One of the things I think is unique about this blog is the fact it comes from a male perspective. The perspective of a husband and father. I want to share with you what I feel like at this exact moment with all of this going on around me.
In my family my wife is sick. She has fibromyalgia which is basicly a life sentence of constant pain. Lizze has migraines almost everyday. When she walks around I can hear her joints pop due to the arthritis. She carries this burden so gracefully it’s completely humbling.
Gavin our 10 year old son whom I have raised since he was about a year old and finally was able to adopt about 2 years ago is autistic. Not only did God see fit to challenge him with autism but he also added bipolar,adhd,ptsd,ocd,pica,sensory integration disorder,conduct disorder and for shits and giggles he tossed in random psychotic breaks. Despite all of these things Gavin never complains about any of it. He goes on with his life in his own little world seemingly oblivious to the challenges that await him the rest of his life.
Elliott Richard just turned 4 years old last month. He almost wasn’t here. He was born premature despite 7 months for complete bedrest. He should have been ok but shortly after he was born (minutes) his left lung burst. If that wasn’t bad enough the right one shortly followed. Then came the pneumonia. Even after being released following weeks of being in the NICU he was admitted to the hospital a half dozen times the first year of his life. Now he is being stripped of his childhood as a result of all of this and guess what he never complains either.
Emmett John is our 22 month old. He was also premature after 7 months of complete bedrest. He spent the first months of his life tied to wallaby blanket do to sever jaundice. After that is was months on the apnea monitor. He would just randomly stop breathing so he was tied to this monitor 24 hrs a day for months. He battled constant ear infections and eventually had tubes put in. After the tubes he started having balance issues. It was off to the hosptial for MRI’s to rule out brain tumors. He never started talking. The audiologist said he was most likely profoundly deaf. We had to wait months to get the ABR done. That is the definitive test that tells you exactly what’s going on. While we waited we learned and taught him sign language. We came to grips that he would never hear us tell him we love him. Just as we start to adjust to this the ABR reveals that his hearing is perfect. Great right? Wrong. Our excitement is quickly quashed because it turns out they think he is autistic also. He may also be non-verbal. Now it another waiting game to get into the clinic to find out where exactly he falls. My poor baby is so frustrated with life because he has no way to communicate with us. He has never said a single word.
As a father and husband it’s my job to protect and provide for my family. I’m a care giver and protector by nature. I was a fire/medic until I destroyed my back on a call. I ran as a medic for years after that until I just couldn’t take the things I saw anymore. My last call I ever ran was a truck vs 4 year old little girl. The driver was drunk and drove thru her front yard while she was playing. This all happened about the time Elliott Richard was a year old. That was all I could take.
I get up every morning and watch my entire family falling apart. I can’t take any of this away from them. If I could trade places with any of them I would in a heart beat. I want to be able to carry the burden for them so they don’t have to. Instead I go through each day depressed and feeling helpless most of the time because there is nothing I can do. I wonder what my kids ever did to deserve this. My wife went through 10 years of hell to protect Gavin. She won’t even take her pain meds because she feels like a burden and is worried about me. Why does she have to go through this? She has given so much to all of us.
As a husband and father I feel like a complete failure because there is nothing I can do to change any of this for them. I know it’s not rational to feel this way but none of this is rational. Father’s are supposed to shield their kids from pain and suffering and I can’t even communicate with my youngest. When he cries all I can do is guess at what’s wrong. Gavin is so far gone, honestly, we are lucky to still have him in our home with us. As much as I try to protect it, Elliott Richard is losing his childhood.
As insane as it sounds, I should be able to shoulder these burdens for them. I would do anything to give my wife just one day pain free. I wish I could make. Friend appear for Gavin that accepts him for who he is. I wish I could make sure Elliott Richard has the kind of childhood I had growing up. I wish I could know what Emmett John was thinking and feeling so he could be at peace during the day. I was everything wasn’t such a struggle for him. I want him to have a chance at a “normal” life. I want them all to have “normal” life.
There is nothing rational about being a father or even a husband. We feel things very deeply when it comes to our kids and there is little room for logic when our kids are suffering. We just want to make it stop so they smile again. You might never see the outward signs of my internal struggle but it’s there. Beneath the hardened exterior I’m crying for my family.