I am the father of a 2 year old little boy named Milo. He is bright, funny, smart, handsome and warms the hearts of everyone who meets him. He also has cerebral palsy.
Cerebral Palsy can be defined as: A condition characterized by paralysis, weakness, in coordination and/or other motor dysfunction caused by brain damage or birth trauma.
Milo was born 6 weeks early and we were immediately concerned that something wasn't right. He did not easily take to feeding and was given a feeding tube. After many restless nights and relentless practice feeding at the hospital, we decided that it was something we do at home and took our stubborn little baby boy home.
Things at home did not get any better. We hardly slept since Milo needed to be fed once an hour just to get enough nurishment to survive. After awhile sleep was a distant memory and the waking world was spent in an exhausted haze.
Things for Milo were no better, he was constantly unhappy. He seemed to be so uncomfortable in his little body and cried 90 percent of the day. He did not smile or or laugh. I can not explain the pain I felt giving so much to my baby and not receiving a hint of his love in return. Heartbroken and defeated we started to investigate the possibility there was more going on than a fussy baby.
After many Google searches and visits with doctors the enevitable finally came. Milo was diagnosed with Periventricular Leukomalacia or PVL. This is a little known disorder but basically is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue. After we got used to pronouncing it it was time to do something about it. Just when we got used to the idea of brain damage, Milo started having seizures.
Many visits to Neurologists later, Milo was given meds to reduce the effects of his PVL and seizure meds. The next challenge was giving a baby that could barely swallow his formula, medicine that he badly needed to stop the seizures and give him some peace from his tense arms and legs.
Whew...Ok skip some more ridiculously sleepless months and it was time to accept the fact that Milo was going to need a feeding tube. He was "failing to thrive". 3 words that still make cringe (even typing them!). We got a nasal tube to begin with that advanced to a G-tube that was a direct line to his stomach.
He started to gain weight but now was vomitting relentlessly. For some reason, his stomach could not hold food. We were never quite sure why, but at this point we were no longer in denial and took a bigger step. Milo got a J-tube. Which is a tube that bypasses the stomach and goes directly into his intestine.
This is finally when we met the real Milo. The baby we were waiting for finally came to us. No longer vomitting non-stop and able to get the medicine he needed, Milo started to shine. The day he smiled was the day all the pain I felt all disappeared. The stabbing pain in my heart began to heal. Soon he was laughing. It sounded foriegn but definitely a dialect I could understand. Soon we were all sleeping through the night and it was finally time to join the waking world. I began to smile again. As if we both learned to do it at the same time.
He has had some hopsital stays due to the vomiting issue, which as of the time of this is being written is still an issue. He attends physical,occupational, and speech therapy a couple of days each week and it has been helping a lot.The hospital stays have become very infrequent and we now have (given the circumstances) a very stable life.
Occasionally someone will tell me how beautiful and amazing he is. Then they tell me it must be very sad or heartbreaking. I tell them "it was". No longer could I say at any point that life with Milo is sad. We have moved past all the stages of grief and have accepted. Accepted the miracle we have been given. Accepted that he is a gift. A little gift that can smile and laugh in the face of the challenges life has presented him. The name Milo means, "Soldier". We didn't realize it at the time we gave him the name, but the name couldn't be more fitting.
So, it turns out that life is fair. The love you make is equal to the love you take. I didn't always think this way. Now I realize I was a fool.
Thank you for reading this.