As we move into Heart month I am thinking about all the moms (and dads) out there who are at the very start of their CHD journey. Just today I was reading about a woman who has just learned that the child she carries will be born with a congenital heart defect. It brings it all back and I remember how lost and alone I felt at the start of this journey. I was once asked 'what would you say to another Mom about to face this?'... My response was simple. "You aren't alone. You can't do this all by yourself."
I started a book a while ago (I was even finished it until Josh went into heart failure again) and I recently read through the beginning of it again and thought that I would share my thoughts about what it was like at the very start of this journey of the heart. The following is a portion of what I wrote in the months following Josh's diagnosis. It's dark, because those were dark days for me, but if you really want to know what life is like with CHD you need to look at the dark stuff and see the dirty parts in order to fully understand and celebrate the victories. If you want to know what faith is like, you need to journey to the places where the seed of faith was stretched and fed so that it could become a shoot.
"I am the pastor’s wife, people look to Tim and I as examples, we aren’t supposed to falter. We aren’t supposed to fall. (This is of course just my perception of how we were viewed, it's not necessarily how it really is) We live public lives in so many ways and this is one of them. There is an ownership that people have over him and by association me, everyone knows us because of his job, and because of his job everyone expects high standards of faith and morality. I knew what I was getting into before marriage, I was fully aware of what would and wouldn’t be expected of me and I signed the marriage certificate. The reality though, of trying to suffer the doubts and frailties of life in plain view of those who either look to you for guidance or who look to you to fail is something that no one can prepare you for. Not that I would have made a different choice, I wouldn’t have. It just means that there is an added element to suffering and that is that you keep it quiet, you hide your doubts, you stifle your anger and you weather the storms with a big smile on your face and hope nobody notices the cracks.
I don’t know how it happened, but I slowly closed up. No longer an open and warm person I began to hide, I began to pretend. I didn’t want pity; I got angry when people said ‘I am so sorry about your son”. How dare they? I wasn’t sorry about him! He’s my son, I wanted him, I loved him, why would I be sorry about him? No one understood, except Tim but even he didn’t have the same feelings for Josh yet that I did. I felt alone, more alone than I have ever felt in my life. People would ask how I was doing and I would smile and say that I was well, that everything was okay. What was the point in telling them how I felt? I could barely put it into words myself, let alone tell someone else how I was feeling, how I was coping or what was going on in my head. Was I okay? I don’t think I even knew that I wasn’t ; worse, I didn’t know then how ‘not okay’ I really was. Something happens when you become a mother (or mother to be), suddenly your world shifts and you are no longer at the center of it, but this new little life is. Everything you want, everything you feel, everything you do is put second to your child. You make them your center, not that this is right or even healthy, but it happens. This little life is put into your care and you get a God complex, believing that you are solely responsible for their well being, their happiness, and ultimately for how they turn out when your job is done. This is usually the point in which God slaps you up side the head and reminds you that he alone is God. God didn’t smack me in the head until much later. He allowed me to move along in this lie for quite sometime, like an illness it took over completely. I started to believe it must be my fault somehow. Had I eaten something bad at the beginning of the pregnancy? Had I done something in the past that had caused this? Had I committed some horrible misdeed that I was being punished for? I began to bargain with God, begging him to make Josh well at all costs. I used all the manipulation tools that I had in my arsenal. When nothing worked, when Joshua was born barely clinging to life I began to seriously question my faith, my theology, and the cracks got deeper, the armor I wore became tougher, my smile and false front of strength became my shield against the pain."
We have now been living with CHD for more than 6 years. We have seen a lot, grown a lot, found strength, comfort and eventually peace. This is what I have learned as a response to what I wrote back then. Peace & strength comes in waves, just as the worry, fears and doubts do. I can go a full week without thinking about CHD and then one day Josh will look pale, or he will say he's tired and the doubts come, the fear and worry threatens. Tim and I will hear Josh say 'I am tired' and though it could be a totally normal response to a full day we will still share a secret look... the look that says 'is it starting again?'. Just as the moon has phases so does our emotions surrounding CHD and Joshua, so does our faith. The story of any family living with CHD is not static, it's fluid. You have to expect movement, you have to expect waves, the best you can do when the waves are high is hold on and ride it out.
What remains unchanged between then and now, what will remain unchanged from now until the day I die is this: CHD has not and will not break us, we will not give up, we will continue to fight for Josh and kids like him (those here and those not yet born). We will continue to have faith, we will continue to seek answers and hope and we will NEVER be in control, we will never have all the answers, we will always need to lean on our faith put all of our hope and belief in the God who is sovereign, the God who created Joshua just as he is, and who loves him much more than I ever will.