Memories of Joseph
Our Milky Way Joseph DeNicola
March 18 2007 – November 4 2014
With all my love son, for you brighten up the Milky Way
Please feel free to sharing to help the next.
I am Joseph DeNicola’s mom Julianne. Joseph blessed us on March 18 2007. On St. Patty’s day Joseph decided, he wanted to join the celebration and decided to arrive a little early. I named Joseph after St. Joseph, for when I worked in 1 WTC I was blessed with my first miracle my son Anthony DeNicola, to having his first day of school and had not gone into work that day on 911. I made a promise to the heavens if I had another baby I will name him after St. Joseph since it was a protection pray that I kept on my desk at work and said it in the morning as I turned on my computer to start the day.
Joseph being the love that he is , decided since my family is both Irish and Italian that he will not be born on St Patricks day, 17th or on St. Josephs day 19th but right in between. March 18 just a little past midnight. As everyone was enjoying corn beef in my delivery room, even the doctors I thought to myself, this is truly a celebration.
Joseph born a with a deep mark between his brow like a birth mark, I was concerned and asked what was this mark, but it was just normal the doctors said. With time it will go away. I would sleep next to his crib each night, for something in my told me to always be by his side since the moment he was born.
Within a month, after attempting breast feeding as I did for my first miracle Anthony whom was only 3.5 lbs born very early, to getting him the best for is immune system each day, I would go to the hospital to feed him, day and night. Until he was big enough to come home. The first baby to leave the hospital at 4 lbs strong and healthy but little. My first little love.
Within the first few weeks of being pregnant with Joseph we knew that I was high risk and they started me on progesterone shots weekly. I am not one to take medicines at all, but as we do, we do to making sure that our babies get the chances in life at all cost.
After Josephs birth, within the first week I noticed that my breasts would not produce milk for him, oddly since with Anthony I was non stop. Even had the best breast pump since I knew with Anthony, the ordeal ready and waiting. I was so upset I recall asking the heavens why, why could I not produce to feed my new blessing.
Now I know, it would have harmed him. My body knew before me. When I was pregnant with Joseph I craved Milk all the time, see I forever had heart burn, thinking that I was going to have a monkey instead of my Angel at sometimes. They say hair is the reason for such.
Within that time, we had started Joseph in the hospital on Similac every baby in the hospital was started on such. I noticed after his first immune shot in the hospital that his mark on his brow would get darker after he was fed, but nothing else at that time.
When we got home I noticed that he was not going to the bathroom correctly. I am not one to wait or think what it could be, I go right to the doctor that is there job not mine. I was sent to a specialist, for his stomach and they placed him on soy. So here we where now, my new little Soy boy I would call him. After a months time, Joseph was treated for a hernia, I was told that sometimes the stomach walls do not close during child birth.
I remember sitting outside the OR as they had to do the surgery, praying and praying. My baby already born, has to face, a lot I recall thinking. Well each day from there, a new with Joseph. Later to finding out he had a slight heart murmur, and a carrier of talasima, which was from my husbands side of the family, Italians more than most have it.
It was now almost to his first years birthday and we decided to start to cut his formula with whole milk, with the fist small amount I will never forget that night. As he was drinking he started to turn blue and he was having difficulty breathing. My husband and I did not know what to do, not a second wasted I called 911, and my husband thought it was asthma since we had been facing such with my older son Anthony.
Joseph had been sick during that week prior and had been put on an antibiotic, and they assumed when we arrived at the hospital that he was having an allergy attack from such.
So we still did not think it was Milk. We had gone home and after a month , still on Soy milk only, just something told me not to give him anything different.
It was time, as he was needing more to fill him. We decided to start to feed him solid foods. little by little
Pastina, a little bit of butter and milk, within a few seconds he started to get a redness all over his face, I was home during that time daily and not working, with Joseph. I had extended my maternity since of his illness and to tell you it was not a thought of even going back. I had to watch my little one beyond.
I called the doctor right away and was told to give him a little benedryl, so I did and the rash had gone away from his face, when my husband came home that night we made an appointment to go to the doctor, thinking back now, wow what a chance we had been taking, but the doctor did not see an urgency. We had been sent to get allergy testing for Joseph, I remember sitting in the doctors thinking I have to understand this all beyond.
I had gone home, and researched like crazy, everything I could find, and thanks to FAAN there had been so much available.
I was ready to go to the doctors with Joseph to get him tested and understood what we where going to expect, we had been interviewed regarding everything about his eating and events and when he had a few more breakouts.
Grill Cheese, I cannot tell you how a bite of grill cheese took my sons breath away and off to the hospital again, after I called 911.
Then we learned it was Casein, Whey and Milk and Hazelnuts. After such, I reached out to finding the best doctors possible and I decided as I am beyond limits of distance to get the whole family in the car, without warning after reading the best article about testing being done on a boy with milk allergies at Boston childrens Hospital. I was told that Joseph was to young but when he came to the age of 5 he would be the right age. So off we went, you had to see my husbands face when I told them all to get in the car we are going to Boston. LOL. I will not forget that day. I had researched the doctor whom was in charge of the testing, and said that is going to be Josephs new doctor.
All mother know to get the best for our babies. Regardless. So after our wonderful weekend, we had made it, we knew exactly what Joseph was allergic to. The details of the research complete on Joseph was unreal. The interviews and the doctors from Harvard spent so much time with us. Hours interviewing all of us including my son Anthony.
