I often get asked why I don't sleep. Or why do I always look like I have a million things running through my mind. The truth is, I have always been a thinker. My personality has always been more anxiety driven. I always have to be doing something. I am a go getter for sure. All of these crazy attributes of my personality have seemed fitting and crucial to fighting this disease. To exhausting myself physcially, emotionally, mentally and then some.. Seems to be the repetitive attributes to this disease. Ones that do not colapse me or limit me in anyway. When you feel like you have no more left, you dig deeper and just focus on the next breath.
When my 2 day old baby was taken from my arms and handed over to a nurse I had never met, I thought this could be it. I carried this baby for 9 months. 42 weeks + 1 day. I endured so many medical challenges during my pregnancy, went through hours of natural labor and delivery, just for him to be taken away from me. Maybe taken away from me forever. For once in my life, I felt completely hopeless. I had no back up plan or no way to figure this out. I knew that I had to rely on these complete strangers to help my son..
When you go through the initial shock of an experience like mine, this thing inside of you ignites. This switch is turned on and it never seems to be able to shut off. When your child is diagnosed with a chronic, rare, medical condition you become this person that you never even knew you could be. Times when you would sit down and be quiet have turned into times when you keep pushing for an answer. Times when you would let things ride out and see what happens are gone. There is no waiting in these types of things. Time is critical now. Your senses are taken up a notch and the slightest shift in your child's demeanor usually means a storm is brewing. Which storm do we have to fight this time? When you wake up in the morning just praying and hoping for a good day, medical wise. A day where you can just get done the bare minimum. Or one day that you don't have to worry about something. When you realize years have gone by and you seem to have really lost yourself in all of this. That you have one tiny person depending on you to give them the best qualify of life possible. That this little human depends on you to fight for them. To figure out the things that work. To ask for second opinions. If you have a slight glimmer of hope that one thing may work, you try it. You spend countless hours browsing medical journals, groups online, reading books, reading anything and everything that could even possibly maybe even help a little.
A lot of times when people want things in life, they work really hard to get it. Most achieve it. You know how this feels? Having a child with a chronic medical condition that there is no cure for.. You know what it feels like? That the rug keeps repeatedly being ripped out from under you. Like a big slap in the face. Like you work so hard and are about to reach the goal, and you fall back down again. After awhile, you feel hopeless. You spend a lot of time wondering what it will be like when your child is 6, 7, 13, 15, 18, 21.. Will it ever get better? Will he always have stomach upset and just want to cuddle on the couch? Will he be able to even eat a variety of foods to keep himself healthy because he has a multitude of food allergies. Will he learn to listen to his body and know what it needs. What if something happens to me, his mom? The person who has dedicated her life to keeping him alive. When you go back to the initial time you really felt like you may never hold your child alive again, you never want to go back to that feeling again. You never want to go back there again. So you keep fighting, fighting like you have for the last (roughly) 1,460 days your child has been alive. You go back to that day when that switch was turned on and you remember how that feeling felt. That feeling always is on the forefront. Taunting you sometimes. Sometimes when your child is really, really sick, that feeling sneaks it's way into you, and you just for a moment feel it. But then you remember how hard you have fought and for how long you have been doing this. You can't give up now. That little baby needs you. So you set your fears aside, and you focus on the challenge ahead. Afterall, you have no other choice.