Sometimes I wish I was a better person. But, I’m not. I am who I am and where I am, whether I like it or not. Today, I must confess, I skipped church not because I didn’t feel well (as has been the case a lot this year) but because I just wasn’t in the mood for Mother’s Day.
I don’t have children, and all my “mother-type” relationships these days are a bit strained at best. I wish I could have focused on the times when that wasn’t the case. I wish I could have been more grateful for the past, for all the things my mother and my grandmother have done for me (it’s quite a list) and for those times when we were close. I wish I could have looked around the sanctuary at all the moms and been happy for them.
But, some days I’m just not in the mood to fake it. Bah-humbug on motherhood (no – I don’t mean that – it’s just an emotion.)
Whether we’re in good health, or going through a tough patch, Hermansky-Pudlak Syndrome often takes a toll on our lives in ways that might not always be seen by the outside world.
For me, it’s more than likely stolen motherhood.
We all like to think that tough times only make our relationships stronger, but the truth is if there’s any fracture at all, any strain, any wound – often tough times only put more pressure on the cracks and eventually things just crumble.
Earlier this week I came to the conclusion that one of my HPS friends has passed away. I’ve tried and tried to reach him to tell him about some research developments that might be helpful to him. He’s very sick with the pulmonary fibrosis of HPS and trying to get a transplant. But, when the e-mails, phone calls and now even snail mail letters all were never answered, I can only conclude that he’s passed away. The research developments I was so eager to share came only months too late.
My mother and I had a nice chat on the phone – nicer than we often do. But, we were careful to avoid certain lines of conversation. Even though I was feeling a little emotional about HPS, I worked hard at not mentioning it. I definitely didn’t mention my friend. It would only lead to bad feelings when she didn’t respond the way I needed her to respond. The closest I got was whining about how my meds are messing with my head.
I was worried about my mom because of the terrorist threats in the news against U.S. military overseas. My mom doesn’t live on a military base, but rather in the German community. I wanted to know what steps were being taken to protect her security and whether she felt safe.
She told me about her weekend trips going to flea markets and antique shops, decorating projects etc. There was a time when I would have enjoyed that topic as much as she does – but not anymore. These days I’m way too serious. Decorating is something that requires a mixture of money and time – and I don’t have either. But, at least it was a “safe topic.”
There was a day when every topic was “safe.”
HPS hasn’t just impacted my relationship with my mother.
Of course you never know what God’s plan is, but it seems very unlikely I’ll ever have children. It isn’t because people with HPS can’t have children. It’s because one requirement to being in a drug trial with an experimental medication is that you don’t get pregnant.
One sign that men and women think differently about things is that the male doctors at NIH, all of whom I love very much, just sort of glossed over that point in the consent form. I don’t think they even thought about what they were asking of me. Even though I’m not married (not even close), that was still a huge point for me. I’m 33 years old. This trial could drag on for years. By the time this research is finished, I might not be able to have children.
Don’t get me wrong. I happily signed the form. I’m extremely grateful to be able to be in the trial. It’s a price I was willing to pay, but there are times, like Mother’s Day, when it seems to nag at me more than usual.
I just couldn’t face a sermon about Motherhood, no matter how much effort was made to include all women. I didn’t want some little kid to hand me a flower even though I’m not really a mom just because I’m a grown up lady.
I know I’ve got a bad attitude. What can I say? I’m human, and today maybe a little more human than usual.
I don’t have children, and all my “mother-type” relationships these days are a bit strained at best. I wish I could have focused on the times when that wasn’t the case. I wish I could have been more grateful for the past, for all the things my mother and my grandmother have done for me (it’s quite a list) and for those times when we were close. I wish I could have looked around the sanctuary at all the moms and been happy for them.
But, some days I’m just not in the mood to fake it. Bah-humbug on motherhood (no – I don’t mean that – it’s just an emotion.)
Whether we’re in good health, or going through a tough patch, Hermansky-Pudlak Syndrome often takes a toll on our lives in ways that might not always be seen by the outside world.
For me, it’s more than likely stolen motherhood.
We all like to think that tough times only make our relationships stronger, but the truth is if there’s any fracture at all, any strain, any wound – often tough times only put more pressure on the cracks and eventually things just crumble.
Earlier this week I came to the conclusion that one of my HPS friends has passed away. I’ve tried and tried to reach him to tell him about some research developments that might be helpful to him. He’s very sick with the pulmonary fibrosis of HPS and trying to get a transplant. But, when the e-mails, phone calls and now even snail mail letters all were never answered, I can only conclude that he’s passed away. The research developments I was so eager to share came only months too late.
My mother and I had a nice chat on the phone – nicer than we often do. But, we were careful to avoid certain lines of conversation. Even though I was feeling a little emotional about HPS, I worked hard at not mentioning it. I definitely didn’t mention my friend. It would only lead to bad feelings when she didn’t respond the way I needed her to respond. The closest I got was whining about how my meds are messing with my head.
I was worried about my mom because of the terrorist threats in the news against U.S. military overseas. My mom doesn’t live on a military base, but rather in the German community. I wanted to know what steps were being taken to protect her security and whether she felt safe.
She told me about her weekend trips going to flea markets and antique shops, decorating projects etc. There was a time when I would have enjoyed that topic as much as she does – but not anymore. These days I’m way too serious. Decorating is something that requires a mixture of money and time – and I don’t have either. But, at least it was a “safe topic.”
There was a day when every topic was “safe.”
HPS hasn’t just impacted my relationship with my mother.
Of course you never know what God’s plan is, but it seems very unlikely I’ll ever have children. It isn’t because people with HPS can’t have children. It’s because one requirement to being in a drug trial with an experimental medication is that you don’t get pregnant.
One sign that men and women think differently about things is that the male doctors at NIH, all of whom I love very much, just sort of glossed over that point in the consent form. I don’t think they even thought about what they were asking of me. Even though I’m not married (not even close), that was still a huge point for me. I’m 33 years old. This trial could drag on for years. By the time this research is finished, I might not be able to have children.
Don’t get me wrong. I happily signed the form. I’m extremely grateful to be able to be in the trial. It’s a price I was willing to pay, but there are times, like Mother’s Day, when it seems to nag at me more than usual.
I just couldn’t face a sermon about Motherhood, no matter how much effort was made to include all women. I didn’t want some little kid to hand me a flower even though I’m not really a mom just because I’m a grown up lady.
I know I’ve got a bad attitude. What can I say? I’m human, and today maybe a little more human than usual.
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