As mentioned previously, Lizze and I had our third session of marriage counseling yesterday. The boys hung out with their grandparents while we were there.
The main topic of this appointment slowly became Gavin. Lizze and I are really struggling with Gavin lately and not for the reasons you might suspect.
We’re struggling with things from a mortality perspective.
I don’t talk about this very much because the more I talk about it the more real it becomes. The truth is, we don’t know how long Gavin has on this Earth. His health is continuously worsening and new problems keep popping up. Some of the health issues are beyond rare and so no one knows for sure what to expect.
What I know for sure is that his speech is getting damn near impossible to understand, even for us. His body just seems to be falling apart. His joints all pop and his legs are frequently giving out on him as well. He can’t remember things anymore at all and has lost many previously mastered skills. His grip on reality is all but gone and he spends most of his day engaging with his hallucinations.
It’s really difficult to express how horrible this all is.
This ended up being the main topic of our appointment yesterday. The reason was because of how deeply this impacts us as parents and how much stress/anxiety we feel on a daily basis. Coming to terms with all this is something that we have to eventually do.
Anyway, the appointment was both physically and emotionally exhausting. On the positive side of things, we opened up about all this and that’s not something either of us do very often. It feels like if we talk about it, this whole thing becomes more real and that’s a very painful realization.
As we move forward in marriage counseling, we are going to work on better dealing with this whole Gavin thing. It’s not going to be easy but it’s something that really needs to happen because this is something that we need to face.
Thank you for your continued encouragement for spouses to hang in together. I know that you and Becky are a gift to Gavin in ways he can’t express and so of which you are not immediately aware and from which you don’t get some of the “normal” strokes of parenting. I hope that the counseling continues to bear fruit for your relationship.
At one autism conference I attended, a workshop was led by a medical center’s grief counselor. He made the point that with autism (and most disabilities) a grief process gets underway early, as we mourn lost hopes and dreams (didn’t get to throw a football with our guy, and now I can’t put my feet up and make him do all the chores, among other losses). So the grief is likely acute with Gavin’s health and mortality, but you’ll probably find it is part of a long mourning that’s been more subtle.
On a personal note, I lost an older brother to cystic fibrosis. The loss of their son did great harm to my parents’ marriage – they didn’t divorce, but all kinds of other havoc played out on them and thus on the whole family. Glad you two are taking care of each other.
Thanks Timothy.. Lizze and I have been through a great deal together over the years. It’s not an easy job but we were working very hard to make sure we take the time to take care of ourselves and each other… ☺
Reality can really suck. I spent a lot of time crying over Henry, as he has fibromyalgia worse than mine. Jacob is pretty functional with his autism and can work, so I can hope that my sons have each other.
I hope Gavin lives as long as he can enjoy life.
Thank you for your continued encouragement for spouses to hang in together. I know that you and Becky are a gift to Gavin in ways he can’t express and so of which you are not immediately aware and from which you don’t get some of the “normal” strokes of parenting. I hope that the counseling continues to bear fruit for your relationship.
At one autism conference I attended, a workshop was led by a medical center’s grief counselor. He made the point that with autism (and most disabilities) a grief process gets underway early, as we mourn lost hopes and dreams (didn’t get to throw a football with our guy, and now I can’t put my feet up and make him do all the chores, among other losses). So the grief is likely acute with Gavin’s health and mortality, but you’ll probably find it is part of a long mourning that’s been more subtle.
On a personal note, I lost an older brother to cystic fibrosis. The loss of their son did great harm to my parents’ marriage – they didn’t divorce, but all kinds of other havoc played out on them and thus on the whole family. Glad you two are taking care of each other.
Thanks Timothy.. Lizze and I have been through a great deal together over the years. It’s not an easy job but we were working very hard to make sure we take the time to take care of ourselves and each other… ☺
Reality can really suck. I spent a lot of time crying over Henry, as he has fibromyalgia worse than mine. Jacob is pretty functional with his autism and can work, so I can hope that my sons have each other.
I hope Gavin lives as long as he can enjoy life.