Dual (dueling?) truthes

I HATE this! I HATE that this is my family's journey!/I am forever thankful for the blessing of my son and the lessons I've learned along the way.

I am NOT strong enough for this!!! (thought in between gut wrenching sobs)/But I am because I have to be.

I CAN'T do THIS! I CAN'T hand my child over to the sugeons again! I CAN'T watch him suffer!(again with the sobbing)/I will because this is the hand we've been dealt and I love my child more than anything.

I don't want to do this anymore!/I will never stop. I will never give up on my child. I will forever walk by his side through this.

I am so often in awe of how such dualities exist simultaneously in my mind. For a time after he was born I gave myself room to experience the sadness and anger. But after awhile I became so frustrated that I wasn't learning to accept our fate. Wasn't acceptance the key to happiness?

Luckily I was wise enough to seek help. I met with a counselor who offered my this: "Maybe the key is not so much accepting "this", but accepting that "this" is unacceptable. Stop trying to force yourself to be okay with something that is so clearly NOT."

It took a few days to sink in, but when I stopped fighting the negative thoughts and feelings, stopped trying so hard to push them away, the positive antidotes were much more readily available to rush in and counter them. And I was in awe of how I could think both in the same moment. How I could cry and sob and feel the anguish of a mother who has watched her child suffer and will do it over and over again AND feel so eternally grateful to have a beautiful child, to have the experience and knowledge from which amazing patience and attention to every fantastic moment with him are borne. All at the same time. Tears of sorrow and gratitude in one breath.

This is so amazingly painful!/This is so amazingly wonderful!

Experiencing grief

Since the moment we received news of our son’s diagnosis I have grieved a number of losses.

The very first was the loss of having a simple, joyful pregnancy and birth experience. My pregnancy did not follow the “normal” routine of prenatal care. I was monitored much more closely and with many more tests, which although reassuring in some ways, they also served to remind me constantly that my baby was not okay. I lost the ability to choose the location and care provider for my delivery.

And at the time, most important to me…I lost any hope that my baby would be placed on my chest to snuggle immediately after birth. That I would be the first to hold my baby. That the first words he would hear would be “Mommy loves you”. I spent almost five months between diagnosis and birth crying often over the realization that my baby would be taken from me immediately after birth for tests and the potential for lifesaving intervention should he need it. I HATED that my first birth experience was going to be this.

Since his birth I struggle with a number of other thoughts. And often these thoughts trigger a brief slip into a grief state simply because it’s another reminder that this life we’re living isn’t what we expected.

Mainly these thoughts fall into the category of “things parents of healthy kids don’t even have to consider”. Things like:

-       Our son having a shortened life expectancy

-        If he makes it to adulthood will he find a woman willing to marry him, given his risk of early death? Seriously, how many women are willing to marry, and then have children with a man with such high chances of dying before middle age?

-       Will he be able to work and be self-sufficient?

-       If we decide to stop with one child, what happens to the Mommy part of my identity when he dies? How can I be a Mom if I don’t have a child to take care of? (Not a good reason to have a second child, but I’d be lying if I said this thought didn’t cross my mind.)

I realize that even parents of healthy kids don’t get any guarantees either. However there are some moments when I would like to be able to assume that my child will grow up and have a “normal”, happy, healthy life. All I can do is hope that his life is a happy one, regardless of the lack of health and normalcy.

I grieve the loss of the ability to easily relate to parents of other young children. Seemingly simple conversations about “normal” toddler things like feeding, potty training, or sleeping turn uncomfortable because most everything comes back to my son’s heart defect. If I give the brief, simple answer it appears I’m being stand-offish because I’m not really conversing about whatever the topic is (e.g. “No, we’re not pushing potty training yet.”). But, if I give the honest answer (e.g. “We’re not pushing potty training at this point because it’s going to be a little bit of a battle and he’s going to regress with his upcoming surgery anyway…”) then the conversation stops because the other parent isn’t quite sure how to respond and now the moment is awkward.

Most recently I’ve come to recognize that all along I’ve been grieving the loss of hope for something better when it comes to options for my son’s cardiac care. I recently came across information that a major research institution is studying the use of autografts made from patients own bone marrow in the Fontan, instead of using artificial conduits. In other words, Fontan patients are getting new veins to connect the inferior vena cava to the pulmonary artery, which have the potential to grow with them and not need to be replaced! I was in tears by the end of this journal article, and I realized that they were tears of joy and relief that something new might be coming out of cardiac research…IN MY CHILD’S LIFETIME!

