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.