When my son was born weighing just 675 grams we were met with an incredible amount of bad news. Doctor after doctor sat us down and warned us about the long term effects of being born so small – he may never walk, never talk, have possible brain damage, confined to a wheelchair, not able to take care of himself – the list was literally endless. Day after day I would sit beside his isolette and watch him grow – or not grow. At his smallest weight he was just 490 grams. I would pump milk for him to ‘drink’ through a tube, chat with the nurses about how he was doing and read books to him. I never left his side. With every day that passed, there were new issues and new hurdles, but abandoning hope was never an option. I knew he wouldn’t be perfect but I was his mom and I loved him no matter what. I woke up every day with a full heart and stayed with him 18 hours a day. The picture below is of me the first time I was able to hold him. He was 4 weeks old and still weighed less than 2lbs.
Over the last 8 years we have spent endless hours working with therapists, school officials and doctors making decisions of what the right path is for our son. His is not the same as the other kids but he has his own charm that makes him so unique. If you were to meet him you may not even know that he has autism.
This morning I came across an article at Today.com that notes more extreme preemies are surviving, but facing lifelong challenges. Guess what? Parents of these babies already know this but they chose to nurture and love their little miracles anyway. I guarantee you that. Like us, not a day went by during their child’s care that doctors didn’t warm them about what could be. But also like us – they don’t care.
I wish that these news outlets would sit back and realize that not every person needs a perfect child to be happy. My son is a challenge. I will be the first to admit it. Every day of our life my husband and I work very hard to keep him focused and present. But god is he amazing. Really amazing. He could list off almost all Elvis’ movies, the songs he sang in them and maybe sing all the words too. He knows the most ridiculous facts about the Beatles, Bob Marley, John Lennon, Burton Cummings and Kenny Rogers. He collects 8-tracks(remember them?), LP’s, tapes and VHS’s, and loves searching the internet for rare and unique recordings of his favorite artists.
Every preemie has their own path, but many grow up to be incredible little people, who have a fighting spirit that comes from day one. Most of the time these extreme situations activate that same fighting spirit in their parents. I guess it’s true what they say, ‘God only gives special children to special people‘ and we don’t care about society’s infatuation with perfection.
Our son has brought more joy into our lives that I can write here. I know that often articles about these tiny babies are written to show all sides, but for parents who have lived it and often sacrificed everything to have their baby, it’s a slap in the face.
What we should be doing is celebrating the incredible doctors and nurses who make dreams come true for families everyday by taking such incredible care of these tiny babies. I can’t begin to tell you how dedicated the team was that looked after my son.
For many couples the journey to become parents is met with a lot of heartache, fertility issues, pregnancy losses and early deliveries. A baby that arrives at any gestation is truly a gift from god and everyone should remember that.