – November 2009

Seeing how Henry was MRI-ineligible (thanks pacemaker leads!), cardiology and neurology agreed on a CAT scan instead.  We trot into Children’s one morning for our monthly blood tests (to check immunosuppressant drug levels) and then off to radiology.  Henry does great in the CAT scan – my child is becoming a real pro at medical tests. 

 I have become a real pro at denial.  I just refused to believe that anything distressing would show up on the CAT scan.  Sure, he’s had a few seizures and, yes, the EEG came back with “abnormal brain waves.”  But my child was not going to have brain damage that could actually be seen.  My boy had some learning delays but his brain just needed time to catch up.  I had not taken him this far through endless surgeries only to find out another organ was damaged.  Was not having it.

The neuro office called me with the results.  Here’s the email I then sent out to family and friends:

So, we have news from the CAT scan to determine the extent of Henry's "brain damage" and why he's had those few seizures.

Of course, the scan failed to show why he's had seizures but he's only had 3 in 2.5 years so I will focus on freaking out about other things. 

Basically, Henry's cat scan shows "volume loss" in both hemispheres of his brain, predominantly affecting the frontal lobes.  I know this is hard for us non-neurosurgeon types to understand after they told us he is having problems processing visual info which takes place in the back of the brain.  This volume loss “reflects remote insult" -- medical code for oxygen deprivation or a stroke -- either in or out of surgery.  Can't figure out who or what to blame which has always been the road with Henry except for the rampant maternal guilt.

This diagnosis does not reflect how he will do in school.   Or in their words, "his cognitive outcomes are unknown, he may have reached his learning plateau or he may continue to learn, just at his pace."  The neuro team feels it safe to assume he will have learning problems.  No kidding, the one thing I had already figured out.

Must run, mandatory crying and then bucking up on my part called for.

Love to all, Erin

I took a good ten days to be a whiner, although I had to be careful to whom I whined.  Taryn called often to check on me but who was I to complain to her?  Massive portions of Bryden’s brain had been taken in a stroke. She was just delighted that Bryden could lift his own head.   Jack didn’t know how to handle me.  To him, bad diagnosis or not, Henry seemed the same – binge eating and running amuck. This time I kept the news to my circle of CHD moms and family.  I am tired of having bad news about Henry.  Even though I know people love us and want Henry updates, I just couldn’t do it this time.  I wanted my kid to have one year where we didn’t have anything to worry about.

Pattye understood.  As she always does.  She worries about Malley having learning delays and has some evidence to justify her fears.  I knew I could say anything to her and I did.  I went all the way downtown on the Crazy Lady Express.  What if Henry never goes to college?  What if he can’t live on his own as an adult?  What if he never has a driver’s license?  What if he can never read or grasp the Pythagorean Theory (not that his mother can)?

About Day Nine of Chronic Wallowing, I realized I had fears for my boy that I had never been granted before.  Simply put, I never worried about Henry getting into college because I didn’t expect him to live that long.  It was one of those times when I felt the need to interrogate God. 

Okay Almighty, what’s the plan here?  What lesson are you trying to teach me? Because left to my own devices, I’m going to imagine my child as a mentally disabled adult who needs supervision. Special vocational training.  Lesser than I expected of him.  I wanted him to have all this in the past.  I can’t face the fact that the surgeries I insisted he have could have created this brain damage. 

I didn’t sign on to have a CHD kid but we all got him through it.  Can we just catch a break on this one?

God is, irritatingly so, quiet toward these pleas of mine.  Again, I’m not ready to know what lies ahead.  Maybe I should learn to put less value in intelligence and more in the compassion which Henry’s life, in every way, represents.  Maybe I am the one with the learning delays.

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