My younger brother is getting married this weekend. Tim and Jenna make an amazing couple and we welcome Jenna to the family with open arms.
Lizze and I are both so happy for them and support them completely.
Sadly however, we will be unable attend the wedding. Things for my immediate family – Lizze, Elliott, Emmett, Gavin and myself- are not going so well.
Lizze is in the worst place she’s been in since her whole health crisis began many years ago. There is absolutely no way she could physically handle going to the wedding. The lights, smells and noise would simply be to much for her.
Gavin doesn’t live with us anymore and Elliott and Emmett are already struggling enough right now without being overstimulated by everything they would be experiencing there.
Honestly, Lizze and I barely barely surviving without them being overstimulated.
I’m not comfortable leaving Lizze with the boys, just so I could go. It would be unfair to Lizze and the boys.
I’ve made this statement a few times in the past but I feel I should say this again. The Lost and Tired family is in survival mode.
What does survival mode mean?
Basically, we are functioning on instinct. We don’t look to the future or make plans because our main goal it to simply survive everything we are living through. Many times we live from minute to minute or second to second.
I know that many of you understand what I’m talking about.
It’s extremely difficult for me to help people to understand just how bad things are for us right now. I don’t think that you can truly appreciate this unless you’ve lived it yourself.
Right now, my only priority is hold my crumbling family together. I feel like we’ve already lost Gavin and with Lizze’s health continuing to worsen and Emmett continuing to regress, I honestly can’t worry about anything else. Poor Elliott is an emotional mess and needs all the calm peaceful experiences we can give him.
As Lizze and I became more and more aware of what special needs parenting entails, we realized that making plans was a luxury we may never have.
Anytime we try and make plans, something always comes up and we can’t make it. People are inevitably disappointed and we feel guilty. We don’t need anymore guilt in our lives, we just had to move our 12 year old son out of our house, trust me, we already have more than our share as it is.
I wish there was a way that I could allow people to walk a mile in my shoes. I think that’s the only way they will ever understand.
My family empathizes with us but still can’t truly appreciate the pain, guilt and utter exhaustion we live through, every minute of every day.
To them, they don’t really see a reason that I can’t make it to the wedding. They mean well, they truly do. It just that becomes more and more clear that I’m not explaining our situation well enough.
I think that when I not only became a parent, but a special needs parent, my priorities shifted and became more narrowly focused. At the end of the day, I have to do what’s best for my family, even at the risk of upsetting others. The wellbeing of Lizze and the boys are my only priority and I don’t need to justify or even qualify that to anyone.
I wish that there was a better way of doing this but unfortunately, there’s isn’t.
At least for now.
On my immediate side of the family, the only person that ever really reads my blog is my mother. On Lizze’s side of the family, it’s basically her mother as well.
I have feeling like we are disappointing everyone. I just can’t afford to worry about that anymore.
Do any of you experience anything similar? How do you handle it, what do you say?