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When they both need us.

2012-08-27_1346030372@0“You love them differently and you give the most love to the one that needs it at the time.” Martin Sheen

I was watching an interview with Martin Sheen a long time ago, who was promoting son-director/actor Emilio Estevez’ movie The Way, and the interviewer asked Martin about son Charlie Sheen’s very public breakdown at the time.

It resonated with me because I’ve often felt this way. Through the entire time of Gage’s bout with suicidal thoughts and actions we were preparing our daughter’s for her transplant and advocating for her to have a transplant before she was forced on dialysis. This was no small feat in our city, which had (or still has?) processes in place that fight against a child getting a preemptive transplant.

I don’t know how we survived it all except that we just had to muddle through it because both the kids needed us greatly at the time. I often felt guilty for the attention the other one needed at the time but none of it could be helped because their needs were both great.

I wish that it were as easy in our world to focus on one need at a time and I suppose at one second (technically) it’s true, we can only advocate for one child at a time, but the advocating happens nearly simultaneously. And it’s all Big and it’s all Important. We’re always feeling we’ll let something slide.

We always discuss The. Next. Big. Thing. We’ve not had to deal with serious liver issues even though they are a part of their disease. But that was okay because we had enough to deal with for mental health, education, kidney function monitoring/illness and getting back to (our) normal. We had a liver appointment over the summer and things are “guarded.”

Our hope is that their liver issues won’t impact them for a while and that transplants won’t be required for years (young adult?) but we don’t know. That is the thing about a chronic illness, a progressive disease that you have to watch. And wait.

There’s lots of waiting.

We wait for the time bombs living inside them controlling how their lives play out and pushing us to support one or both of them. In this case, they both need us and so we’ll move forward with figuring out what the next step is in care. It could be that we have more watching and waiting (likely) or it could be that the doctors want biopsies or more monitoring. It could be anything.

I’ve been sad about facing the liver stuff and I don’t know why. Perhaps it is because we’ve been generally body health stable although we have been dealing with increased mental health issues. It’s been nice to think about what we have been through successfully because it’s behind us even though it is truly never behind us, as you know.

One thing with having two kids with a disease is that they both truly need all of our attention all the time. I’ve learned that The Next Big Thing could be a number of issues, for this week it’s mental health. Next week it’s dermatology for skin issues as a result of immunosuppressants and the week after that it is a teen clinic working towards transition to adulthood and the month after that special needs dentistry and labs a couple of times a month thrown in there for good measure!

Today, I’ve set some other appointments and taken care of some insurance reimbursement issues and a couple of appointments for me (that self-care thing, you know!)  and I was overwhelmed for a few minutes. That’s a problem though because they both need us at the same and we don’t have time to be overwhelmed or for losing ground. Probably always good to remember they are all Big Things.

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One Comment
  1. October 29, 2015 | Reply

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