The missing post...

It has been a week since Alli passed away.  In some ways it seems like an eternity and at the same time it feels like it was just yesterday.  So, what happened…

Last Wednesday morning began like many others.  My mom had traveled back to Detroit the day before and we were having a slow start.  Jason left early to drop off his car at the dealership and head downtown for a full day of meetings with a client from out of town.  I quickly got Samantha dressed for school, fed her breakfast, and put her and Josh in the car.  I remember her asking to run upstairs to tell Carol and Alli goodbye before she left for school.  I don't remember if I left her go or not.  Not important.  

After I dropped Samantha off at school I called the pharmacy to have one of Alli's prescriptions refilled.  Then I called Carol to let her know that I had a couple of errands to run, including the trip to the pharmacy, which was about 25 minutes from the house and to call me if she needed me to come home.  She assured me all was well at home and that she was about to give Alli her bath and breathing treatment.  I then proceeded to drop off the dry cleaning and take a box of clothes for Millie to the post office.  As I was leaving the post office I received the call from Carol telling me to come straight home, that Alli was requiring 3L of oxygen.  The drive home, which on a good day is approximately 12 minutes, felt like an eternity.  On my way I called Jason downtown to let him know what was going on and to keep his phone available in case I needed him.  I then called Carol back.  It seemed like forever before I arrived back home.

When I finally arrived back home around 9:30 it was clear that Alli was deteriorating quickly.  I called our hospice nurse who advised me to give Alli a small dose of morphine and that she would be at our house within the hour.  I called Jason back at the office to give him the update and let him know that he should come home.  I climbed in to bed with Alli and held her as we put her bipap mask back on and began the process of turning up the oxygen to try to get her oxygen sats back up.  The chaplain prayed with me and helped me put some of our Lourdes water on Alli's lips.  By the time Jason came home, she was sitting on 5L of oxygen through the back of the bipap.  Eventually we turned it up to 10L - so much oxygen that it was pouring out of the back of the machine.

In the meantime, we called our parents to let them know what was going on and found Samantha a ride home from school.  When it became clear that the oxygen and the bipap wasn't helping, as Alli's sats dropped lower and lower, we made the decision to turn off the bipap machine.  Jason, Joshua, and I sat with Alli until Samantha arrived home from school.  Jason and I each had time holding her.  Once Samantha arrived home I went downstairs to meet her and explain what was going on.  She joined us in Alli's bedroom.  We turned on Alli's mobile, which she often listened to throughout the day, and I read her what had become our favorite book Wherever You Are my love will find you by Nancy Tillman.  After Alli had been quiet for a little while I asked Jason if I could hold her and had him get the stethoscope.  When I put it to her back there was silence.  It was an indescribable feeling.  We laid her on her bed and called the hospice nurse to come back in to her room.  She pronounced her dead at 1:15 pm.

The funeral home came later that evening to meet with us and take Alli in to their care.  They carried her out of our house wrapped in blankets in a Moses basket.  The medical supply company came to pick up her equipment.  The only way I can describe it is like the feeling you have after you take down the set from a play.  Her room looked so bare and the silence was deafening.  I would never hear Samantha say again, "Mommy, can I go peek in?"  That is what she would say every morning and every day after school when she wanted to visit Alli and her nurse.  Alli's room was her refuge during the day.  She would sit and play with the nurse's nook, lay in Alli's bed and look at books and listen to music, help the nurse put lotion on her.  She loved being in that room.

Over the course of the following days we planned and had the mass and burial.  The eulogy I delivered at the mass is included below.  I'll never know how I managed to get through it.  I am the person that can't pull it together at the funeral of a stranger.

And now, after the mass, after the burial, after the visitors have come and gone and our parents have started to go home, I find myself searching for Alli.  When I prepared myself for her death over the course of months leading up to this, I comforted myself knowing that she will be with us no matter what.  But I don't feel her right now and I can't find her.  I know that she is in Heaven, but it is as if she has been pulled aside in to some remote corner.  My hope is that she is cradled somewhere, being comforted, and told what a wonderful job she did.  She endured tremendous suffering.  I know that she will come back to me.  I don't know when that will be, but I find myself yearning for the feeling that she is with me.

