I should preface this by stating that I harbor no resentment or hard feelings about the following. I've learned to accept this as God's will. I sincerely love David for who he is, and understand that he is controlling his illness to the best of his ability.
One of the biggest struggles I've had since the onset of David's illness is the times when I feel like a single parent. Most often this occurs when there is an event that we need to attend. For example a birthday party, a school function, a t-ball game, etc. While he doesn't miss all of these, he's missed more than he's attended. This stems from his social anxiety. If he is not feeling well, it is very difficult for him to be in a social setting that includes lots of activity or people, as he becomes over-stimulated.
In the beginning, I would get pretty upset feeling as though I had to do everything on my own and that he was missing out on our daughter's childhood. I didn't want him to look back years from now and regret not being there. However, as time passed, I realized that I was just making things worse by forcing the issue.
For one, he felt guilty enough and didn't need me adding additional stress. Secondly, his health deteriorated when he was in an overly stressful situation. So I had to ask myself what was more important: David being at every event even if by force, or his overall health. I'm sure you can see that the decision wasn't really that hard for me.
The problem then came from the outside. Friends and family with whom we hadn't shared the full extent of his condition, or just didn't understand (believe me that's the hardest part) asked where he was. Or they gave me the look that said "really? He can't come to a t-ball game?" I wanted to scream and say, "Yes, really! He also didn't get out of bed yesterday, and only ate because I forced him to! He hasn't left the house in the three days, and I'm sick to my stomach with worry. Back the hell off!" But I didn't because they didn't know, so I put on my let's-pretend-everything's-okay smile and went about my day.
I record any functions that he really would prefer to attend, like K's Christmas program last year, and we watch them together as a family so he doesn't feel left out. I've gotten used to going to things by myself and usually don't feel alone because of the family and friends in attendance.
Something I'm still trying to work through is missing out on adult social functions, like get togethers with friends, or concerts I've had a ticket to for months, because not only is he not up to going, but he's not feeling healthy enough to be alone. I won't lie, this gets hard. I'm still bummed about the Sugarland and Katy Perry concerts and the numerous barbecues and game nights I've missed. But again, I can't go back and change that, nor can I ensure it won't happen again. I've chosen what's more important to me, which will always be my family and our health.
I'm certainly not looking for pity as I have been very blessed. There are so many people with far bigger problems, that it would be disgraceful for me to feel unhappy with my life. I know a family who lost their 18-month old daughter to a horrific battle with cancer and another who lost their husband and father to his second battle with cancer. My husband and daughter are still here for me to love and spend all of my days with. I couldn't be more thankful for all of my blessings.
Pray, Hope, & Don't Worry ~ St. Padre Pio