Joseph Dominic Lillo was born on June 4, 2008, presumably healthy.  Though he was 3 weeks and 1 day early, the doctors had no suspicions there was anything wrong, in fact, I was given an AMNIO to test for lung size and function where he passed with flying colors.  When he was born he passed his APGAR (Appearance, Pulse, Grimace, Activity, Respiration) Test without fail, he was breathing on his own, and was doing all of the 'normal' newborn baby things.  As his mom, I immediately thought there was something not right.  His head and neck were 'floppier' than his sister's were at birth.  He didn't seem to have the same level of control she had.  I knew I shouldn't be comparing them, since no two children will be identical, I spoke with the doctors anyway.  This was marked off as growth and development because he was 3 weeks early, although his sister was 2 weeks early.

We wound up leaving the hospital a day early just to 'get home' and start our life as a family.  I continued to worry about that lack of musculature in his neck and my husband worried about his protruding belly during respiration.  Again, at our 1 week visit, the doctors thought it was due to growth and development.  However, on July 8, 2008, at his one month well visit, a bomb was dropped.  We brought up our concerns at the same instance his doctor, Dr. Garafalo of Pediatric Specialties in Hackensack, NJ, brought up the identical concerns.  We were immediately sent over to the Pediatric ER at Hackensack University Medical Center for further evaluation.  Again, the ER doctors thought growth and development, while other pediatric specialists disagreed. 

Our son stayed in Hackensack for a week before we had him transported to Children's Hospital of Philadelphia (CHOP), where he would be both clinically and genetically diagnosed with Spinal Muscular Atrophy Type I.  We were floored.  Though this was the same clinical diagnosis given at Hackensack, it wasn't official for us until we heard it from the experts at CHOP.  Unfortunately, there were signs that we missed due to lack of knowledge on both our part and the doctors part.  In hindsight, there were signs in utero that his movement slowed down, it didn't stop, just slowed.  I guess there were other signs too, maybe signs only a mom and dad would notice, unless you are the specialist doctors at CHOP. 

Dominic and I immediately had to make some serious decisions for our little angel.  Would we ventilate?  Would we have a feeding tube put in?  What extreme would we go to to help our son?  Unfortunately, there is no cure for SMA, and very few treatments.  We had to make quick, but well-thought out decisions.  How do we do this, we both thought?  How do we make a decision like this?  Unfortunately, as a mom and dad, we were given no choice.  We both offered ourselves up medically to save our son's life, but there was nothing.  So we made the very painful decision for Joseph to have Quality of Life NOT Quantity of Life. We decided for us, personally, prolonging a life that would never truly be lived, would be selfish.  How could we look into his knowing eyes, that pleaded at such an early age for help?  We knew our son would never walk, talk, play, eat, or even breath on his own.  His prognosis had given him a possible year of life with very invasive treatment.  We thought we should give him all of the love a family could give and all of the care we possibly could without being invasive. 

Joseph was in and out of the hospital for the last two months of his life. When he was finally released to us to bring him home, we had Hospice from St. Barnabas Hospital, Livingston, NJ in place.  Joseph had a feeding tube in his nose, as well as constant oxygen.  The last week of his life we administered pain medications to try to keep him as comfortable as possible. We can only hope and pray that it did, in fact, keep him comfortable.  By this point you had to be in front of him to see him cry, as you couldn't hear him, he did not have the strength to be heard by anyone other than his mommy and daddy.  This last week we knew he was doing very badly, so we called our family and friends to tell them it wasn't looking good.  My brother David flew in from Illinois, Dominic's cousin Donny, who is like a brother, flew in from California, and all of our local family and friends sat vigil with us, every step of the way.  However, on Thursday, August 28, 2008, I had had enough, and though I love my family and Dominic's family unconditionally, I needed to be alone with my family.  I guess my maternal instinct really kicked in, because that night Joseph started failing.  I picked him up at 2:30AM and begged him to not make me make phone calls to everyone in the middle of the night - his numbers leveled out and Joseph, Dominic, and I curled up in bed and fell asleep for the last time with my son. 

That morning around 5:30AM we woke to our son not doing well, his numbers were all over the place, his oxygen levels were erratic, as well as his heart rate.  Dominic was able to get up while I held on to Joseph for dear life and make the phone calls.  Within what now seems like seconds everyone was around us.  Joseph died in our arms that morning.  We watched the monitor crash, as we watched Joseph begin to smile, and all of the red marks on his face disappear, and his angelic skin looked like porcelain once again.  If I wasn't there, I would never have believed that at that moment we knew we did the best we could for our son, since that was the first time he looked truly content.  Our son is now in heaven and ironically he is watching over our family.  There is not a day, even a second, that goes by that we do not miss him...bad.  There are days where it seems as though someone has ripped our skin off only to leave us raw and exposed - because there are no other ways to describe the pain and loss you feel.  We know he is in a better place, a place where he is no longer sick or in pain.  A place he will throw a football or ride a motorcycle.  We will miss him everyday of our lives until we meet him again.