I didn’t realize before this that much of my grief has been because I was struggling to accept the status quo in cardiac medicine. Struggling to accept that which I know has risks and negative implications for my son’s life expectancy and quality of life. Simply put, I wanted better for my child and not only could I not provide it, but the current state of cardiac medicine couldn’t either. I was grieving the loss of hope for a better choice, better outcomes.

I’ve learned over the past couple of years that this cyclical, ongoing grieving will be a constant presence in my life. My husband and I will always have to acknowledge the loss of our dreams, of “how it was supposed to be”. We will always grieve as we watch our son suffer through pain and illness, as we watch him grow up and come to terms with his limitations and mortality.

Yet, even as I grieve, I feel eternally grateful for all I have learned from this journey of ours. While there are certainly days I would love to pack up my family and take a vacation from Holland, I am forever thankful that we’ve been able to absorb the beauty of it.

A perfect way to describe it

Welcome to Holland

An Essay by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum.  The Michaelanglo David.  The gondola in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands, the stewardess comes in and says, "Welcome to Holland".

"HOLLAND?" you say "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It's just a different place.

So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has windmills.  Holland has tulips.  Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
 

Let's take it from the top...

Our story begins...

It was my first pregnancy. Our first baby. We were thrilled. Excited.

But not naïve.

A number of years ago my aunt gave birth to a beautiful little girl. She was born with a number of congenital defects. She never left the hospital and died at four months old. I saw what the experience meant for her parents. The impacts have been great and long lasting. I don’t think there would be any arguments if I were to say they were changed, permanently.

After bearing witness to that I always thought (and even said to a few people) “People should not have children unless they’re willing to accept the risks of losing them, and the pain that goes with it”.

I meant it then, and that belief is stronger now. After finding out I was pregnant I was hopeful that there would be no problems. Even though I knew there could be, I was still hopeful. Because the odds were on our side. Or so I thought. And so I spent the first half of the pregnancy talking myself out of my fears. Trying to shush that nagging teeny, tiny little voice in the back of my mind reminding me that nature isn’t always “perfect”; anomalies are more common than we’d like to think.

We agreed that the only prenatal testing we wanted was basic blood work and an ultrasound, to make sure the baby was healthy. We went to the ultrasound excited to see images of our child. To relish in counting fingers and toes, watching movements, and getting our first pictures. Towards the end the tech had me get up and move, to get the baby to turn because she wasn’t getting a good view of the heart. My gut started to speak up then, but I ignored it. When the tech said I would need to come back again the next day so they could try again “because the baby is in a bad position and we just can’t see what we need to see” I shoved my gut and all it was telling me out the door, all the while covering my ears, yelling “I can’t hear you!!!”.

I went back the next day trying desperately to ignore my nerves.

I did not consider myself naïve going into the ultrasound. But I still came out devastated.

The second ultrasound was on a Friday, late afternoon. They confirmed my worst fears. There was something seriously wrong with our baby.

And flooding in came: Devastation, Guilt, Sadness, Guilt, Anger, Fear, Terror…and did I mention Guilt?

Unfortunately the radiographer could only tell us there was “something wrong with the heart” and give a description of the findings, and that I would need a more detailed ultrasound for more information. This ended up not being scheduled until the following Wednesday. We had to wait almost five days to learn the exact diagnosis, and more importantly what it meant.

After almost five days of hell, we were well taken care of the day of the next ultrasound. We met with a perinatologist, who immediately called the pediatric cardiologist in the same building and got us an appointment with her “in 15 minutes”.

It would be an understatement to say that was a difficult day. We had a ton of information thrown at us…Tricuspid Atresia, normally related great arteries, VSD; pulmonary artery banding vs BT shunt. Glenn. Fontan. Oxygen saturations. Etc. Etc. Decisions presented to us. And in the end no guarantee that our baby would be okay. Statistics that told us he could possbily be…to an extent. And only after multiple open heart surgeries.

The decision to continue with the pregnancy was not hard for me.  I had already felt the baby move by this point, and was very much emotionally attached. The way I felt at that time was that I would appreciate every single moment I was given with the baby, no matter how little or how much.

