My journal reads:

Christmas came and went filled with the sort of spirit that makes me want to imbibe spirits.  Henry was a lamb in the nativity play.  A bellowing lamb singing his own sacred carols such as “I’m a Barbie Girl in a Barbie World.” Again, Ian tried to hold out for the role of Luke Skywalker. Henry became incensed when the understudy baby Jesus was given to Gwyn to hold on stage.  He handled the situation by trying to actually sit on the baby.   

On Christmas Eve, we hosted a cookie buffet at the PICU for families staying there.  Pattye  (Malley’s mom) helped me pull it together and of course those incredible nurses.   I met a two year-old, Geni, who had a heart transplant at four months old.  She was back in the hospital for other stuff.  Her mother, Megan, is great – we plan to do lunch.  I need to be with someone who has been on the other side of this.

We served over 20 families and Henry and Malley roamed the halls handing out candy canes.  Again I was struck by how many poor families are present.  Families living in the waiting room and eating from vending machines because they can’t afford the $3.00 cafeteria meal.  Families where only the 8 year-old speaks English. Families ravaged by addiction, little opportunity, no winter coats, no cars.  You try to not make judgments as you had them a cookie tin to fill but that mother could not be older than sixteen. The grandmother who asks if she can take an extra candy cane for her other, healthier grandson. So many of them seem broken, celebrating Christmas in the last place anyone wants to be. 

Going to Stanford has changed me, again.  Even as Henry’s condition becomes dire, I am beginning to feel more in control, like I am achieving equal footing with the doctors who treat him.  I have learned that how doctors treat you is based on how much information they perceive you understand.  Five years into this, I understand a lot. 

Now I ask questions that set doctors aback but effectively changes the tone in which they speak to me. 

“Who will be opening my child up before you arrive in the OR?”

“What do you expect to happen if Henry comes out of surgery still on the bypass machine?”

“When you say his survival rate is 70%, what factors are you considering?”

The medical profession has been well trained to only disseminate the amount of information the family seems able to handle.  We, the family, set the bar for how doctors will speak to us.

The doctors say how much they appreciate “parents like you” – researchers, bulldogs, always present, always taking notes.  But I know I also put them on edge.  When they don’t look me in the eye, I move so that they have to.  When I don’t understand something, I ask them to explain it.   And I come prepared with the Henry binder – meds listed, past surgical reports, copies of our insurance card.  I ask what happened at conference each time Henry’s case is discussed, having learned that the impressions doctors take from those reviews differ amongst them.  I took my business cards and had labels placed on the back with all cell phone numbers and emails, giving them to doctors with the spoken expectation that I wanted to hear from them again.  I am sure I annoy them.  I don’t give a damn. 

When your child is in the PICU there are multiple players involved – doctors, surgeons, nurses, technicians, therapists and the family.  But the inner triad is really between the MDs, nurses and the parents.  I had to insist that I knew my child best.  While all the wonderful medical personnel were compassionately treating his condition, I was Henry’s ultimate caretaker.  It was up to Ned and me to fight for him, to remind the doctors that he may be Protein C deficient, to insist that I remove his EKG strips because I could do it without him freaking out, that an O2 sat of 76% was normal for my boy.  Sometimes it distorted my sense of motherhood because I felt more like a social worker or lawyer.  I needed to present his case, insert myself into dialogues and always, always, remind the doctors and nurses that Henry’s parents were keenly watching them.  Being emotional, being the heartbroken mother happened privately but it splinters your personality.  I was devastated and trying to be in charge at the same time. 

You cannot buy your children enough Christmas gifts to help them overcome tremendous sadness.  Ned spends as much time here as he can but Gwyn and Ian understand that there is no going back for the two of us.  Now we’ve told them that their brother needs a new heart. 

Of course they had questions like “Where will you get a heart?”  “Will Henry die?”  In my daughter’s brief life, she has lost her aunt and both of her paternal grandparents.  She can barely remember a time before her “broken baby brother” was born.  Her parents divorced.  It is too much for her, for Ian, but I don’t seem to be able to provide a more stable life for them.

