Get Out Your Needles because Life is Not Fair

From the pen of Laura. Written in May 2006.

I still have the knit cap my daughter wore her first couple days of life in the hospital. I keep it because of the memories it conjures up of new beginnings.

My son, however, never had the chance to need one of those little caps as he was whisked away by the doctors immediately upon his entry into this world. We knew Ira was going to have to fight for his life. At our 19 week sonogram the sonographer discovered a hole in his diaphragm. He was diagnosed with a Congenital Diaphragmatic Hernia. Ira's hernia was so severe that his liver, stomach, and some intestines were up in his chest crowding out his lungs. His lungs had no room to develop and so were not able to sustain him after his birth. He was put on a succession of ventilators none of which were able to give him enough support. On his second day of life, as a last resort, he was put on a heart-lung machine called ECMO. All of his blood was systematically drained from his body and oxygenated by this machine. The technology and the skill required of the doctors to sustain him were incomprehensible.

Even with all the technology and skill, Ira spent 10 of his first 12 months in the hospital. Although Ira is alive, there are many things I've mourned over the course of the last year. I mourned the fact that he was never able to nurse. I mourned never carrying him around in a sling, snuggled close to my body. I mourned for my three-year-old daughter who wanted her baby brother home so she could play with him and show him her toys. I mourned the chance to show him off to anyone and everyone, as every mother loves to do. So many times I looked around in self-pity and thought life is not fair.

And there are things I continue to mourn today. I mourn for my family because we cannot go places all together due to Ira's fragility. I mourn that he cannot make noise when he cries because of his tracheotomoy. I mourn that he is one and still cannot sit up on his own. Again the thought life is not fair.

I want to scream, life is not fair when I see families headed off to the beach or to the baseball game. When I hear of families taking vacations or road trips together, the words ring in my ear.

The other day my husband was going to take our daughter to the park and to get ice cream. Sophia looked up at me and asked if I could go too. I calmly explained that someone had to stay at home with her brother but in my head I was whining about the unfairness of it all.

Recently, though, the phrase life is not fair has taken on a whole new meaning for me. I came across an article describing the plight of babies across the ocean and was beside myself. I learned that hundreds of thousands of babies are dying due to lack of sterile blades and cheap vaccines. They are dying because the knit cap we take for granted here in the U.S. to keep babies warm is an anomaly in some countries. Babies are dying from diarrhea and pneumonia -- sicknesses that could be easily remedied or avoided with simple vaccinations and tetanus shots. All of a sudden my exclamation of self-pity was turned into a proclamation of injustice. Life is not fair!

When I think about the time, expense, and skill required to keep my son alive there seems to be a complete disconnect between these two real-life situations. How can so much be afforded my son while another's child is lost so unjustifiably? How can one baby be granted hundreds of thousands of dollars worth of care while another life is denied a 15 cent measles shot?

This winter as I sat by my son's side in the PICU a close friend taught me how to knit. The hope was I would have something to occupy my mind as we waited for Ira to heal. This year my new skill will be put to use. I plan to join with thousands of fellow knitters around the country in Caps to the Capital - an initiative aiming to remind America's leaders that simple solutions can save millions of lives. I will knit baby caps and send them to Washington.

As a mother of a chronically ill child, I am daily faced with the reality that my son could die sooner rather than later. And as much as I try to live positively with that reality, there is nothing easy about the thought of losing him. The death of a child, regardless of whether the time spent on earth is measured in days or years, in this country or across the sea, is a loss from which one can never fully recover.

Today, as I hold my son and rock him to sleep, I will be thankful for the fact that he is alive. Although his life will continue to be supported by a machine I will be thankful for the heart that still beats and the lungs that are trying to grow. When I am tempted to think that life is not fair, I will remember that it most definitely is not.


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