Embrace

Carpe Diem.  Seize the day.

During this most recent hospital admission, I made a decision.  I realized there was more of Wylie to embrace, so I did.  I embraced the more of her that was uncovered.

I am aware that she will require more medical intervention than our family has known.  I anticipate procedures, tests, medications, and appointments.  Then came Monday night.  We had been home for exactly two weeks--a wonderful two weeks.  Yet, we had to go back.  We had to drive back to the same ED that opened the door to her ten-week hospitalization.

Honestly, I was sad and tempted to feel a failure.  We went, though, and were greeted by friendly, helpful doctors, nurses, and therapists who did their best for Wylie again.  I hoped maybe they would send us home, but we didn't go home.  We went back upstairs to the other side of the PICU.  Sweet friends there apologized that we had to come and welcomed us, too.

Wylie's palliative care doctor reassured us the next day that her providers also expect admissions to "fine-tune" her care.  I liked hearing that.  I witnessed the truth of her statement.  While Wylie was there, they stopped two of her medicines.  She made the transition back to breastmilk.  She has a new weaning plan for another two medicines.  It was helpful and redemptive.

Before all of this materialized, though.  I realized my opportunity to choose my attitude.  I could drag in and out of that parking garage.  I could worry and fret.  I could become anxious for the children at home and what they are experiencing or perhaps losing.  I could project into the future how many more admissions we may have and how many could be as harrowing as ones we have already endured.  I could be jealous of parents with "healthy, normal" newborns.  Easily.  I could easily do those things.

On the fringe of this attitude choice, a startling question interrupted and weighed on my heart.  Will we help Wylie live for her to just inevitably die an early, painful death?  Herein lies the more of Wylie I can choose again to embrace.

My answer is that I'm all in for Wylie.  I'm willing to make a thousand trips to the hospital.  I am willing to help her siblings cope with separation and disruptions in our home.  I'm committed to teamwork with Gavin through whatever circumstances we find in the future.  It's firmly decided--a done deal.

In the meantime, we are not at the hospital.  We are home.  Right now, our sweet Wylie is napping on her changing pad, a beautiful color pink with her newly-grown, fuzzy hair adorning her precious noggin.  There is diaper-changing, bathing, cuddling, stroller-walking, singing, reading, facing-making, embracing to do.

Carpe Diem.

Miracle, Precious, Marvelous

"Miracle, Precious, Marvelous" These three words were harkened over Wylie's crib more times than I can count.  A nurse technician greeted the little babe with these descriptors every time she began her shift.  This special lady was so bold in her hope, fierce in her love.  Her courage was contagious.  One of these titles for Wylie has left me at a loss.

Miracle.  What do we do with our miracle?  This week I've thought of Lazarus, Tabitha, the beggar in Acts 3, and the 10 lepers.  The first two were raised from the dead.  The others were healed in a way that profoundly changed their entire lives.  I was washing dishes and thinking about how Lazarus would have gone back to eating and sleeping.  I was making my Kroger order and imagining how Tabitha would have walked to the market and spent time with the ladies that wept over her dead body.  Wylie can be outside and in the bathtub!  The beggar could move!  Where did he go first?  Those lepers...only one came back to say thank you.

When these miracles occurred in the Bible, everyone was astounded and amazed.  Some people decided to follow Jesus afterward.  Some were wrought with fear and jealousy--their power and control threatened.  I've noticed my response over and over is gratitude and awe.

Why?  Boldness.  The definition of boldness is "willingness to take risks and act innovatively; confidence or courage."  We have seen boldness.  Oh, little Wylie, if anybody could cause someone to shrink back, it may be her.  When she was sick, she got really sick.  Three holes in her lung, heart failure, arrhythmia, chylothorax, pericardial effusions, a blood infection.  The challenges literally overlapped one another, wreaking havoc in her fragile body.

Heroic people put their hands on her.  They delicately placed tubes, and catheters, and stitched, and positioned, and used every tool at their disposal to help her live.  Her providers worked through shifts without breaks to attend to Wylie's demanding condition.  These normal people with dreams, hopes, and challenges of their own, showed up and gave her everything they could.  They did for us, too.  There were hugs, smiles, tears, plans, revisions of plans, and creative problem-solving like you would not believe!  They were so bold to give her a chance to heal, so bold to imagine her going home.  

Outside the hospital, people were bold, too.  Bringing food, bringing themselves, bringing our children to classes and activities, people risked coming near in our grief, our potential loss, our pain or messiness.  Courageous friends and family dared to hope with us and for us.  Every comment, every note, every card, every silent or spoken prayer uttered on our behalf was a bold assertion that love was worthwhile. 

The morning we went home, I woke pretty early and went into Wylie's room from the sleep room which is situated across the hall from the PIC Unit.  I was able to hold her and thanked God for her life and for her healing.  He had kept so many promises during our stay there.  "I will never leave you or forsake you."  He didn't.  "I am near to the brokenhearted."  He was.  No matter the outcome during this admittance, we had experienced a miracle of our Triune God being with us and for us!  His presence was everything!

After thanking God, I was moved to thank her, too.  I wept over my four-month-old daughter's courage.  "Thank you, Wylie, for never giving up.  Thank you for giving us the chance to be with you and know you better.  Thank you for coming home with us."

You are, "miracle, precious, marvelous."