Ned and I tell the children that we don’t know when Henry’s heart will arrive and that he may not make it.  I can hear therapists around the world gasp at my horrible handling of this situation.  I don’t want to give them more information than they can process but I can’t lie to them either.

Ian thinks that getting a new heart is like special ordering hardware.  “Can we get one at Home Depot?”

We do the best we can.  “Sometimes children are hurt very badly in accidents and their bodies die.  But you know that God is holding them.”  I don’t want them to dwell on this.  In a child’s mind, organ donation must seem incredibly violent.

We also tell them that nothing is going to change right now, as if there is anything left in their lives that could be changed.   Mom is going to take Henry to St. Louis to visit his new transplant doctors in the next several weeks but that she will only be gone for a few days.  Everyone is heading back to school after Christmas break, Henry included.  Mom will wear a special beeper.  When that goes off, it means a new heart is waiting for Henry in St. Louis.

Then it’s like the other times Henry’s had surgeries.  Mom and Dad will be gone for a while but grandparents, aunts and friends will come and spoil you rotten.  Then, all three of us will come home and Henry should be doing much better.

“It will all turn out fine.  You’ll see.”

Gwyn leans against me and says, “You’re good at being brave.”

Cardiology Letter

Digging through email today, I found a letter our cardiologist, Dr. Ward, wrote concerning Henry’s case in 2006.  It was written about the time cardiology here realized we had run out of options and that Henry needed to go on the transplant list.    Several months later,  I informed them we were going to Stanford to get a second opinion on whether more surgical repairs could be done. 

I reread the letter and thought to myself, “Wow, this kid was sick.”  Even though I knew Henry had a bad heart, this letter spoke of all the ways he was sliding toward heart failure.  But bless our cardiologist -- he really did try to put a nice spin on it.

Here are some of my favorite excerpts along with my smart ass commentary.  Italicized portions are my response.

“I had the pleasure of seeing Henry for a follow-up evaluation today.”

The pleasurable part was probably not when Henry used the blood pressure cuff as a lasso. Or coated his hair in antibacterial  gel.

“He did have problems with acute fluid retention and ascites”

Ascites is “accumulation of serious fluid in the peritoneal cavity.”  This sounds like PMS which, also, has no sense of humor.

“Physical examination today reveals an active and playful but obviously fluid filled 4 year-old young man with a large protuberant abdomen and moderate cyanosis.”

This image cracks me up, probably because Ward referred to him as a “young man.”  I think of my slightly blue, pot-bellied son wearing an ascot.

“HEENT is grossly normal with lip cyanosis.”

HEENT means “head, ears, eyes, nose and throat.”  Had to look that one up.  But “grossly normal?” What in the hell does that mean? I have seen my kid, he is grossly handsome.

“The neck is supple with dramatic venous distention of the external jugular venous system.”

OK, I’m going to be honest here – that just sounds a little bit pornographic.

 “I discussed with the mother…[that] I think we are very close to referring him to St. Louis for an evaluation.

True, he did discuss this with me.  And I kept looking around the room wondering what mom he talking to.  Certainly not me.  Not my kid.  We didn’t need a transplant.  Henry was going to be fixed by just one more surgery, right?

Wrong.

Transplant Evaluation, St. Louis, January 2007

It seemed as if everything was falling apart.  Ned and I we were divorcing and this made for a sad household. Then, we had to turn around and tell Gwyn and Ian that I would be leaving again because their little brother needed a heart transplant.  We overwhelmed them and I can hardly claim that I was doing my best mothering then.  I foolishly thought that I’d have time to keep a close eye on them but the transplant evaluation process moved much quicker than I expected.  By the first week of January, St. Louis Children’s called with our appointment for mid-January.  In my journal, I wrote:

Henry and I arrived in St. Louis on Sunday night and there was no room at either Ronald McDonald House so we stayed in the hotel attached to the hospital for a $100 a night.  Ouch. That and $800 airfare was a lot to financially absorb this month. 