Samantha is doing reasonably well.  We had been prepared in advance about what to expect from her - that she wouldn't necessarily experience continuous sadness, but that she would maybe be sad for a time and then ask to go out and play.  So, we meet her where she is at the moment and don't place many expectations or judgments on her.  She told Jason and me that there were angels in the room with us when Alli was dying.  She repeated that to my dad in a separate and independent conversation.  One quick story about her and then I will conclude for now - One of our neighborhood friends came over on Sunday afternoon and told Samantha, "I'm sorry for your loss."  To which Samantha replied, "Alli is not lost.  She was just visiting us on her way to Heaven."

Eulogy:

Trish Phillips writes, “The butterfly symbolizes transformation and joy. Its dance reflects the need for movement from where we are to our next phase of being.  Butterflies appear to dance as they flitter among the flowers. They remind us not to take things so seriously within our lives. They awaken a sense of lightness and joy. They remind us to get up and move, for if you do not move, you cannot dance.”

From the very beginning we strongly aligned Alli’s life with that of a butterfly.  We knew before she was born that she herself would physically endure many transformations, but that there would be great joy interspersed among them, and that once she emerged she would thrive.  Truthfully, or maybe selfishly, we assumed that the butterfly symbolized her existence, without realizing that the true transformation would really occur within us.

While Alli was in utero, we learned that she would likely have down syndrome and that she had a series of complicated heart defects.  We accepted that her life, as well as ours, would take a different course and made preparations for her arrival.  

When Alli arrived on July 1, 2011, we were encouraged by her strength and we ourselves were strengthened by her very presence and grace.  All of my anxiety and fear about what Alli’s future held subsided the first time I held her in my arms after she was born.  Her early weeks of life were strikingly similar to that of the typical newborn.  Full of diaper changes, nursing, tummy time, long naps, play time on her activity mat, and lots of cuddles.  Just holding her in those early days and weeks brought indescribable peace.

Alli’s onset of infantile spasms at around 4 months old set forth a chain of medical events that would profoundly change the course of her life, as well as ours.  From that time forward we found ourselves aggressively trying to chase down cures for one ailment after another, at each step hoping that once we cleared the hurdle in front of us she and we would return to the path on which our journey together had begun.

Many people assisted us in caring for Alli during this time.  She saw a variety of pediatric physicians, nurses, and therapists who shared a common goal of trying to give her the best life possible.  She bravely endured countless surgeries, tests, labs, and treatments in the hopes of curing her ailments.  Her home nurses cared for her as if she was their own child and gave Jason and me the ability to divide our time between each other and each of our children.  They allowed us to have some sense of balance in our life.  Along the way we met new friends and were humbled by their generosity and graciousness.  We had a faithful network of prayer warriors lifting Alli and our family up in constant prayer.  I believe it is their prayer that gave us the strength to face the challenges set before us each day.  They reassured us that Alli was surrounded by angels at all times.  Our co-workers at Deloitte supported us through the coordination and preparation of meals, many of which were home made and hand delivered.  They graciously allowed Jason the flexibility to work from the hospital or home and encouraged him to meet the immediate needs of Alli and our family when necessary. All the while we were supported by our family and friends.  Our parents spent countless days and weeks in our home helping with household chores, running errands, and caring for Samantha and Joshua.  Our siblings and extended family sent constant words of support and expressions of love from a distance.  We had visits from family and friends when we were unable to travel to see them.  When we were able to travel, we took Alli to meet her family and friends in Detroit, Chicago, and Raleigh.  She met nearly every living relative she has and is deeply loved by each of them.  Each of these people has told us that their life, in some way, has been transformed by Alli.  

In the last weeks of Alli’s life we are so grateful that she was able to be home with us.  We enjoyed taking walks with her on nice days, reading to her, Samantha, and Joshua in her bed, sitting with her on our back patio, and including her in family meals and gatherings when she was able.  We tried to make her time at home with us as comfortable for her as possible.

On the day she died, Alli was surrounded by Jason, me, Samantha, and Joshua.  Jason, ever her protector, cradled her in his arms as she took her last breaths.  We know now that she is living a life free from the encumbrance of medical devices and physiological limitations and that she is able to dance freely in the company of her creator and the many loved ones that went before her.  

I leave you this afternoon with the words from Alli’s birth announcement.  “The butterfly is a symbol of change, joy, and transformation...our lives have been forever transformed by the life of Allison Claire Hakerem.”  With love, Jason, Megan, Samantha, and Joshua.