A few months ago my husband said something to somebody about relishing the times when Lucia was a little baby (even though she was screaming all the time), because they were lovely and quaint and we’ll never get them back.
I remember so vividly how I just looked at him like he was an alien when he said that, because I couldn’t have felt more differently.
But I think I finally know what he meant.
I’m not sure, but I think there might be some great misnomer out there that life with children with special needs is abominably hard and painful all the time rather than also delightful and sweet and radiant and good.
Like one might assume that being in the hospital all the time sucks, and it really, really does, but then again, it also creates these long stints where we get this built-in family time and we really talk to each other and love and care for each other. Our memories might be punctuated by hospital stays, but they’re also punctuated by moments we got to know our kid better and our love for her became fiercer.
Or what about the moments in between the screaming Lucia did as a newborn when she collapsed into our chests or fell asleep with her head in our hands? Or how even though feeding her seemed to be practically killing her, walks in the fresh air were a balm to her soul?
I think what my husband realized even more than me is that the hard months that came very quickly after Lucia’s birth, the challenging diagnosis, and all the hospital stays can’t, don’t, and won’t crowd out the truth or mar the delight we have in her and the fondness with which we always think on her and the family she has made us.
There can be, and there is in life, so much that is distinctly and perfectly good even when it’s hard and rotten and difficult.
This year when I looked back to my very first post of 2016, when I started sharing Lucia’s journey and ours alongside hers, I was struck by the words I used to describe it all:
“My husband and I have become parents to a precious child with profound special needs. It has changed and will change our life forever. And it is good.”
It is good. It has always been good.
There was the truth right there, writ all over my announcement to the world of who Lucia is and how our life has been and will be with her. Do I often wish that we could heal her wounds swiftly and eliminate her pain? Of course! Do I pain to see her struggle to do simple things and sometimes just survive? Why yes. Do we all not know what to make of some of these challenges and decisions sometimes? Precisely.
But does God, in all of his infinite wisdom find her so perfect and so good that there’s not a question in my mind that we are distinctly and deeply blessed? Definitely.
“It was good,” God said when God made all of creation. And he meant it. Though life may be flawed and time may bring wounds and pain and hardship, all goodness is transcendent, true, and from God.
And I am deeply thankful to see and know Lucia in all her goodness, one day at a time.