This is a long one. Make sure you've got your coffee and a snack. Chronic illness. It's not fun, nor is it easy. It involves a daily battle of fighting a disease that insists on trying to control your body no matter what you do to prevent it. When you are a child with chronic illness you are forced to give up part of your childhood to the disease. Missed days at school, slumber parties that can't be attended because the host has pets, baseball games that force you to sit on the bench because they make your asthma flare-up. Playing a game of tag with your buddies can result in two days on the couch.
Jakob has lived this life since birth. He was born with allergies and asthma and has been sick since he was only 1 month old...8 years is a long time to feel poorly. Yes there are good days- usually in the summer months when everything living outside is dead from the TX heat and swimming strengthens his lungs. But Jakob has been taking medicine every single day of his life since birth. At 8 years old he can swallow pills that most adults would consider to be huge. At 8 years old he is looking
forward to his surgery in one week. Most people are scared or nervous about having surgery. Jakob is looking forward to the relief we hope it will bring.
You see, Jakob has been growing an infection in his sinuses for 10 solid months now. Despite daily cleaning of his sinuses and despite antibiotics strong enough for a grown man- Jakob's sinuses have continued to grow infection and worsen without ever leaving for even just a moment.
Remember your worst sinus infection. Remember the pain you felt stabbing you in your forehead and behind your eyes. Remember how the pain throbbed when you would bend over to pick something up off the floor. Remember your nose being so stuffed-up that you couldn't breathe through it and couldn't taste the food you were trying to eat. Remember trying to blow your nose to relieve the pressure to no avail. Remember the feeling of exhaustion and fatigue and not having enough energy to get much done until the medicine started working. This has been Jakob's life for the last 3 years except the medicine
never actually works.He had surgery last December 31st to remove his tonsils, adenoids, and to flush out his turbinates. This was all done in hopes that the chronic infection would be flushed out of his head and that whatever wasn't removed would be taken care of by antibiotics. However, Jakob's CAT scan in February '09 showed that he still had infection in his sinuses. A CAT scan 2 weeks ago showed that the same infection was still present
and had gotten worse.
The plan on Wednesday, November 25th, is to go back in and clean Jakob's sinuses out again and to straighten a deviated septum. So in Jakob's 8 short years of life he is heading into his 3rd surgery. (The 1st one was for
Pneumococcal Pneumonia at the age of 3).
Now please don't misunderstand me. I am ever so thankful that although my son has a chronic illness that he is not fighting for his life and that we do not spend our days in the hospital. I am thankful that I have to "fight" for every single one of you lovely (and handsome) followers and that you are not drawn to me to read about the plight of my sick child. Those stories are horrific and I would never in a million years want to go through that heartache.
However, I do feel horrible that my son fights daily headaches (which I'm sure are severe), burning eyes, dizziness, and fatigue. I am humbled that despite the pain and misery that he feels he still has the gumption to be an 8 year old boy who plays baseball, loves video games, and will run around with his friends until his asthma forces him to stop- and
only then will he stop. He doesn't allow his chronic diseases to prevent him from living life.
Oh the things my children teach me.