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.
LT
I read your blog religiously because what you and your family are going through is so similar to mine. My husband can identify with everything you write as can I. We say the same things, that we would give our lives up, just so that our Maxie could be normal. Max was born normal and aside from the severe autism, he is the healthiest kid I know. He has severe sensory issues, suffers from PICA, ADHD, non-verbal, etc.. He has some pretty messed up dental issues because he was constantly regurgitating his food. (that is a behavioral issue as well, he know how to throw up on cue, so he does).. But he has never had one ear infection or serious illness. He has put some of the craziest and scariest things in his mouth, but aside from some diarrhea, he has never been rushed to the hospital because of something he ingested. Sometimes we think his immune system is working overtime because we are amazed that he isn't sicker.
All this to say that it kills my husband, because he looks at his strong son and still an all, cannot go out and throw a ball or play football with him. My husband can't watch little league games or go to parks and see children playing because he starts to cry because he knows he won't see Max make friends, get married, have children, etc… Max is in his own world.. He laughs 80% of the time and cries the other 20%…. either way, it's hard to communicate why he is doing either.
As I mother, I have prayed, offered myself to the devil if I could, just so that Max could be OK. I suffer from depression but I know I have to keep pushing myself. My husband also suffers from the depression, but he is much better at keeping it to himself. We are both law enforcement officers, so we can't afford to let our emotions get the better of us. But raising Max is the hardest thing I will ever do in my lifetime. It's hard, heartbreaking, backbreaking, maddening, you name it…
But for the fathers like yourself, it is probably worst, because my nature, you are the protectors and like most men, I am sure, you feel like your job is to make it all better… But you have to realize that you do, by virtue of being the man you are to your wife and your children.
Take Care.
Thank you. I think father's have an unrealistic expectation that they can protect them from everything. When something slips through we want to fix it. As you say it can be maddening because there is no way to win that game of emotional tug of war with yourself. As a fire/medic it was my job to save people and I was good at my job. But it often makes things harder because I think I should be able to make them better. I agree there is parallel between our lives.
Thank you for sharing your story again. Please take care and stay safe.
Clearly, many thanks for the information.