Happy Birthday My Beautiful Angel

I wrote this on Sam's 1st birthday... I remember vividly that wonderful day in October 2005 when I found out that I was pregnant. It was truly the greatest day in my life. I was so excited but I did not want to call anyone. I wanted my husband to be the first to know and I wanted to see his reaction in person. I anxiously waited for him to come home from work. I left the results of the pregnancy test on the bathroom counter. Scott came home and went to wash up in the bathroom and noticed the test. He then came running into the other room ecstatic. Then the calls began and the dreams and planning began too. Over the next few months we started looking for furniture and clothes and all the wonderful things you do while you are waiting for your precious child to arrive. Scott cleaned out the second bedroom in our two bedroom apartment and began painting. What a great time in our lives… Then at around 8 months into my pregnancy things started to take a turn for the worse. My pregnancy was not going well. My tests came back abnormal and no one knew what the issue was. We anxiously awaited the arrival of our baby with tremendous fear. The dreams became nightmares and the anxiety made my husband and I sick. Then on July 31, 2006 our baby boy Sam arrived. I knew right away my baby was in big trouble. As soon as they gave him to me I noticed immediately he wasn’t swallowing, couldn’t suck, and the left side of his face did not move. After various tests and numerous days, weeks and months in four different NICUs we had no diagnosis. The doctors hypothesized that Sam had a stroke in utero. As a result he does not walk, talk or eat by mouth. He chronically aspirates his own saliva which in effect is like drowning himself every minute of every day. Since his birth we have been in and out of ERs and have had numerous extended stays at various hospitals throughout NYC and NJ. The pain is unbearable and the financial burden is overwhelming. I am very lucky to have Scott fight so hard day in and day out to get everything Sam is entitled to, be it nursing, therapy and medical equipment, therapists and doctor visits. Unfortunately though it is a fight. We do not take no for answer although that is all we here. “No your son will never walk, so why would I approve a walker”…”No, your son will never eat, so no need for the swallowing therapist to come to your house twice a week”…”No, your son will most likely not make it to ten years of age so no need for nursing to only prolong the inevitable”…”No, your dreams are shattered so don’t waste my time!” Scott and I are not oblivious to the medical realities of our son’s condition but we will not take “no” for an answer and we are willing to sacrifice our future and our dreams to make Sam’s next day a little better. This though does come with an emotional, physical and financial price. When the alarm clock goes off every morning Scott and I look at each and say “here we go again”. Another marathon to be run every single solitary day, the race never stops and there is never any reprieve. And although it is a grueling and terrible life, one I would not wish on my worst enemy, we still try and find happiness. We try and make the best out of what G-d has given us. To see Sam smile or to one day hear him say mommy is worth it. “Just make it one more day my son, tomorrow will be better.”

That was then, this is now... So today on Sam's 6th birthday things are better but still difficult and the marathon continues. As a matter of fact we have a mediation this morning with our school district to get more services for Sam that he so desperately needs. We have become much better at fighting and getting what we need for Sam and in turn Sam is doing all the better because of it. It is a hard life but it has become OK. ALl of the struggles, pain, anxiety, and heartache melts away every time we see our beautiful boy smile. Happy Birthday to the most beautiful angel in the world. May you continue to light up our world with your beautiful smile and radiating energy!