The Monster that Lives in our house is Green, Hairy and very, very angry. He is constantly asking for more and more of us, and no matter what we do to help alleviate his frustration and anger he continues to roar louder. Some days he flashes his shiny, sharp teeth at us when he doesn’t want us getting close. We try hard to ignore him as much as we can, but the monster has a way of reminding us that no matter what we do he will never leave our home. When we became parents, we didn’t realize that a tiny little baby would also bring with him a hairy green monster named life threatening disease.
The most difficult part of living with a monster, is that they are just so unpredictable. We can be just minding our own business, and then suddenly the monster decides to flash us his teeth and roar. Soon our tiny little boy will be in the midst of an adrenal crisis, asthma flare up, or he will be running short of breath due to his serious heart condition. We made a promise to our son that no matter what the monster felt that day that we would try to give him the most typical childhood we could give. Unfortunately, there are days that the monster wins, he has to be in the hospital and have additional monitoring to ensure that the monster flaring up is only temporary. His monster also is so temperamental that the doctors have told us he needs to be seen a lot to manage what it is doing to him inside. They have to use x-rays, MRI’s and ultrasounds to see what the monster is doing in his body. There are days the monster remains stable. We go to the appointments, and nothing monumental will have changed. We mark those days as a victory against the monster. Then other days we go in for routine visits, and the doctors will let us know that the monster has infiltrated another part of his body.
As a baby the monster was only effecting his pituitary gland, but since birth the monster has invaded his brain, heart, lungs and liver. Doctors have amazing potions and skills, and sometimes they can slay the monster before it can spread. They have successfully extracted all the crud the monster left in his liver. However, we recently found out the only way we can defeat the monster in his heart and brain is via surgery. The monster has also taken over some of our son’s development. Apparently, this monster has decided that it wants to make motor processing difficult, and it means basic movement, eating and motor planning is really hard for our little guy. Thankfully the doctors have told us that therapy can help to temper the wrath of the monster in our child’s development. The therapists we have found have helped alleviate the effects of the monster. Each and every day our son takes a part of the monster and crushes it beneath his feet as he masters new skills. No matter how hard we have tried to master some skills, we realize we can’t always beat this monster. Sometimes the surgeons have to help us and intervene with surgeries. Our son will have surgeries soon to help him eat better, to strengthen his heart, and one day they will help his brain by alleviating the pressure.
No matter what we do to help our son, we know that the monster has taken a permanent place in his life. They tell us that the monster is just a part of his DNA. We live with the reality that no matter what interventions we take to improve his life, the monster is a permanent fixture in our lives. There is no cure that can completely extract his monster from his life, and therefore, as hard as it is, we have to learn to live with this nasty, green monster. I’ve learned that I really don’t have a say in what the monster is going to do, and instead of fighting him I try to watch what he is doing that day. If the monster seems to be sleeping, we take that opportunity to get out and enjoy the day. We get out and enjoy life as typically as we can. When the monster is hibernating, we go to friends, the zoo, the park, the lake, and we try as hard as possible to fill his life with memories. Our hope is the memories we give him will enable him to keep fighting the monster. We want him to know that despite the difficult fight he has with the monster that life is worth living. We never want our son to feel like the monster will win.
A really important part of living with a monster, is also remembering that you can’t let the monster define your day or your life. It’s important that we have friends and family support our journey. We have sorted through tons of people to find people that can truly understand and support where we are at and our limitations. Sometimes having a monster living with us means we can’t always hang out, go to events, or spend time with those we love. It’s been important to find friends that are understanding that we have limitations and often break plans. We want to be able to do the things we commit to doing, but there are always days the monster will flare and momentarily win. We also realize we have to find ways of taking care of ourselves as his parents. It’s important to take care of ourselves physically, emotionally and spiritually. Fighting the monster has tested every fiber of our bones, and some days it’s really hard to get up to fight another day. Yet, we know we have no choice and therefore we muster the energy to fight the monster. It’s also important to know that not everyone can see the monster. People often tell us that he looks healthy, but we know that the truth is the monster is a part of our lives. He might be invisible to strangers, but he’s nasty, green and vicious to us.
One day we know the monster might take our son, but we will fight tooth and nail to ensure that his days here are the best they can be. He might have a monster, but this monster is fighting a mama bear that will never stop fighting to give my son a chance. Today I challenge the monster and I say “BRING IT”. I’m not scared of the monster anymore.