Wednesday, February 9, 2011

My Angels

(This is a re-post on what would have been my son Jack's 5th birthday. We miss you.)

An angel is a supernatural being found in many religions. In Christianity, Islam, Judaism, and Zoroastrianism, angels, as attendants or guardians to man, typically act as messengers from God. My daughter was born 5 weeks premature. There was no official reason for my daughter coming early, but on the night she was born the nurse told us that full moons often are to blame, and opened the window shade to the biggest full moon my wife and I had ever seen. I cried that night and asked God why he would do such a thing to such a small and helpless being and to please help her survive.

My daughter's lungs were just a little underdeveloped so she required assistance from a CPAP (Continuous Positive Airway Pressure) breather and some steroids to help the lungs finish developing. She spent over two weeks in the Newborn Intensive Care Unit which at the time seemed like an eternity. My wife and I were there everyday and for most of every night while my daughter learned how to eat and regulate her body temperature. We learned more in that time about prematurity and how a N.I.C.U.operates than we had ever known or ever would want to know but when it is your child in one of those incubator boxes you learn quickly. When we finally brought her home it was one of the greatest moments in my life.
Once you have a pre-term baby you are watched more closely than before and two years later my wife was being monitored closely indeed with our second child. We saw every moment of development on a black and white monitor thanks to the wonder of the sonogram. It was at one of these visits that our lives changed forever.
My wife and I always thought sonographers have a great job. They get to be a part of some of the greatest moments of a couples lives. They always have such a great bedside manner and we thoroughly enjoyed the visits for sonograms. It was during the fetal anatomy exam that we learned that there was another side to their jobs.
I will never forget the sonographers face as his pleasant demeanor changed to something more serious as he checked and rechecked what he was looking at. He said he was just having some trouble getting a good picture and left the room without telling us anything and when he returned he said we would need to go to the hospital for further examination and handed my wife the telephone to talk to a doctor. He asked her why we had not done the AFP test (an early genetic screen)to which we said that we chose not to do any tests because we would not do anything (i.e. terminate) if we found out something was wrong. Her face turned white and tears came rolling down her cheeks and she looked up to me and said "there's something wrong with the babies heart", barely able to talk.
We went to the hospital, where they performed a more detailed sonogram that proved our baby had a heart defect called Atrioventricular Septal Defect which basically meant that instead of four heart chambers our child had just one big one. This prompted a amniocentesis test that showed that our child had Down Syndrome also. This result came just before Thanksgiving that year and along with the genetic results of the amniocentesis we were given the sex of the child, a boy. It almost broke me to find out that my long hoped for son would have such a hard life. Growing up with three younger sisters and no brothers I spent most of my young life proclaiming that I would only have sons because I had my fill of being surrounded by girls. After the birth of my daughter I realized how a baby girl can snatch the heart of a father but I still longed for my boy. Here he was finally, but he was dealt a hard hand to play with for life, but I didn't care he was my son.
The mixed emotions of our news was hard at first but we resolutely moved forward and started preparing for the difficult journey ahead of us. We joined the National Down Syndrome Society and the Connecticut Down Syndrome Congress and read everything we could find on the Internet about heart defects and Down Syndrome. We wanted to know everything about we were about to go through because it was all we could do. We knew he was going to have to go through some major surgeries before he was even able to be brought home but we never lost hope for our son.
It was during this time, while on the computer one night researching my sons problems, that Freemasonry came into my focus. I had the TV on the History Channel as usual in the back ground and during a show on the Founding Fathers of the United States I heard the narrator say that so many of the signers of the Declaration of Independence were Freemasons. For some reason this statement got my attention. I had read things that mentioned them and had heard about them but did not know what it is they were about. Being at my computer already I Googled "Freemasons" and the rest is history that I have written about in more detail here before.
Soon afterward my wife went into labor 10 weeks too early, and although they tried everything to stop it, my son was born. The reason he came so early was that his stomach was not connected to his intestines a defect called Duodenal Atresia, so he did not, as babies do, swallow amniotic fluid to control the fluid level in the womb so my wife had too much, which (we believe) caused her labor. Soon after his birth the doctors discovered he also had Esophageal Atresia which meant his esophagus did not connect to his stomach. All of these problems are associated with children with Down Syndrome but usually one at a time. My son got 'em all at once.
He went into major surgery five days into his life to connect his stomach to his intestines and correct a couple of other things that he had wrong. He survived that surgery and started the long haul to get him stronger and bigger for the other surgeries that he needed to survive. My wife and I traveled 40 miles each way from our house to the hospital every day to be with our son. We wanted him to know that we were there for him.
Our previous experience with a N.I.C.U. because of our daughter proved invaluable during our ordeal with our son and we often said that if it weren't for her we would have never made it. Her short stay was a walk in the park compared to what we went through with my son, but it was our introductory class to what we were to go through.
My son went through three more major surgeries, including an open heart and some serious scares before finally succumbing to the difficulty of constantly fighting for life. He was just too tired after struggling for six months to live. He died in our arms surrounded by people who love him. We will never forget those men and women at the hospital who gave him every shot for life. He was and will always be my angel, my son.
Angels are messengers from God.
My daughter was an angel sent to my wife and I to learn about neonatal intensive care and she constantly reminds us why it is we have children. She was our guiding light during those six months and continues that duty to this day. The day after my son died she came to us and said "Jack's not sick anymore, he's in heaven" never had we heard more angelic words.
My son taught me how precious life is. It is not as easy as it seems and must be fought for at all cost, he never gave up. He guided me to things that I forgot I had in me and returned belief to my life. I am not the same man that I was before him. I think I am now closer to what I was put here in the first place for because I let things fall the way they come and trust that it is for a higher purpose. I got his message.
Thanks Jack.
P.S. We have since been blessed by another angel who's full term delivery and smiley face have helped heal the loss of our precious son.
P.P.S. We now have been blessed with yet a fourth little gift, another son the happiest boy we know.


Tom Accuosti said...

M, there's nothing that I can say that ... hell, I can't even think of anything at all except to tell you how sorry I am for you and your wife, and how I hope for continued happiness with your new angel.

M.M.M. from the North Eastern Corner said...

Thanks Tom, no need for sorrow, we were bleesed with him for a lot longer than anyone thought and he still is with us always.

Gingerman said...


My oldest child died in bed a year ago. She was 30 years old, and, to me, just born. There is no one else in your life you know so fully, and so little than your baby. You'll miss him, and you have seen the blessings that you have been given. One of these is to have been deemed good enough to care for this perfect boy, and strong enough to let him go.

Radcliffe said...

Thanks for sharing this with us. It never ceases to amaze, the stupendous courage which exists in the universe.

M.M.M. from the North Eastern Corner said...

My main reason for sharing our story is that my wife and I are raising money for the March of Dimes. We are Marching for Babies for the third year in a row and would appreciate any contributions to that worthy cause. Click on the widget on the top of my sidebar if you would like to help.