Bright and early Monday morning Henry began all his testing – starting with them taking 11 vials of blood from my 33 lb kid.  Then a neurological evaluation where the doctor asked Henry to tell her how many legs a horse had.  Henry’s response was, “You tell me.” 

Off for chest x-ray, echocardiogram and an EKG.  Followed by meeting the transplant team – the director, Dr. Canter, and our coordinator, Kathleen, are so easy going.  I am coming around to the idea of a transplant.  Only because it is the only option we have left.  We met the transplant surgeon, Dr. Gandhi, whom I grilled, making sure he had all the consult notes from Stanford and Oklahoma City.  Doctors sum parents up quickly it seems – that one can’t understand what I am saying, this one is expecting miracles from me.  I guess doctors look at me and think she takes notes with such ferocity that she may be a malpractice nightmare.

While we were waiting to meet the TX (transplant) team, I looked around at the other families in the waiting room.  All the while Henry is literally running his tongue across the front of massive fish tank as if he could somehow absorb the water through the glass.  Then he is trying to climb up onto the window ledge.  Just like my kid to try to find a way to need stitches in the midst of us trying to get a heart transplant.  But most of the kids are jumping off benches, crawling under tables, deciding whether they, too, want to lick the fish tank.

And the parents look as if they are on their way into or out of a concentration camp. Scared, exhausted, pissed.

After the TX team, we had a CAT scan with IV infused contrast. Henry freaked out because he had to be restrained, endure another poke and the machine makes weird sounds.  And he bled out when the IV went in – thanks blood thinners!  We both looked as if we had sustained major wounds.  We ended the day with a 30 minute ultrasound of his neck and groin vessels – to find the best route for future caths, I assume.  Henry left the hospital exhausted with about 35 stickers – pointless rewards for what, to him, seemed like enduring pointless pain.  He threw the stickers in the trash.

That night while we were waiting to pick up dinner in the hotel restaurant, a man started choking.  Nobody did anything until I went into EMT-hysterics mode and started yelling at the guys at the bar to start the Heimlich.  Notice how I didn’t do anything for the poor guy – just assumed the town crier mode.  I am sad to say that the event hardly affected me at all, I am too stunned by what is happening in my own life.

Tuesday morning we had the psychological assessment.  No one ever tells you directly what they are assessing but we had a lovely clinical psychologist who works specifically with TX families.  I sat there and puked up the last five years of our stressful lives while Henry touched every damn thing in the office except the toys she had laid out for him.  My inner dialogue was “Shut up Erin, pace yourself – the notes she is taking surely say ‘bat case mother, family is not good candidate’.”  But, in the end, she did not seem overly alarmed at my state and passed along some very good advice.

She was asking me how I was doing in terms of familial support – who was helping us with our other kids, travel arrangements, etc.  I told her we had family and friends who would do anything for us but they lacked coordination, knowing exactly how they could help.  It really is too much for me to stay on top of Henry’s stuff, continue working and then mastermind how I am going to keep my house running every time I have to drag Henry off somewhere.  The psychologist suggested I appoint my most organized, Type A friend to serve as command central while I am gone.  She would be the one to arrange the meals, coordinate kids’ transportation, find someone to take the dogs.  You appoint your drill sergeant and she has a team of five people or so that are in charge of certain tasks – Jim will see to mowing the lawn, Jennifer will take the two dogs, Cheryl can come in for laundry. I haven’t decided which unfortunate friend will get this drill sergeant job but it is so helpful to have a plan for how people can help us out.

I am fiercely independent – I like to help people, not need help.  I like being the center of attention just not the most tragic case in the room. This foolish mindset has been amputated from me because there is no way I can do it all.  I can’t even fix my kid.  I am neglecting Gwyn and Ian.  Today I feel like I have no business being a mom.

After my “psycho assessment,” we met with the financial coordinator which I was dreading.  I knew a heart transplant cost, on average, $500k.  I also knew that TX personnel encouraged families to hold fundraisers.  Now, really, how in the hell was I going to ask people to give me money with my good Southern upbringing?  I kid you not, I find this incredibly tacky for myself to do but would, of course, do it for anyone else. 

