Today is a very special day to me. On this day 8 years ago I gave birth to my oldest son Matthew. He was born with a full head of hair so handsome, had all his fingers and toes and as far as I could see perfect in every way. Within hours of his birth we found out that his little body was far from perfect, he was missing the whole left side of his heart. (hypoplastic left heart syndrome) We were told the road ahead would be a long one, and had three options. Hold our baby in our arms and let him peacefully pass away, free from pain of years of surgery. or we could try to get him a heart transplant, but most likely his heart would fail before a match would be found. Or send him to another state, for his 1st of many heart surgery’s ( that he only had 30% chance of living thru).
At 3 days old my tiny son, was in total heart failure and not a candidate for surgery, but after pleading with our surgeon to at least try Matthew had his first open heart surgery. He beat the odds and made it…. He spend months in the hospital in 3 different states. I came to love many other heart families, we shared in each others joys and heart ache. I watched many of them loose their sweet little ones. At that point we started to celebrate each day, week, and month Matthew made it realizing that each day was gift. Over the next three years our lives were dedicated to keeping him well enough for his next surgery. He was tube feed for almost 3 years, he did not go out into the general public in a effort to keep him well. We never knew what the next day would bring, after 14 heart surgery’s he has been stable and healthy the last 4 years. We still have issues come up, and every night I pray for his tiny heart to be strong, and for another day with my sweet little boy.
I was so young and had no idea how to be the Mom to a special needs child. The last 8 years have not always been easy, but have been well worth it and filled with joy. I have become a better person, more compassionate, I have learned to remember what is truly important in this life…..Family. So on this day I once again thank the Lord for eight wonderful years with a little boy who has filled my life with happiness.
This is a photo taken of his heart, during his last surgery.
He has always been a great example to me, of keeping a smile on your face and finding joy even when times are hard.