Life is Worth Living

Update From Rochester

I want to begin by soberly thanking every one of you who has offered a prayer or a sacrifice for Paul and our family.  Again we are deeply thankful for all the kind words, meals, money, and most especially, the prayers and sacrifices.  God works in mysterious ways, and please know that we feel His love through you all.

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Unfortunately after another shunt revision surgery last Friday, Paul is still hurting.  His head is aching, in an ebb and flow manner, and he isn’t eating well.

Because we were able to secure a house within walking distance of the hospital, however, Paul was allowed to join us.  This has been a great blessing for our family.  It cheers him to be around all his brothers and sisters.

Yesterday we took the whole family and attended a Latin Mass at the shrine in La Crosse, WI, dedicated to Our Lady of Guadalupe.  During his brief homily the priest paused and said quietly, “One of two things happen, when one begins to pray the rosary every day.  He either quits sinning, or he quits praying the rosary.”

Put so starkly, those words gave me great hope.

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Interior of the Church

Incidentally, we were able to make this pilgrimage to the Shrine through the generosity of some friends.  But also, on a practical level, we were able to take Paul because the Shrine offers rides on a golf cart to those individuals who are unable to make the ten minute hike up the wooded hill to the church.  Our Lady was surely interceding for us!

We prayed for Paul, but also for a friend of ours suffering from cancer and for the Amazon Synod.  We lit a candle in this small chapel on the hillside:

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It was a beautiful day, even if our hearts were aching for our son.

Tomorrow Paul has more appointments, to determine what should or should not be done.  Every day we live in uncertainty as to whether he’ll get better or not.  It is agonizing.  But we continue to trust in God.  We want to be loyal to His will, no matter the cost.

Tomorrow is also Paul’s 11th birthday, which he of course shares with his twin brother, Michael.  (I wrote about their birth HERE.)

But today…today we thank God for his most lovely and fair mother.  Our Lady of the Rosary, pray for us!

 

Life is Worth Living

A Quick Note on Paul

Dear Readers,

Paul is unexpectedly back in the hospital.  (For those of you who are new, click HERE for more details and pictures.)

We are choked with grief, as we watch him suffer.  He’s been vomiting for two days now, as the doctors are deciding what to do.  As it is, they are going to tap his spinal shunt, to see if fluid will come out.  If no fluid comes out, then Paul will have another shunt revision surgery.  If fluid does come out, then that means the shunt system is “working,” but it’s not helping him.  In this case, he’ll have a cranial reconstruction surgery on Monday or Tuesday.  This is where they cut and peel back his skin from ear to ear, take apart his skull, and put it back together, allowing for more space.  (St. Jude, pray for us.)

In the meantime, his doctors will do everything they can to get him through the weekend.  They can go in, open up his cyst, and drain fluid to release pressure, but again, they won’t do the cranial reconstruction surgery until Monday or Tuesday because it requires more doctors and planning.  It is a complex surgery, to say the least.

We should know later tonight which surgery to expect.

This is very painful for all of us.  It’s heart-rending.

Just now, we’ve booked a house within walking distance of the hospital, and the children and I are leaving tomorrow morning to join my husband and Paul.  Our whole family will be together.

Please remember us in your prayers.

P.S.  A friend sent this to me.  I feel it in my heart.  Thank you, dear friend.

 

Life is Worth Living

Cardinal Sarah’s Latest & a Note on Paul

I just received my copy of Cardinal Sarah’s latest book in the mail yesterday.

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Robert Cardinal Sarah’s The Day Is Now Far Spent

I can’t wait to get at it.  Fr. Z has pulled some tantalizing quotations HERE.  When I get a chance to read it, I’ll be sure to let you know my thoughts.  I have no doubt that this will be an excellent read.  His other two books were.

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Have you read this one yet?
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Or how about this one?  No?  You’re really, really missing out.

I did notice that Sarah’s new book begins with a Part 1 titled “Spiritual and Religious Collapse.”  He quotes Luke 18:8, “When the Son of man comes, will he find faith on earth?”

Indeed, will he?

Paul is Recovering

We are now home again after two more surgeries and a week-long stay at the hospital in Rochester.  Paul’s doctors are now experimenting with two shunts.  He’s got one that sits in the arachnoid cyst on his brain, and the other is in his spine.  The hope is that these two shunts will better regulate the fluid in his brain.

We hope this works, as it’s a difficult strain on our family to be separated so much–to say nothing of watching Paul tremble in pain during periods of incredibly high levels of pressure.  I really cannot describe the agony one experiences just watching him.  I have a new respect for Mary at the foot of the Cross.

In any case, thank you all for the prayers.  Truly, we are grateful.

Life is Worth Living

Paul’s Suffering: Updated

Dear Readers,

We cannot thank you enough for your kind words of encouragement and more importantly, for your prayers.

We have good news today.

After 5 surgeries, and ever since late last Thursday, the Feast of the Assumption, Paul has steadily been getting better.  His heart rate and breathing are normal.  He hasn’t vomited.  He hasn’t had any seizures.  His head does not hurt very much.  He sat up, and he smiled.  He ate and is gaining weight.  He even went for a little walk around the ICU.

And he lost a tooth.

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See that gaping hole on the left?

A good friend of ours drove 8 hours to bring Paul’s two brothers to see him yesterday.  This was a great boost to his morale, which had been waning after 3 and a half weeks in the hospital.