I am incredibly fortunate to have very good medical insurance.  And so while this TX will be a huge crunch on my family’s finances, I think we can actually survive it – assuming St. Louis Children’s will accept payments of $10 each month for the next 70 years.  I kid!  Sort of.  But as I sat with this wonderful woman who has the difficult job of telling families what it costs to save their child, I really did get angry.  Not at her but at the fact that a lot of families have no options.  Imagine if you were someone with very limited financial resources and no insurance.  Perhaps state aid programs can cover most of the surgery but what about the doctor consult bills, lodging, airfare, meals?  What if getting your child a new heart means you lose your job because your employer won’t give you two months off?  It is damn unfair.  How are you to pay for the TX meds afterward – to the tune of $3000 a year forever?

The financial coordinator showed me a cost graph that included the organ retrieval fee. This is essentially the cost of having surgeons fly to the location where the donor child is, removing the organ and flying back. $75,000. That is not a Southwest Airlines fare, I’m sure.

Never believe that the US medical system is democratic.  I absolutely know that Henry had the best medical attention based, in large part, on the facts such as: his parents could afford appropriate levels of insurance and Ned and I  were educated enough to know how to do research, get second opinions and dialogue with doctors at a level that let them know we weren’t nimrods.  Do I think that how I dressed, the color of my skin, Ned’s presence, the vocabulary I used made a difference?  Absolutely.  Doctors quantify and qualify their patients’ families based on brief interludes.  Sad but true.  Long ago I learned to think of doctors as exceptionally trained service workers.  They are to provide me with a service and I will not go into their domain beholden to them until they fix my kid.

And so, now I am thinking about a fundraiser.  This really messes with me mentally – right after knowing that another child has to die for Henry to have a chance at surviving. What am I supposed to do?  Ask a friend to host a bake sale, a gala? Put Henry’s face on a jar at the local 7-11?  How did I end up so bankrupt – not just the money, but in terms of being able to keep my family going?

I’m lucky.  I don’t need to raise $500k.  But I will have to sell a beloved property that I always thought I would build a cabin on.  I need a voodoo ceremony done on my car so that it will last another year. No more eating out at lunch.  I know, stupid sacrifices compared to what other families (with ill children or not) must endure.

After financial planning (I really was so grateful to this woman who greatly diminished my money fears), it was off to meet the child life specialist and social worker.  Both were so chipper that I nearly fell face flat on the table trying to maintain a quasi level of enthusiasm.  Then the big consult with the TX team at the end our trip.

All along I had been obsessing about one blood test.  For TX kids, the doctors need to verify what levels of antibodies your kid has – antibodies that are too high can make it more likely that the body will reject the foreign organ.  Henry has not had a lot of oral antibiotics for ear infections and so forth. But he certainly received a lot of antibodies with blood infusions through all those surgeries.  So the doctors at Stanford and St. Louis had prepared me for the fact that a high level would mean we would have to entirely suppress Henry’s immune system before TX.  Fabulous. We have to endanger his life again to try and save it.

Well, just like Henry to defy all expectations.  His lab report came back very low for antibodies – so low that Dr. Canter said he had no real medical explanation for it.  Fine by me.  Doctors need scientific proof, I just need my kid to get well.

The TX team was very positive about Henry’s outcome – the surgery itself has a low mortality rate but surviving that first year is the real challenge.  If we can get past that, who knows? 12 -15 years?  Henry’s case is a little more complicated in that he had the hypoplastic surgical series and therefore the surgeon isn’t exactly sure what he will encounter once inside Henry’s chest.  Before they can transplant his heart, they actually have to reverse many of the repairs they have already made so that the new, better heart will fit properly.  This makes me feel like I traveled a great distance down a highway only to discover I missed my exit and now need to turn around.  Except that this is about the choices I made for Henry in the past six years and they all turned out wrong.

The transplant team stressed that they do successfully transplant hypoplastic kids.  Henry was listed as a 1B.  1A kids are the most critical – most often in the hospital or on an IV infused life-saving medicine.  They get hearts first.  1B’s are either in the hospital or at a level of heart failure in which their growth is severely compromised – the latter being Henry’s case.  Level 2 kids are at home, probably doing well but will, at some point, need a transplant.

