One Year On

Today marks the one year anniversary of Liam’s HLHS diagnosis. I remember the awfulness of the morning with crystalline clarity followed by the despairing hours as we waited to be seen by a perinatal cardiologist. I remember how hope was restored by nightfall. 

I also remember that Christmas was one of the hardest times my husband and I have gone through. Eliza was not yet two, but she was really soaking in the fun of the season and I felt completely torn on how I should feel. I expected myself to buck up and muster some joy for the sake of my daughter, but what I did was pretend during the day and cry in my husband’s arms at night. 

Today marks the day in which my projections of motherhood were shattered, glued back together, and repackaged into the brave new title of “Heart Mom.” As the saying goes, “Mommin’ ain’t easy.” How little did I know of the difficulty that would be before me. The journey to this place and time has been tumultuous. Like life passing before my eyes, I have felt every emotion and all the nuanced spaces between: happiness, fear, rage, anxiety, love, pain, frustration, despair, exhaustion, joy, depression, sadness... the list goes on. I have explored all the ways a person can feel in such a compressed timeframe that I know it will take years to unpack everything that has happened.

From what Liam’s cardiologist could tell us during that first appointment, I knew this Christmas season would either be a time of joy or a bitter reminder of what we had learned the year before. Liam would either be with us having come through two planned surgeries or he would not. We, of course, hoped for the former, but we knew the latter was a significant possibility. As I settle in each evening to snuggle my precious boy I am reminded of all the families who will mourn this season. I am reminded in particular of our HLHS neighbor in PCICU, born on Christmas Day, who died in June. I think of his parents who will no doubt taste only ash as they sit down to Christmas dinner this year one child shy of being whole. The world will celebrate around them and they will feel like strangers in a strange land. We have teetered on the edge of that abyss this year and we ache for them.

I am also reminded of the boy who received his “golden heart” this year, whose family will be able to hug his neck this season and experience the joy of life beyond all thoughts or expectations. There is no rhyme or reason why we are left to celebrate and others to mourn. We didn’t say the right words, pray the right prayers, or do the right things. We didn’t earn our joy any more than those who grieve earned their sorrow. 

But we will be immensely thankful, having seen how truly cruel life can be and we will do our best not to look towards what next Christmas will be like, knowing full well that worry does not give us a shred of control over what is to come.

I wish for you all to have the clarity and capacity to hold your family close this season and cherish their presence. It is a gift greater than all others.