Tag Archives: childhood disease

Looks Can Be Deceiving

There isn’t much you can say about a person who lived only three months, as our youngest two children did.  We will never know if our little ones were funny, or shy, or adventurous.  We have no idea if they would have inherited Brad’s sports genes or mine, my artistic eye or Brad’s not-s0-great eyes.  There is one thing that anyone who knew them can attest to, however.  They were stinkin’ cute.  Objectively.

This was one of the strange paradoxes we lived with in the case of both babies.  With Peter it was shocking, as he looked like a totally normal child up until the moment we saw him all wired up in the PICU.  Who could have known, with their naked eye, that this little cutie was fussy not due to a long car ride, or reflux, or colic, but because the cells in his liver did not make enough energy to keep it functioning.  As we sat in the waiting room of the ER at Children’s, there was nothing of our son’s outer appearance that would lead us to believe that he would be dead in five days. 

Since we knew that it was a possibility that Gianna might inherit the same Mitochondrial disorder that took her brother, we were much more intently focused on her from her conception.  We knew much earlier that we could not go by looks, so testing was done shortly after birth and then at two months.  This lead to a very different, but equally odd, experience of appearance.  She was absolutely beautiful (objectively, of course!), and again, did not look sick.  There were times when I enjoyed this immensely.  During our first two admissions to the hospital, I routinely took her up to the cafeteria with me, or to the family lounge and even once to Mass.  No one could tell she was the patient.  While we were home, I got complements about her from strangers who had no idea that a risky liver transplant was the only hope of her living to four months old.  I enjoyed the break, the opportunity to pretend for a moment that we were a normal family who worried about nothing more than getting a little more sleep.  I also think her cuteness scored her some extra points with the hospital staff.  Not that these dedicated professionals would ever mistreat an ugly baby, but several did comment that she was much cuter than the average critically ill child, especially on the floor we were on.  I took motherly pride in the way they doted over her cute outfits or lingered in our room to hold her.

Gianna’s cuteness also made for some painfully ironic (and often awkward) moments.  During her first hospitalization, when we were slowly trying to come to terms with her likely prognosis, a nurse’s aide came into our room to find me weeping.  Supposing that I was a hormonally unstable, overwhelmed new mother, she said, “new babies are really hard, aren’t they?”  A perfectly compassionate thing to say! “No, she’s dying”, was all I could get out. 

Two days before her death, on her way to the OR to get a pic line placed for easier blood draws, a doctor we didn’t know got on the elevator with us.  “Well, now there’s a healthy one!” he said.  The nurse and I looked at each other uncomfortably as she replied, “No, she’s pretty sick”.  Other times, it was not the awkward one-liners that got to me, but the flip side of what I mentioned before.  I could only pretend so long that Gianna was fine, because she wasn’t.  Once, before our bad news was actually confirmed, I was grocery shopping with both kids, and could barely make it to the car before beginning to cry.  The juxataposition between what appeared to be true and what actually was weighed on me in a deep, surreal way.

This line of thinking was brought up to me at a recent benefit banquet I attended for Prenatal Partners for Life*.  The priest who gave the closing comments remarked that we all were born with a terminal illness: Original sin.  The sick, he said, serve us all well as a reminder of this fact.  His reflection made me think.  In the spiritual order of things, many of us are my Peter and Gianna.  We look fine on the outside, but on the inside we are dying.  Sometimes, the comfort that comes with financial stability, good health, talent and long life can be dangerous to our salvation since they can lull us into a false sense of self confidence.  Why would we have thought to ask our doctor to run a liver function test on our two month old son? All signs pointed to him being perfectly healthy.  In the same way, many people never think to accuse themselves of sin because they seem to have everything under control.  It just doesn’t occur to them.  And as we learned in Peter’s case, undiagnosed illnesses can still kill you even if you don’t look sick.  So it can be in the spiritual life, but for eternity.

With Gianna, we knew not to trust appearances.  We looked inside, and found that something was indeed wrong.  For Gianna, knowing early that she was sick did not end up saving her life.  This is also true spiritually of those who recognize their own sin but choose to cling to it instead of bringing it to Jesus for forgiveness and healing.  Although it sounds like a bizarre category of people, they do exist.  They are those who despair at their own weakness, or who set out to fix it themselves. 