How long will we have to wait?  I don’t know but I was told to expect several months.  The downside of all this is that Henry may get very sick (and be classified as a 1A) before his heart comes in.  Either way, to quote our transplant coordinator, Kathleen, “it’s just a matter of time.”

Through the Fortune Cookies (January 2008)

God is speaking to me through fortune cookies.  I know I may be excommunicated for this (or whatever it is that Episcopalians do to punish heretics) but it is true. 

When Henry was in the hospital during that first year, my mother or mother-in-law would force me to leave the hospital at least once a week and the only place I could stand to go was a nearby Thai restaurant.   And each damn time, after I picked at my pad thai and spicy lime pork, I’d open my fortune cookie and be stunned.  Perhaps I was reading into things.  Perhaps not.  My five fortunes arrived to me in this sequence:

Good things come in small packages.

A handful of patience is worth more than a bushel of brains.

Good things come to those who wait. Be patient.

The star of riches is shining upon you.

You have so much to be thankful for.

Okay, so God may have more urgent messages to deliver than little tasty inspirations.  But when you need something to hold onto, when you are struggling to tether your faith, you too will find yourself believing in fortune cookies.

I have saved these fortunes.  They are in a frame on my refrigerator right next to the picture we took of Henry on his first day home.

I’ve eaten a lot of Asian food since then and gotten those fortunes that make little sense.  “A sun dial in your home will sweeten your dishes.”  “A goldfish in one hand is better than six trout under your feet.”  Um, okay, whatever. Pass me another wonton.

The day we finished at St. Louis, ending with the transplant team conference, Henry was exhausted and just wanted to get away from the hospital.  I loaded him up in a taxi and took him to the Union Station Mall downtown on a cold, rainy night.  We walked around the food court and he settled on Chinese food.  We ate greasy noodles and chicken of indeterminate saucing and topped it off with a fortune cookie.  Henry’s read: “Get ready for all your dreams for the future to come true.”

The Pager: January 2008

The pager arrived from St. Louis Children’s.  Two things immediately happened.  I felt nauseous and I had to snatch it out of Henry’s hands because he wanted to dismantle it.  Maybe he sensed that little black box has evil designs on him.

How did I get here, holding a beeper that holds my kid’s life in its wiring?

I wear the pager all the time, except when I shower.  Then I set it on the back of the john and obsessively tear back the shower curtain to see if it has gone off.  This neurotic habit ensures that I can only shave one armpit per shower (forget shaving my legs). At bedtime, I check to make sure it is working, then I wake up every hour to check again.  I have invested probably fifty bucks in replacing the batteries, I would never let them run low.

I have so much left to do.  I need to have our bags packed.  I need a child care plan for Ian and Gwyn.  All of the insurance has been handled, we’re preapproved for a new heart.  But I still need to come up with a lot of money for our travel, lodging, food and keeping the house running while I am gone.  I got my Family Medical Leave approved at work.  I guess I’ll be gone for two months. 

I’ve made arrangements with the medical transport jet that will fly us to St. Louis once a heart arrives.  They guy I speak with is funny, maybe because he has spoken to so many hysterical moms.  He reminds me that the plane is small and so that our luggage is limited.  And that, by the way, no matter how badly I crave tranquilizers, he discourages parents from popping pills before they board.  Apparently, there will also not be any cocktail service.  Believe me, I asked.  He asks me several times if I know where the small business airport is. I vaguely know that part of town.  Make sure, you know how to get there and that you drive calmly and safely.  Sure buddy, just like catching a flight to Acapulco.

I am reminded of the times I was pregnant and people would incessantly call to see if I was in labor yet.  Similar calls come in now. There is no answer for when Henry will get a heart.  Well, there’s one answer.  Henry’s heart will come when another child dies and it is a good organ match. 

I try to imagine our donor family and I come up with nothing.  I pray for Henry to have a new heart all along cajoling God to not take another child’s life in the process.  I have decided that I am God’s most annoying child.  Always asking for something, pleading, and then it’s just never enough.