And so I spent the rest of my pregnancy juggling hormone induced emotions and situation induced emotions. Happy, sad, ecstatic, joyful, terrified, angry….you name it, I felt it (still do if I’m being honest).

And here we are a few years later. BT shunt at 8 weeks old, with a little scare shortly after the surgery. Glenn at 9 months old with a record setting (anecdotally, from the nurses) release from the hospital just 70 hours after surgery!

And I have kept my word. I appreciate every single moment I spend with my son. I knew before I was pregnant the lessons of being mindful and open to every experience, good and not-so-much. But I have to say that living this experience has changed me in profound ways. There are a lot of emotions I still struggle with (more to come on that), but in the end I am in awe…of him, of my husband and our family, of what it means to love someone fully, all while facing head on the fear of losing them.

After we found out I thought “even if we only get to experience the pregnancy, that can be enough”. I know better now.  A little over 2 ½ years in, with the Fontan looming in the very near future and I know that no matter how much time we’re given, it will never be enough. How could I possibly ever have enough of the little person who makes me laugh over and over on a daily basis? Who never ceases to amaze me with his powers of observation?

There is a blog, Adventures of a Funky Heart, written by an adult Tricuspid Atresia patient named Steve Catoe. Steve was 44 years old when he passed away last November. And I guarantee his parents did not find 44 years to be enough time with their son.

So now I will admit…I was naïve. Naïve to think that “any amount of time I can get” is enough. There will never, ever be enough time with my son. I’ve heard busy parents of healthy children say “it’s about quality, not quantity”. What a luxury it would be to hold that belief! For me it’s become about both. I want to make the most out of every possible second I can possibly get with my boy. And so we make sacrifices. A lot of them. And I will never regret a single one.

No, it really IS different.

More then a few time in the past few years when I've let my guard down, or just completely broken down, in front of someone and talked about how terrified I often (always?) feel in regards to my son's CHD and that he might (will?) someday die (and likely before I do), I've been met with a response along the lines of "Well all parents worry about that! All parents live with the fear that something could happen to their child."

And in the past my reaction to those statements has always been:

Aloud: "I know. You're right"...followed by a change of subject.

Mentally: "But, it's different!!!! It is! And you're lucky you don't get it!!!"

Finally, a couple of weeks ago, while driving (which is where I do most of my thinking & crying) I finally was able to articulate (at least to myself) exactly how it's different.

While all parents hold some worry that something might happen to their child, they are also able to hold that something might not. I do not have that luxury.

I have those same fears. But I DO NOT get to hold that something might not. Because essentially my child is holding a ticking time bomb. We know this 100% for sure. We have pictures and written documentation to prove it. We just don't know what the countdown timer says. It could say 10 seconds, or it could say 30-some years.

In other words, I fear all the same things other parents do (car accidents, fires, drownings, kidnappings, etc.) and I live in fear EVERY DAY that this ticking time bomb will go off sooner rather than later. Because if one of these other things don't kill him first, his heart (or some related complication) will.

And that's how it's different.

Caving in.

We learned about our son's heart defect at our 20 week ultrasound. It wasn't long before I had become familiar with dozens of blogs from other heart families. I've read stuff that terrified me. I've read a lot that provided some relief. I've been reduced to a weeping puddle more times than I can count (although that also happens spontaneously and without the help of blogs).

Since our son was born I've debated writing my own blog. I need an outlet. A way to share my thoughts and feelings, good and not so much, irrational and rational. And since I'm not one for journaling, this is the next best option. But I've held back because most that I've seen include pictures and names, the entire story of a heart child's and heart family's journey. Which I've appreciated. I think I feel some connection with these families because of how open they've been in their sharing. But, much of what I've been debating revolves around how much I want to reveal publicly. Because as much as this is the story of my journey as a Heart Mom, it started with my son's journey as a Heart Patient. That leaves me feeling like in all of this I must honor him, and his autonomy, in telling the story. Not to mention that (if I'm being truly honest) the thought of putting all of this "out there" by name terrifies me, and there is some comfort in remaining anonymous.

So here I am. Trying to hide, yet be heard. And validated...because even though my husband and I go through this together, I still feel very alone sometimes. We grieve very differently and neither one of us can be everything to the other 100% of the time. So I'm simply here to process. To get my thoughts in order and share them with anyone else who might identify.