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Here they are, eating dinner together last night with another friend of theirs.
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Paul’s twin, Michael, is in the upper left.  Johnny, Paul’s younger brother is on the right.

If he continues to feel well, the doctors will remove the tubing in his spine, and he may get to come home sometime later this week.  We certainly hope this will be the case.

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Tubing in his spine, which measures pressure levels in the brain.

Again, we cannot thank you enough for praying for him and for our family.  This has been the most difficult trial we’ve ever experienced.

Nevertheless we feel God’s love, and we thank Him.

 

 

Life is Worth Living

Paul’s Suffering

Well, I am back at it, after taking a 3 week break.  During this break I had intended to vacation with my family, attend my brother’s wedding, and enjoy some carefree timelessness.

But nothing has gone as expected.

Rather, two days before we were to leave for South Dakota, my husband and I had to rush our son, Paul, to our local ER.  His incision from last May’s surgery had become infected.  And before we knew it, he and my husband were driving straight through the night to St. Mary’s Hospital in Rochester.

And thus began 3 weeks of the most excruciating suffering I’ve ever known–watching a child suffer.

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Paul Endures Surgery After Surgery

During these last 3 weeks, Paul has undergone surgery after surgery, with almost everything going wrong that could go wrong.  His shunt tubing became blocked.  His heart rate kept dropping dangerously low.  He quit breathing for 10-15 seconds at a time and would struggle for breath, for hours upon hours.  Blood leaked into his brain.  One shunt malfunctioned.  Another shunt slipped out of place.  His left ventricle collapsed.  He hasn’t eaten for days upon days and is losing weight.  He is suffering seizures.  And then there’s all the vomiting.

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All of these things have been happening in addition to the most excruciating head pain.  And we sit helplessly by him and watch and pray.  I’ll never forget the terrible day and night I had to watch his heart rate slow, his breathing cease, and then the trembling of his body to grasp a breath.  It was terrible.

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And it’s still going on.  I beg of you, dear Readers, to remember him in your prayers.  But remember the other children too.  They are suffering in a different way.  They wonder, where is Paul?  Why can’t Paul just come home?  Why can’t the doctors fix him?

We don’t know the answers.  We only know that for some mysterious reason God is allowing this suffering, and we can choose to accept it, or we can drive ourselves mad with endless, unanswerable questions and blame God for ruining a perfectly healthy little boy.

But we choose to trust in Him.  He who is the beginning and the end of all things.  He who created the heavens and the earth.  He who loves us so much that He died for us.  And His name is Jesus.  And all knees on earth and in heaven will bend to Him at the end of time.  May His kingship reign forever and ever.

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Paul Prayer Intentions

In the midst of his suffering, Paul has been praying.  He has been asking Mary to hold him.  And he has been praying for Ex-Cardinal McCarrick and for my cousin, Tony.  Up until today, Tony had been in psyche ward of a hospital.  All within a few years, his brother died in a motorcycle accident, his wife died from cancer, and his father just died last week.

Tony was released this morning.  He drove to his father’s house and killed himself.

Please, Jesus, You have a most merciful heart.  We pray, that in those briefest of moments before his death, Tony in his agony turned towards You.

 

 

Motherhood & Parenting

Mom Hours: My Son Suffers Migraines

I’ve been putting in a lot of Mom Hours lately.  You know, days when one doesn’t even get a solid fifteen minute break.  (Not to say anything of the night.)

Of course it’s been busier than usual with the selling of our home and the purchasing of another, but it’s more than that.  It’s the start of a new school year with many new elements thrown in.  For example, two of our children are now attending a brick and mortar school, which requires more driving.  And I am still homeschooling three others with a Toddler and a Baby bouncing along in the background.

And somebody has to make sure there’s food on the table.

Now I like doing all these things.  But I don’t like that my 9-year-old son suffers from migraines.  This throws me for a loop every time.  I can always sense when one is coming on because I find him sitting on the couch, not moving.  Then, there’s a glassy look in his eyes.  Then, he doesn’t want to eat, which is a constant worry for me because he only weighs 60 pounds to begin with.  And finally, within an hour of that, it’s an all-out migraine.

His migraines last anywhere from 4-10 hours.  And they almost always end in vomiting.  Last week, as he was throwing up in the toilet, I was moved to tears.  He was so weak that when he finished, he simply slumped to the floor and lay there.

I felt helpless.  I finished scrubbing the toilet and turned to him and said, “I’m so sorry that you’re hurting.  I wish I could take it away.”  Then he got up and looked at me with his big, sunken-in eyes and said quietly, “Mom, you are not meant to suffer migraines.  I am.  It is God’s will.”  And he slowly walked back to the couch.

It is God’s will.

He’s right, and I have a lot to learn from him.  Even while he was clutching the toilet, he was praying for my cousin who suffers from alcoholism.  Surely God hears the prayers of the little suffering children.  It was painfully beautiful to witness.

If only I would remember to pray during my hardships – my sleepless nights of insomnia, for example.  For the Office of Compline reminds me:

In the silent hours of the night, bless the Lord.

And again in Psalm 91,

He who dwells in the shelter of the Most High, who abides in the shadow of the Almighty, will say to the Lord, “My refuge and my fortress; my God, in whom I trust.”

My God, in whom I trust.  To whom would I rather go?

It is God’s will that my son suffers migraines, and it is my lot to care for him.  It is also God’s will that I suffer from insomnia.  And yes, it means putting in long Mom Hours.  This is no 9-5 vocation after all, and it requires a lot of sacrifice and prayer.