 Gianna’s doctors did their best to try and save her, and we did too.  We gave her all kinds of nasty meds, drew blood from veins that did not want to give it, and did not give up on her last option (transplant) until it was painfully evident that she could not survive the operation.  We availed her of all modern medicine had to offer, and modern medicine failed us.  Gratefully, this is where my analogy breaks down.  When we bring our sinfulness to Jesus, He never fails us.  So many people offered to get tested to be liver donors for Gia, because they were willing to sacrifice even part of their own bodies to save her.  That is precisely what Jesus did for us.  Our hearts were so badly hardened and diseased by sin that we were wasting away.  We needed a heart transplant, and that is what He gave us: His own heart.  Of course, that transplant cost Him His life. 

So next time we pass an elderly lady with oxygen, or a paralyzed man in a wheelchair, or a child with Down’s Syndrome, let’s thank God for the gift of those lives.  More than that, let’s honor those beautiful souls by taking stock of our own.  When we entrust our spiritual maladies to the Divine Physician, He never fails to cure us.

* For more info about Prenatal Partners for Life, an amazing organization helping parents of children with adverse prenatal diagnosis, infant death and disabled children, check out: www.prenatalpartnersforlife.org

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The Waiting Place

 waiting 1

You can get so confused that you’ll start in to race

down long wiggled roads at a break-necking pace

and grind on for miles across weirdish wild space,

headed, I fear, toward a most useless place. The Waiting Place…

…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go

or the mail to come, or the rain to go or the phone to ring, or the snow to snow

or waiting around for a Yes or a No or waiting for their hair to grow.

Everyone is just waiting.  (Dr. Seuss, Oh! The Places You’ll Go)

 This time last year we were up north previewing the camp we and other area youth ministers had rented for our Junior High students in June.  The day was unseasonable cool and I remember wondering how our kids, in just four short weeks could ever dream of swimming in the lake.  Isaac was with friends, and we brought Gianna along.  In typical fashion, I had forgotten to bring the Bjorn, so Brad and I took turns holding her as we walked through cabins and woods.  Brad spent a lot of the day on the cell phone, with spotty coverage, arguing back and forth with Children’s Hospital staff in St. Paul.  We had recently gotten Gianna tested for some elements in her blood that would indicate that she had the same mitochondrial disorder that took her brother.  We were anxious to hear the news that would confirm what we’d come to accept: she was a healthy little girl and we had nothing more to worry about than beating away her would-be suitors.  The mix-up between clinic staffs was finally cleared up and a call from our doctor came in right as we approached the Target parking lot where our carpool had met.  The numbers were not good.

We entered “The Waiting Place” that day, as further results and retests and appointments were scheduled.  Was it a fluke? This is a hard test to get right.  And once the worst was confirmed, over Memorial Day weekend, we continued to wait. For a liver, or a miracle, or for our little girl to join her brother in heaven. 

I feel like I’ve spent much of my life in The Waiting Place.  As the youngest, I waited through much of my childhood to be as big as my sister.  I waited for college, for summer vacation, for NET, to get married, to have kids, for those kids to finally be born… there always seemed to be something new and exciting to look forward to.  I admit I spent more time than necessary going over and over how things might turn out, sometimes to the point of restlessness.  Gianna taught me a lot about waiting while savoring the present moment.  From the first weeks after her conception, we treasured her.  But especially after her sickness was confirmed, we had no choice but to live only in each day.  I look back and marvel at the fact that the end of May to mid July is only about 6 weeks.  Holy cow, it seemed like an eternity.  Partially because of the grief-and-hospital-induced trancelike fog in which we were living, but partially because we filled up each hour not with the past or future, but with the present moment.  As hard as it was, I will look back on that month and a half as one of the most precious of my life.

Most of our life’s waiting will (gratefully) not be as dramatic as ours was in May 2008.  But it can all be as full of the present moment, and all be as fruitful.  Jesus was 30 when He started His ministry, which lasted only 3 years.  Do you realize what that means? He waited for 30 years! He and Mary worked, took care of their cave, worshipped… day in and day out for thirty long years.  You can bet (being as they were both sinless and Jesus was God and all) that not a moment of that time was wasted.  Jesus, through His humanity in those hidden years, sanctified waiting. 

