Tag Archives: diagnosis

It was always good.

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?

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Baby Lucia and I on one of those early, perfect walks in the woods.  My photo.

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.

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Some 2017 smiles.  My photo.  Happy New Year!

 

 

A Lament of Modern Medicine

A week ago today, my husband, our daughter, and I spent the morning at a clinic appointment at the hospital.  This was a good hospital visit–the kind where it seemed like every doctor who came in the room wasn’t complimenting Lucia’s abilities or bemoaning her lack thereof but seeing how happy and comfortable the three of us were.  It felt like we and the doctors, we finally got each other, like so many of them were really seeing Lucia as more than X-rays and EEGs and milk scans and surgeries.

And then bam.  

The very next day we got a phone call that something was wrong on the X-ray and it all seemed to fall apart.  I began to scrutinize what more I could have done for Lucia along the way as a parent, I began to feel the weight of failure, the pain, cruelty, and fatigue of hearing so very, very often that there’s something “wrong” with your child.

In my classes, as an anthropologist, I often seek to make students aware of what I call the “cult of medicine,” the fact that too many of us actually seem to worship and adhere to medical wisdom above all else, and if we let it, it and its seemingly endless cures and technologies and surgeries, will certainly rule our lives but it may not satisfy us.

Don’t get me wrong, I’m not against science or medicine.  I love me some doctors, especially those who have helped us make sense of which interventions are necessary and when we can just let Lucia be.  In fact, on Thursday we’d just said goodbye to a doctor who looked me in the eye the first day Lucia received an abnormal EEG and told me, “No matter what happens today, you’re still taking home the same baby you came with.  Nothing changes today.”  I instantly sigh and choke up every time I repeat that phrase to myself.

Yes, we said goodbye to a good one on Thursday, and I know all these things about medicine and Lucia, which is why I was so beat down, so frustrated that I let myself doubt it all.  In the face of yet another diagnosis, another medical power play, another anonymous phone call about something that was wrong with Lucia, I let myself imagine that things had actually changed.

But they hadn’t really.

Back home and even in the doctors office, it seemed the subject at hand was blissfully unaware that her future was being talked about in X-rays and injections and surgeries.  In fact, she even flashed a few smiles, last night she giggled without descending into crying (a new feat!).  In the midst of the medical mire, these things heal me–to know that my baby is still the same baby I birthed, I’ve known, I will know.  Nothing can change that.

But this life we live is a balancing act that often feels lonely and challenging and impossible and weary.  Every decision we make forecloses or necessitates another; we fumble, we flail, we debate, we fear, and above all, we love our daughter so fiercely that it all really hurts.

My husband and I have been speaking in metaphors lately because prose just doesn’t seem to do it.  So perhaps one more if you will: it’s like our family is on a little boat wading through the great expanse of medicine, and for a moment, we were a bit off course.  But medicine can be really great and grand if you keep your little rudder about you, which keeps your ship balanced and unchanged.

And so we will go on.  I will go on.  In fact, I will drive down to the hospital again this morning, but hopefully bolstered by my rudder, my faith, and that little posse of people that get me and my family who are adrift in this medical world.

I will go on picking up the pieces…but it is not easy living in a world that parses and prods and makes knowledge in bits and parts of your kid.  It’s not easy pushing against the endless barrage of rejection and criticism and diagnosis that medicine provides when you’re in search of genuine connection, communication, and life well lived.  It’s not easy to keep my wits about me in this world that can only seem to find faults with this beautiful little girl I was so blessed to help create.

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Our little tribe.  My photo.