Anthony I noticed was now very much protective of Joseph, but paid very very close attention to the doctors and he took care of Joseph beyond. A child already facing the fears he was hearing of losing his brother if the worst was to happen, he was not allowing any chances. He followed Joseph like a Hawk.
Telling people sometimes before I could even open my mouth to speak, to tell them to wash their mouth before even kissing Joseph.
Well over the years we all had studied allergies beyond. I had been to the extent that anyone that watched Joseph had to go thru CPR classes. My poor mother in law Anna, was terrified to watching him, but she did. Everyone, knew what needed to be done and the signs. My sister would spend hours on hours cleaning her house from her kids, eating and playing with no chance to even a trace of milk in her house before Joseph came over to play with his cousins Frankie Louis and his princess Angelina.
Well after years of hard times, with my husband and not to go into details since this is Joseph's story and not ours, we had fallen into separation. Week with him and a week with me. I was always in fear for when I was not with Joseph, but in my heart I reminded myself that my son Anthony was with him. See I trusted him more than anyone with Joseph. Beyond.
A few months of separation turned into a very ugly divorce and now the distance had to be made for the sacrifice of my kids not to having to deal with the fighting and stressors.
It has been two years since, and I was set to see and be with my kids, but the ex plans always altered, time in and out. Continuously, finally a date set November 11 2014, I was going to hold my Joseph again finally after all the time has passed. Again, the reason of distance was for my safety. That is a story for another time. Domestic Violence and divorce and custody battles during and dealing with food allergies, will be the next awareness I will be helping with once I gain my strength.
I made arrangements on the morning of October 31 my airline tickets purchased, talked with my family, my sister that I was on my way and I could not wait to see my son. She was so excited for me as everyone whom has know what this separation was doing on both Joseph and I. We had been inseparable to being separated. What was to be a shot time, adjourned and adjourned and adjourned, the system as I say sucks.
Well I had gone into work that day of October 31 2014 and came home, I am pagan and it was a holiday that I loved, as well my Joseph so very much. See Joseph was obsessed with Halloween and Pumpkins since he was a baby. Every thing was pumpkins and orange and in each picture you will see him regardless if it was easter Joseph in a Halloween shirt of some kind. LOL. My Joe.
When I got home , I remember sitting down, and a feeling came over me, I did not like it. At all, but what do we do when that happens. Just wonder. I said I have to go downstairs and see what Joseph is dressed like this Halloween since my ex having physical custody since I did not want my kids to be taken out of their lives schools and friends. I gave the home to them. It was temporary and still is for my ex to having them and living in the house.
I went down stairs well actually I ran downstairs since that feeling, and looked at my older sons Twitter page, and there as I looked, it saying “ I am not listening to what they say Joseph, come back to me you need to be okay, I cannot go on with out you” , I called the only two hospitals in Staten Island that I now he would take Joseph and got my ex on the phone, he told me that they had been trick o treating and then went to his cousin Marias house as we did each year. They ordered pizza, and he had a special pizza that Joseph would have that the place made special since they knew of his allergies. He said he started to have trouble breathing and he rushed him home to get his medicines, he put him on the breathing nebulizer thinking at first it was seasonal asthma, and then seen it was more and grabbed the epi pen. Then he ran outside noticing nothing was working got our neighbor Todd and drove to the ER.”
By this time, and at that time, Joseph had already suffered two heart attacks, but they brought him back, my sister had me on speaker talking to him until I could get there for him, she spent the night alone with Joseph that night until I was there in the morning, my ex went home with my older son. Longest flight it felt like in my life, they made arrangements for me on the plane, to sit in front so I could get in and out and the pilots made an announcement to pray for his safety since I still did not know the true condition until I got to there, from Green bay to Staten Island it felt like forever, but only a few hours time door to door.
When I got there, I held my son for the first time in a long time, but it was already to late, to much brain damage, his eyes still dilating but the damage to much. We spent the next day praying beyond and on Nov 2 I seen the angels, and I knew and felt in my heart they had come for him, at that same time the nurses whom work beyond for my son and the doctors miracle workers, said he was no longer responding and they will do the final test on the 4th.
We all prayed and the love and support from all of you the miracles being requested felt. My heart and soul decided as I was placed in my sons bed to hold him as they where going to take him off the support, the organ donors came into the room and said to my ex, we honor your decision, not to donate, but that was a family decision and I knew at that moment with all the love of our family there and standing around, that was the time to talk, and we all did and we decided that it was the miracles that you all had been praying for and another mother will get a call that their baby will be saved.
I thank all of you my family friend and our food allergy family. I love you all.
Our Angel Joseph our Milkyway guardian will always protect all of you, see it was not the EPI pen that did not work it was time, and the time it takes we do not have time to think just do. So JUST DO IT, NEVER WASTE TIME and ALWAYS have EPI on you , just as you put shoes on your feet each day. Someone needs to invent this somehow…
He will forever protect you all… We love you
Joseph’s first love
We love pictures and letter from your little ones to Joseph I read them and share each one with him each day. They can be mailed to
1405 W Mason Street
Some videos of Joseph on my youtube I made. Hope you like them all. I will forever be a strong advocate for food allergies, you are my family and your children as if the same as mine. Always... https://www.youtube.com/watch?v=iWaXqMQKTjw
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