And so, as we enter a non-life threatening, but still anxiety-inducing (job-searching) waiting this May, I need to continue to remind myself that this is not a “most useless place”.  This is right where God wants our family right now.  And if I let it, with the help of grace, it can be a holy time, sanctifying us as we wait in joyful hope. 

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My Mormon Conversion Part II: Suffering

See the last post for the disclaimer.  In this mini-disclaimer I have to add that I am jealous of the little laminated pictures of Calvin (of Hobbes fame) that he used to explain the LDS take on Salvation History. I may steal and adapt the concept for future use.

So this is the Big Picture, according to the Church of Jesus Christ of Latter Day Saints, as I understand it:

God the embodied Father, and his son Jesus created a whole lot of human souls.  But since the Father wanted them to learn and grow and experience things (like he did), he sent them to earth. The first to cross the veil and receive bodies were Adam and Eve.  God told them not to eat the fruit, but he really wanted them to, so that they could experience joy and sorrow, and all ranges of emotion.  So, they did eat it and now get to experience all those things: like sickness, death, hard work, etc.  Then God sent Jesus, who atoned for our sins on the Cross.  So now, when we die, our souls wait in a place whose name alludes me.  But while we are in the Waiting Place, we can still choose for or against God.  Finally, there will be a Judgement at the Second Coming and based on that we will be sent to one of three kingdoms, the highest of which is a place where you are yourself a god and spend eternity with your family.

So, for today I will look just at pre existent souls and Eden, in light of my own experience.  I know there is an undercurrent of the belief in pre-existent souls in popular culture, usually manifesting itself in a sentiment like, “I’m so glad you chose me to be your mom.”  This is flawed on many levels.  First, why would a loving God send souls completely in his presence and basking in the Beatific Vision to Earth??  Why would you want to leave heaven to go “learn and grow”? Second, what good would it be for God to create children who die in the womb, or ones who die as infants? They didn’t get to “learn and grow”.  That would kind of make their lives a mistake.  But if we look at each conception as the creation of a new human life- body and soul- then, yes, it makes at least some kind of sense.  That person now exists for eternity. 

Plus, if we were initially souls, and just dropped into our bodies to experience things, why is the dropping out of them so traumatic? Because we are body-and-soul!  The two together make up a human! They were never meant to be torn apart!

Which leads me to Eden.  I clarified with them the part about God really secretly wanting Adam and Eve to eat the fruit, because it sounded so bizarre to me.  Would any of you parents tell your kid not to do something that  you knew they’d do just so you could punish them? That would be a sick and vindictive God! Further, the idea that the suffering we undergo in this life is God’s way of letting us “experience things,” or “learn and grow”? Now, I will be the first to admit that tremendous sorrow has amazing fruit.  But I take great comfort in the fact that God never meant for death or sickness to enter the world.  I can say with confidence to any suffering parent, “God never wanted your baby to die. That’s not how it was supposed to be.”  Yes, he knew we would fall.  Yes, his solution to the problem of sin is so much better than if we had never sinned.  But make no mistake: God is not pleased with sin and its effects.  That’s why he went so far as to send us himself-his only Son- to fix the problem.

If the effects of sin are just “learning and growing”, then why do we need a Savior? Why would God need to redeem us from something that he intended us to have in the first place? It just doesn’t make sense.

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Lessons learned from St. Gianna (Molla)

gianna_sainthoodApril 28th Feast Day of St. Gianna Molla
Our Gianna’s first hospitalization, even though it was her healthiest, was by far the hardest for me.  During later ones we would have the slim hope of transplant to focus on, but during this one, as they tested the heck out of our little girl, we were coming to grips with the truth. Inside what looked like a normal baby was a liver full of cells that couldn’t make enough energy to keep her alive.  Our baby was going to die. Again.

St. Gianna Molla kept me company during those few days, as I had just received a biography of her for Mother’s Day, a week or two before.  There were two things that stood out to me in this particular account of her life. 