Shit.  I have done a lot of damage.  I ended my marriage.  I bore Henry, broken.  Then, I have spent so much time on his needs that my other two children have become experts on raising themselves. 

If my son dies, there will not be much of me left.  I try to muster up the energy to be pissed off but I just can’t.  Before, when people said to me, “Live one day at a time,” I found that irritating.  Now I just tick off the days because whatever lies ahead is beyond my brain.  One more day and the pager hasn’t gone off.  One more day where I went to work and Henry trotted off to the school bus. One more day closer to him dying, I guess. 

Check out Henry’s big belly – the dreaded protein losing enteropathy.  Also notice the ultra tacky wood paneling in our den – another major home project that I had neither the time or funds to tackle.

Brady

On Feburary 3, 2007, Brady, one of Henry’s classmates, died after a long struggle with RSV.  February 3 was also Brady’s sixth birthday. 

Brady was this bright and funny boy trapped in a body where nothing seemed to go right.  He had been sick a long time -- RSV, other infections, on the ECMO (external heart bypass) machine and nothing could turn him around.  I think his parents, Heather and Mark, had to make a choice. 

I had visited Brady a few times in the hospital.  It can’t be described.  More machinery than any child should endure.  Heather fought like hell for this kid.  She gave her life for six years – chest treatments, feeding tubes, a permanent trach, sign language, surgeries, PT, OT, dozens of ER visits, navigating this unbelievably complicated medical , social services and special education world -- so that her youngest son could have his own life.

Brady was so damn comical.  He would sign to me at warp speed but I’d have no idea what he was saying and he’d just get disgusted with me for being so inept.  Heather and I swapped carpooling the boys to preschool.  I can remember lugging the two of them out of car seats and trying to figure out, in the dead of winter, which one I would carry and which one would have to walk.  Brady was not one to let me carry him.  He arrived at school ready to be an independent boy.

We all knew he was dying.  Those of us not in Brady’s family would visit and then go home, hug our children, cook dinner for them, relieved that this was not happening to us.  Heather, such grace.  She laughed and cried and I knew I was in the presence of a mighty woman. Mighty and heartbroken.  Present.  Part of her also dying.

When I came to the hospital on Brady’s birthday, he had died about an hour before and I didn’t know.  I had Henry and Gwyn with me. Heather was not in the waiting room but Heather’s sister stepped out to tell me the news.  Gwyn had wanted to see Brady but I had to tell her he was gone.  Gwyn adored Brady and he had taught her a good deal of sign language.  Henry wanted to know where Brady was but then settled on the plate of chocolate chip cookies instead.

Brady’s dad asked me if I wanted to go in and see Heather.  I left the kids in the waiting room.  The curtain to Brady’s room was pulled closed, the ward nearly empty.  Heather was lying with Brady, crying quietly.  She curled herself around him and motioned for me to join her. So I curled myself around her, all of us in one PICU bed. 

She said, “I tried.”

Of course, she had tried. She had done everything she could to save her youngest.  If she could have given him a set of lungs that worked and all of her immune system and anything else, she would have.  Heather was Brady’s champion.

I told her no one had fought harder for Brady.  That Brady didn’t die because everyone hadn’t poured all they could into him, his mother especially.  Because I had nothing else to say, nothing helpful.  Nothing that would even minimally slow down that avalanche of grief.

But that wasn’t what she meant.  “I tried to get the doctors to give Henry Brady’s heart but they said it was just too sick after all the medications.” 

I could not fathom Heather, in that moment of letting Brady go, spending even a second worrying about another child. Perhaps motherhood is the passage by which we learn to love beyond our own.

Brady had the best head of hair.  Wavy and lush and sort of that silvery brown color that you see on fawns more than people.  His hair today was brushed back, so many people had come in and left their blessings and tears on his head.

Brady’s memorial service was held the following week.  I wrote in my journal:

I can only say it is a week of wildly different emotions.  I have been overwhelmed with people offering to hold fundraising events and buy “Team Henry” t-shirts and virtually adopt my family at a moment’s notice.  And then Brady’s funeral last Thursday.

