Honestly without sugar coating it, life with a chronically ill child, sucks! It’s a living hell! I know I probably sound like a whinny, selfish mom but those who know me know how incredibly dedicated I am to my son. The love I feel for him is immeasurable… What I hate is his disease and the situations associated with the disease. He is always achy and hurts. The medications make him feel nauseated, give him headaches and nose bleeds. He is always grouchy and anxious. I write this as he looks out the window at the rain and says … “Remember when I use to play in the rain? :::sigh::: Those were the good ole days momma” I really think my heart broke yet again. I’m surprised I still have a heart… It breaks all the time because of what my son goes through. Want to know why my son can’t play in the rain? Because the arthritis is so bad in his hips, knees and ankles that if he were to slip and fall in the rain it can cause a catistrophic injury … Popped out or broken hip, hyperextended knee, a dislocated ankle. Just one simple fall can put him in a hospital or wheelchair. Not to mention the pain he will feel even if he does not fall… If and when my son plays or moves more than usual … He hurts for days to come. Then there is homeschooling … Actually school in general … ! I seriously don’t know how we do it sometimes … I am trying to relearn things so I can turn around and teach them to him. Because of the drugs he’s on he has difficulty concentrating for extended periods of time … Teaching him how to simplify fractions took us 6 days! 6 days of tears, screaming (yes both him and I) … And we danced and rejoiced when he got it only to realize his class by then was on multiplying fractions …. We were about 4-6 lessons behind. Then the tears started again… And his self talk is horrible “maybe I’m just stupid”, ” i’m just dumb”, “everyone in class says its easy mom but i’m just to stupid to get it”, “I wish I could just die mom”. Honestly the pain I feel in my soul when my son says those things is indescribable. We are always behind, he has such a difficulty putting thought to paper. This is a child who before he became sick had straight A’s, and was always on honor roll. If you have had ever had the opportunity to speak to Jacob you would know how sweet, kind, and intelligent he is. But school has become so difficult. I don’t fully understand his rights having that he has a disability. I am always on edge and trying to argue his disease and condition to faculty and staff with no help. Jacob has no help. I have no help. How do I fix this? What the hell do I do and where do I start?
Because of money issues, I had to go back to work this week. So now I have a sick child, a house to take care of, 2 other healthy children to tend to, 2 dogs, homeschooling, no social life, my own health issues, and now work. Hard work that kills my body. I come home and I can hardly get out of my car. But I come home to dishes, laundry, floors and homeschool. Making sure Jake gets his medication, give him his shots, do his daily physical therapy. My husband can not work anymore than what he already does. He is a fire captain so work does not mean he leaves at 7am and is home by 5-6pm… nope… it means that as of today I have not seen my husband in 8 days. When he leaves he is usually gone for anywhere from 3 days to 20 some days. I don’t get a break … ever. It makes me edgy and emotional. I’m tired, sick, fat and feel horribly guilty for resenting my son sometimes. I can’t go to the gym, see my friends or even take a quiet bath without needing to do something for him or someone else in this house. My hair is falling out, my body aches and I just want to pack a bag and leave. Just drive until I can’t drive any more and then just sleeping. Sleeping until my body has had enough. I sound like a horrible mother huh?
Jacob’s insurance and medications went up this year. I spend at least 10 hours a month on the phone dealing with appointments, pharmacies, insurance, etc. Does not sound like much? Hold the phone to your ear for 10 hours then come talk to me. I wake up everytime I hear a noise and run to Jacob’s room because I wonder… did he have a seizure? Did he fall? Does he need water or does he need to use the bathroom and can’t walk? So most nights I sleep in intervals. I also stay up wondering how we are going to make it through the month? Will we have enough money for food, gas? How will I pay for my daughter to go to college next year? She was supposed to go to Santa Barbara to play water polo, but we can no longer afford to send her. So she will stay here and go to RCC and play there. Don’t get me wrong its probably a better team and a better situation in general but do you know how difficult it was to tell her that? I am crying just writing it. I have to run now… meeting at Jacob’s school so I can hear how bad he’s doing and how behind he is. I will continue my rant later. Much love ! Please pray for Jacob.