The first was of the very real pain her martyrdom caused her family.  It is easy to gloss over this in saints from eras long past, or for priests or religious even.  But here was Pietro Molla, Gianna’s beloved husband, sharing about how hard it was for him to raise their four children alone.  How hard he tried to protect his kids from the limelight surrounding Gianna’s growing popularity and her cause for canonization.  How awkward it was for him to allow his personal love letters to be published all over the world.  It was hard for him to share his Gianna with the Church, when he would much rather her have just been his unspectacular, non-miracle-working, grocery-shopping, diaper- changing wife!  Yet, he knew she was not his to keep to himself, and so he allowed the process to continue.  In 2004, He and their three surviving children (their daughter Mariolina died a few years after Gianna did) were at her canonization ceremony. Wow.

Our Gianna is also a saint, and I can share some of Pietro’s sentiments: saint-making is tough!  Especially at that moment in time, I did not want to share my Gianna with the Church.  I did not want her to intercede for people or inspire them.  I just wanted her to keep making diapers, and spitting up and wearing cute baby clothes, just like any other normal baby who lives to see their first birthday.   I love St. Gianna Molla, and I am grateful for what she did and who she now is.  But dang, she reminds me how real saints are, and that even when God is doing great and wonderful things, it still sometimes hurts!!

The second thing that struck me from that read of Gianna’s life was her unfailing trust in Providence.  Can you imagine having to decide between giving your baby life and giving her a mother? St. Gianna didn’t want to die. She loved life, and especially her family.  But she trusted God: that He was good as He claimed to be, and that He would take care of her family in her absence.  Pietro talks in that book about the times that were darkest for him and the kids and how he could feel Gianna’s tangible presence.  God did come through… through Gianna. 

And this is where we are left today.  Especially as we navigate the waters of a job search, and ponder the future of our family, we need to hold fast to what St. Gianna taught us: to trust in God’s Providence.  How grateful I am today for both of my St. Gianna’s!

St. Gianna Molla, pray for us!
St. Gianna Marie, pray for us!

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Elephant in the Living Room

FRIDAY, OCTOBER 10, 2008 07:42 PM, CDT

Many people, when touched by the illness of a loved one, will take up the cause of fighting that illness. This is right and good. We should fight terrible diseases, especially ones that take the lives of children. Brad and I certainly support efforts of researchers seeking to know more about mitochondrial disease with a future hope of some treatment. But we haven’t felt particularly inclined to take this up as a cause.

This is why: Four thousand children die every day in our country of something totally preventable. Each day that my child was in the hospital or clinic, with a team of doctors working their hardest to beat an unbeatable disease, 39 healthy Minnesotan kids died at the hands of a different set of doctors across town. I am speaking of course of abortion.

My children had bad genes, and despite medicine’s best efforts, they died. But at least while they lived, they were respected, loved and treated with dignity. When they died, people cried for them. They had beautiful funerals. People leave them flowers at the cemetery. Their short lives were lived in love. Babies who die from abortion die badly. They are treated as medical waste. People pretend to forget they ever existed. This is an injustice that cries out to heaven.

But children who die from abortion are not its only victims. Losing a baby to an untreatable disease hurts. But Brad and I have the support of our families, friends and Church. People ask us how we are doing. They sent cards (hundreds of them!!) and flowers, and meals. Women and men who lose their babies to abortion do not have this support. Often their grief goes totally unrecognized and unaffirmed. One post-abortive woman I know was told by her psychologist to ‘just get over it already’. The choice that was supposed to be so freeing, these women tell me, ends up imprisoning them in a spiral of grief, anger, shame and hurt. Let’s not be naive: every abortion claims AT LEAST two victims (though we can’t forget dad, grandma, the friend that gave the ride, the abortionist…).

Abortion is the elephant in the living room of American society. No one likes to talk about it. It makes everyone squirm. But the fact remains that in the three decades that it has been legal, it has killed millions of children and wounded millions of parents. This cannot be allowed to continue. Over 170 cities in 45 states are currently participating in 40 Days for Life- an interfaith effort to end abortion through prayer, fasting and presence. If your city is hosting one, I encourage you to participate (St. John’s is hosting October 25th at Regions). If not, there are hundreds of different ways to take a stand for life. Some defend it in our courts or legislature, others on the sidewalk, others through education, others at Crisis Pregnancy centers, others through adoption agencies, others in post-abortion healing ministries. And all of us have a chance to support it at the ballot box.

Let’s work toward cures for childhood diseases, but in doing so, let’s also try our best to also save the lives of all those kids who are not sick.

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