It seemed as if every one of Brady’s teachers, nurses, aides, even the graduate student who worked with his speech therapy were there.  So many family and friends.  And Gwyn, Ned and myself in the back row.  Me wringing my Episcopal rosary hoping the Pentecostal minister would not find that offensive.

Then Heather and Mark and their two other boys came in.  Down the long aisle and wailing, the sound of a family being cracked open.  Beautiful music and the acknowledgment that today is impossibly hard for this family.  No one wanted Brady to continue suffering and yet none of us wanted to give Brady up.

One of the older boy’s coaches had written this amazing letter about Brady – how being a boy and not being able to play sports was, in the end, no loss for a kid like Brady. Brady who found joy in balloons and noisemakers and being able to climb the bleacher steps himself.  The boy who danced through his days, with or without music.  Mark wrote an achingly beautiful poem about how his smallest boy had taught him to be a bigger man. 

After the eulogy, there was an open period for other people to come up and speak about Brady.  No one came forward at first which sometimes happens and is certainly not a reflection on how missed the person will be.  But then my glorious, wise daughter stood up and was down the aisle before I could react.  She began with “Sometimes your best teachers are shorter than you are.”   She went on to talk about how sometimes hospitals cannot fix what is broken (how heartbreaking my girl already knows that) and then how Brady had taught her sign language.  She ended with a theme that had been repeatedly spoken at Brady’s service.  There are physical disabilities and then spiritual ones.  Brady’s physical limitations could never outpace his spirit.

Brady’s picture hangs on our refrigerator to this day, him rocking out in mirrored sunglasses, his head cocked to the side, inviting all of us to join in on his dance.

February 10, 2008

I am sad about Brady. And I’ve been imagining the conversations the doctors and nurses had with Heather when it became clear Brady could not survive all that he had been through.    I feel like I am so close to losing my own child and yet can’t imagine what Heather is going through.  I went through most of this week swinging between tears and feeling numb.

But then I had lunch with Megan who I met while her daughter, Genesis, was in the PICU over Christmas.  Megan and Geni came to the cookie buffet we held in the waiting room and I was so relieved to meet a mom who had gone through her kid’s heart transplant.  Geni had her heart transplant at four months old when her own heart had only a 15% function.  She was placed at the top of the list for St. Louis.  I can’t remember why Geni was back in the hospital over the holidays except that her new heart was misbehaving.

I took Megan out for a Brazilian lunch and she shared her story.   Turns out, getting a new heart for your kid has its funny moments.  Sometimes medical personnel are just clueless.  Like when the pilot flying Megan’s tiny baby out of state for her transplant announced he didn’t have space for mom to come along.  As if Megan would just let Geni go solo for her heart swap.  Megan crammed herself in next to the co-pilot and they took off in the middle of a midnight ice storm. The pilot told her to not touch anything as if, in her hysteria, Megan might hijack the plane to Bali instead. 

The St. Louis transplant team gave me a big binder to read while we’re waiting.  All it does is freak me out.  I find it more comforting to listen to Megan.  The binder is chockfull of information on what I am supposed to do but I need to know how to cope, how to get through the waiting.

Megan is normal or, as Pattye likes to say about us, “normal – for a PICU mom.”  Whatever emotional trauma she’s sustained she has learned to live with as her own chronic condition.  She’s funny and optimistic all the while acknowledging her child has been through too much.  We’re a mama crew who begin each day with backpacks to find, runny noses to wipe and the sorrow that our children may die. 

What amazes me about Megan is that she’s probably a decade younger than me and this is her first and only child.  Her beloved Geni had a heart transplant when just an infant and the new heart is not performing as well as it should.  But Megan is trucking through, determined to see Geni have the best medical care all the while ensuring she also gets to be a little girl. 

I would have never known Pattye, Megan, Heather, Janet and others if my own beloved had not been born with his funky heart.  I wish I had given birth to a perfectly healthy Henry but what a blessing I would have missed if I had not met these women.

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