Life, The Universe, & Everything

Douglas Adams surmised that the answer to all life’s questions was 42, I presume because the number 42 feels just as likely an answer as any other in a world where so much pain and suffering exists. I can’t say I blame him.


And while I know the answer is not so arbitrary as a number, I can say I have often questioned my understanding of life, the universe, and everything as I’ve walked this difficult path with my son. Why should a little baby have to suffer so much? Why can’t I be a normal mom with normal kids? Why me? Why? Why? Why?


It sounds really whiny when I think on it. After all, do I really think I’m the only person who is living a life they didn’t sign up for or expect? Do I really think my suffering or my son’s suffering is any more awful than the next person’s?


The truth is everyone suffers- pain is the universal currency of this planet. To think I would be any different is to be supremely naive or obnoxiously arrogant. I am but a speck of dust on a speck of dust whirling around larger balls of dust in a space so large we aren’t sure if it’s getting bigger or smaller.


I have wrestled with where God fits into all this for as long as I’ve known Liam’s diagnosis and even further back with multiple miscarriages. I have been angry and petulant. I have had moments of clarity, too, and what I’ve come to believe is that I am so limited in my understanding of everything that I can’t possibly know what is actually good or bad for me. But, God, who lives outside of time and who can see my beginning and my end and everything in between all at once understands it perfectly. Don’t get me wrong- I’m no Ghandi or Mother Theresa- knowing that I don’t see the full picture does not make me a serene mystic instantly. At this stage, I’m barely a toddler who had a bright idea that one time.


Maybe what I think is good for Liam and for my family is not good and maybe what I think has been a terrible diagnosis for our son is not actually wholly bad. Let me explain:


A friend of my husband recently reached out to me to let me know she had decided to foster a baby with HLHS, in part because of watching us go through this process with Liam. We have been very open about the good and the bad and somehow our story gave her and her husband courage to say yes to a medically fragile little baby. Let me be clear, I don’t think we did anything special, except to be vulnerable in our suffering with a large audience. Yet somehow, God took all that pain and fear and turned it into boldness for someone else who has already changed the trajectory of a little boy’s life forever and whose sacrifice and example of servanthood will likely touch many others. And the ripple goes on and on. That is what makes this bearable- the knowledge that in the midst of terrible circumstances, good can grow and even thrive because God takes ugly, broken situations and redeems them beyond our comprehension and for purposes we may never know.


Right or wrong, I do not adhere to the idea that God ordains or chooses our suffering. I don’t ascribe to the idea that “everything happens for a reason.” I do believe what the enemy plans for evil, God turns to the good. And even though there has been great pain and heartache, there has also been personal good. I am a more empathetic person- more sensitive to the hurt in others and more compassionate, although I’m sure my husband would argue I still have a ways to go. Ironically, I am a less anxious person- much of what happens to me and my family is obviously so far beyond my control it makes little sense to worry about what will come next. Paradoxically, it has given me the freedom to savor every cuddle and special moment with my family, knowing viscerally how little time we have with one another.


It may also just be self-preservation (who wants to be unhappy all the time?), but I choose not to dwell in bitterness over Liam’s condition. And while there are very few benefits of being born with half a heart, I hope to teach my son as soon as he is able to understand what many are only just learning well into adulthood: that each day is a gift and the only control we have is in how we spend that time.

I am not a perfect example of any of these things. I stumble just as often, if not more, as I succeed. But the glimpses of peace get more frequent each day and I do hope, sometime in the future, peace will linger for longer than just a glimpse. 

And so, while none of are at the center of the universe, there is for me some comfort in knowing we are known. It comforts me to know God sees Liam and He sees our family. And knowing God can take the tragedy of a broken body and somehow make things better, potentially far beyond our own circumstances, gives me hope that all this suffering is not just a scream into the void.