I wanted to share with all of you how life has been recently, at least from my perspective. Something that I think is important to understand is that there are always multiple perspectives to things.
Everyone in the my family has a perspective, this is simply mine.
It’s no secret that we are going through a really hard time. Between everything that Lizze and Gavin have going on, life is made infinitely more complicated. It’s not their fault but the reality is that when anyone inside of a family is going through something, everyone in the family is affected.
With Lizze, it’s heartbreaking to watch her go through everything that she’s going through.
She’s in constant pain, both physical and emotional. At this point, there is very little that we can do about either. Everything is so intertwined that teasing out individual symptoms is not possible yet.
She’s 33 years old, lives in chronic pain, is in menopause and sleeps for the majority of the day because her symptoms keep her up at night. Hypersomnia makes it so that her body needs more than twice the amount of sleep that the average adult requires.
She’s been dealing with PTSD for so long that it’s morphed into Borderline Personality Disorder. This is a direct result of living a life filled with trauma.
She has years and years of intensive therapy ahead of her if she has any hope of recovery. No one deserves this, especially someone who’s already been through so much.
Gavin’s is another complicated member of our family.
His health, both mental and physical, has deteriorated to the point where we find ourselves making decisions for him based more on quality of life than quantity.
There are no words to describe what it feels like to watch your child go through something this profound. There’s is absolutely nothing we can do at this point because no one has seen a child like Gavin before. We can try and manage the most life threatening conditions but try is the operative word.
I feel like everyday we get with Gavin, while unbelievably challenging, is a gift.
Elliott and Emmett are each going through things of their own.
Elliott is struggling with life right now and we aren’t exactly sure why. He doesn’t like talking about his feelings and he feels things very intensely.
His biggest challenges from my perspective revolve around extreme anxiety and sensory related food proclivities. Getting him to eat anything is very, very challenging.
Emmett has come a long way from the angry, frustrated little boy with Autism that couldn’t talk.
However, we’ve been seeing the return of problem behaviors over the last year or so. He’s become more and more aggressive. He’s a very intense perfectionist about everything in his life. Wearing clothes has become a battle once again because he’s no longer tolerating them as well anymore.
As a father and husband, it’s my job to hold everyone and everything together, despite the challenge.
The problem with this is a simple one. How can I possibly hold everyone and everything together, especially by myself?
The solution is far less simple and something I have yet to actually figure out. All I can do at this point is do my best. Unfortunately, my best isn’t even close to good enough because along the way, we lost quite a bit. Our financial security for one thing and that’s had a huge ripple effect, leading to the loss of our only means of transportation.
That’s a huge fail on my part and one that weighs very heavy on me.
While I’m doing okay, at least by comparison, I’m battling my own demons as well. Guilt is a huge burden for me. I feel guilty for everything I can’t accomplish and for what I’m unable to improve.
Depression is my biggest personal battle right now. I’m being treated for it but being depressed makes everything in life a bit more challenging for me.
At the end of the day though, we’re all still here. We’re all still kicking.
Perhaps that’s a victory in and of itself.
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In life sometimes we have to take the good with the bad, the glad with the sad, and the happy with the crappy. It seens right now you are being hit with a lot more bad than glad and for that I am truly sorry.Your whole family is in my thoughts and prayers. Keep your head up.
Wise words. Thank you kindly. 🙂
My heart goes out to you. You need to find somebody to lean on. Do you have a church, synagogue or other support community you are a part of that you can ask for help? Failing that do you have close friends or family that can help ? My wife and I only have one mildly autistic 7 year old with PDD (our other 4 children have various degrees of ADHD and tourettes) and we couldn’t make it without the Lord Jesus and our church family. You are and have been in my prayers since I began reading your blog.
Thank you so much. While we don’t have a church, we do have at least some of our family involved. We also have the enormous community that’s been built around this site and that’s a tremendous amount of support.
Thank you so much for the prayers. I truly appreciate it my friend. 🙂