Decisions, Decisions

In the time that lapsed since my last post, our life has changed.  For one thing, we've recovered from the fear of the unknown and transitioned into survival mode.  I have spent countless hours coordinating with nurses, schedulers, surgeons, specialists, work, school, etc...  Ari had his cecostomy button changed in the endoscopy clinic, my dad had a hip replacement, and I transitioned to part-time employment in anticipation of the challenges ahead.

It's exhausting to even think about it.

Larry and I are often asked "How do you do it?"  The answer is simple and with over 80% of all couples with a special needs child ending in divorce, it is also necessary.

Partnership.

This isn't a corny, marriage advise sort of answer.  It's reality.  Before we had to make decisions that affect so many lives, our marriage was fun, connected... easy.  Once we switch into this survival mode, we become business partners, scheduling and delegating to maximize our time like the most efficiently run organization.  We go days without seeing each other and the time we do get is spent reviewing what has happened, what needs to happen, and establishing a contingency plan.

We had just settled into our life- a new house, Ari in pre-k 2 days a week, Liv happy in school and loving cheer.  Larry and I finally had a chance to exhale and actually look at each other, taking in the enormity of the last 4 years.  "We made it." We would say with genuine smiles, settling into the comfort that comes with routine.  Seventeen years passed by in a flash, yet I have few memories of the time before we met.  When deep in love and planning a future together, no one says "We're going to make a child that has birth defects and requires us to test our resilience and love until we are worn to a breaking point...THEN we'll briefly recover and do it all again."  No... it's not a common conversation for young couples.

We scheduled the surgery for Ari to have a G-tube inserted again last Friday.  He wasn't eating much and we were concerned about his weight and energy.  He didn't look well and we wanted him to get the nutrition and strength he'll need for a major surgery.

Things changed when I received a surprise present from my closest Tri-Delt pledge sisters- a VitaMix blender/juicer.  The first day, I used it 7 times, amazed that I could make Ari high-calorie beverages and purees that included all of the fruits and vegetables he was never able to swallow.  Almost instantly, he perked up, asking for smoothies and drinking them with vigor.  I am so grateful to Julie, Julie, Stef, and Katie for this present.  Because of their generosity and Ari's willing to try new foods, we were able to cancel the G-tube surgery and pushed up the inevitable esophageal repair to February 13th.  This means canceling his spinal MRI again (which was supposed to be tomorrow), but we'll work it back in when we can.

THE PLAN

Ari will be cut along the same incision site as his miraculous esophageal "growth" surgery in 2010- front to back around the left side.  The ribs will be pulled apart to access the esophagus and his surgeon, Dr. Bleacher will make a vertical incision, then a horizontal closure, below the esophageal "shelf".  If all goes well, there will be no need for a complete revision, though that is still an option.  His hospital stay will be around a week.  His recovery at home will be much longer.

Larry and I will both be at the hospital on Monday.  Post-op, I will spend the week there.  Larry will come every night after work.  We will switch on Friday, with Larry taking the hospital shift and me spending the weekend with Liv at Cheer Sport in Atlanta.

During the week, Liv will stay with my parents (thank God they moved here!!) Monday through Friday with the exception of a special Valentine's Day dinner date with her daddy.  I'm going to miss her so much.

I received a call yesterday from the anestethia department needing to see Ari for a blood match.  I completely forgot that he has to have blood transfusions for his last two esophageal surgeries.  The very though makes me sick.  I'm frantically working with the Red Cross and Dr. Bleacher's office to see if I can donate my blood to him for a direct donation.  It's hard to coordinate because I have to give at a blood bank and they have to screen, label, and special deliver it in time for the surgery.  If we can't make it happen this morning it will be too late.  I'm praying we can coordinate this in time.

As I walked by Ari's room late last night, I was taken aback by the knot that formed in my stomach.  Walking into his room, I watched him sleep... so peaceful and sweet.  I leaned over, breathing in his breath as he exhaled, making him a part of me once again.  I prayed to God and to His Angels.

Be strong, Little Lion... be strong.


If you ever need a reminder of the true zest for life within Ari- click the link below.  I don't know what's funnier- Ari tap dancing in Topsiders or my mom's friend Mickey singing.

Ari "tap dancing"- Pure joy!!