Sometimes I feel normal. I send my kid off to pre-school, watch him play at the park, help him learn how to share and take turns, go out for dinner and apologize for all the food on the floor. We've been to a protest rally, a wedding, and trick or treating all within a month.
I work on my relationship with my partner. We have date night. She brings home the bacon and I watch how we spend it. Simon is growing. Jaime and I are loving each other. We are a family in process. It sometimes feel normal.
And in those moments I feel awful. Like a fake. Really split into two people. It's an amazing feeling to have gotten to this place given where we've come from. AND I feel almost ashamed of it. The help that we've received, the path that Simon's disease has gone, it's not that I don't want it but more than a little bit "I can't believe that we've been this fortunate when there are so many others that are not."
And it's not the amorphous "other". It's families that we know, that we see all the time. I remember feeling it each time we hung out with families that had typical, healthy, babies. I wanted 'that' kid. Not one different from Simon but I wanted Simon to be that kid. There are days/ hours when he almost feels like that kid now and I don't quite know what to do with myself. Who am I if not the mom of a medically fragile, immuno-compromised child, whose life is full of medical and therapy appointments? What does that make me?
And who the fuck am I to even whine just a little about losing that piece of my identity that so many other parents would give up in a heartbeat.
And still, Simon will live with Cardiomyopathy for the rest of his life, hopefully the way he is living and thriving along side of it right now. But, what and who does that make me?
I was telling Jaime that come this March, I will not have 'worked' for 4 years. That's a long time to not do something that I've done since I was 13 and started restocking candy at Tom's Stationary store just up the street from our apartment in the Bronx.
There's the me that has been so focused on Simon, and doing everything in my power to give him all the chances at getting better. I have been eagle eye focused for almost 4 years now. I got as prepped as I could for labor and delivery, I cared for a newborn, I sat vigil while he fought for his life in the ICU, I learned to draw his meds and work out tummy time in the hospital, I went to appointment after appointment after appointment. I talked and talked out loud until I thought the sound of my own voice might drive me nuts trying to work on language delays. I massaged feet and calves to stimulate blood flow to get him crawling then walking. I cleaned up barf.
I cleaned up so much barf.
I gave meds, tube feedings, more meds and then some tube feedings.
Then I cleaned up some barf.
I know there's something along the lines of what I'm talking about for most typical parents too AND it's a little different when you've got a kid with something a little extra going on. This is the "what will I do now that my kid is off to pre-school/college" plus a whole lot more.
Where's my "Housewives of Medically Fragile Kids Who Then Get Better" reality show?
And what about this whole complaining bullshit? I know I am blessed. I know there are moms and dads out there that would give their left whatevers to have come to where we are with the support we have.
Jaime called it. I have survivors guilt. It doesn't do me any good. It doesn't serve anyone.
And I have it.
For all the families that have lost Littles... For all the families whose lives are infinitely harder and do not come with built in networks of support... For those families that have children that do not have the option of having such an upswing....
It's similar to the first time that I really felt my privilege as white person. I got schooled for saying "I don't want it." That's a lie I could tell myself to feel better about it. But what's really true about it is, I do. I don't want to be treated less than. No one does. What I do want is for everyone to have it and that's not the case right now. White Privilege is systemic and while I may not have enough power or privilege to change institutionalized racism all by myself, my work is to keep recognizing places where it shows up for me and not others and work on what I can to change that. I know there's all kinds of privilege and oppression. I'm just talking about this one and just my experience.
This new-age-of-Simon kind of privilege is a little different. I can clearly say that I want it. I want Simon to have the privilege of thriving as he is today but there is no system for me to work to dismantle that doesn't offer the same chance to so many others. It's 'luck' or 'providence' or 'God'- whatever you want to call it. It's not based on merit, or skin color, or $$ in the bank. It's just how the waves keep coming and right now it's one that is taking this family on a sweet sweet ride.
It's like when Anina passed. I didn't know what do to with myself.
That's how I felt the other day walking down the street. Simon was in school, I had time to myself, no one could look at me and see me as the mother of a kid with cardiomyopathy and then...I thought 'I almost can't see me as the mom of a kid with cardiomyopathy'.
That was weird.
For so many reasons (since I was only an hour away from giving a medication and tube feeding)....but I felt it.
There is so much going on right now, in terms of struggle and working for justice. It feels strange to be moving a little further from my own struggle. But then, it is almost Thanksgiving so I will up the ante on the amount of thanks I put out there.
We've come so far from the ICU, even from those months and months of several therapies and medical appointments every week. It's a separation. It's not exactly painful but it's change. I'm a Taurus. Most change is hard for me. As spectacular as the specifics are...it's still change.
Riding the wave.
I work on my relationship with my partner. We have date night. She brings home the bacon and I watch how we spend it. Simon is growing. Jaime and I are loving each other. We are a family in process. It sometimes feel normal.
And in those moments I feel awful. Like a fake. Really split into two people. It's an amazing feeling to have gotten to this place given where we've come from. AND I feel almost ashamed of it. The help that we've received, the path that Simon's disease has gone, it's not that I don't want it but more than a little bit "I can't believe that we've been this fortunate when there are so many others that are not."
And it's not the amorphous "other". It's families that we know, that we see all the time. I remember feeling it each time we hung out with families that had typical, healthy, babies. I wanted 'that' kid. Not one different from Simon but I wanted Simon to be that kid. There are days/ hours when he almost feels like that kid now and I don't quite know what to do with myself. Who am I if not the mom of a medically fragile, immuno-compromised child, whose life is full of medical and therapy appointments? What does that make me?
And who the fuck am I to even whine just a little about losing that piece of my identity that so many other parents would give up in a heartbeat.
And still, Simon will live with Cardiomyopathy for the rest of his life, hopefully the way he is living and thriving along side of it right now. But, what and who does that make me?
I was telling Jaime that come this March, I will not have 'worked' for 4 years. That's a long time to not do something that I've done since I was 13 and started restocking candy at Tom's Stationary store just up the street from our apartment in the Bronx.
There's the me that has been so focused on Simon, and doing everything in my power to give him all the chances at getting better. I have been eagle eye focused for almost 4 years now. I got as prepped as I could for labor and delivery, I cared for a newborn, I sat vigil while he fought for his life in the ICU, I learned to draw his meds and work out tummy time in the hospital, I went to appointment after appointment after appointment. I talked and talked out loud until I thought the sound of my own voice might drive me nuts trying to work on language delays. I massaged feet and calves to stimulate blood flow to get him crawling then walking. I cleaned up barf.
I cleaned up so much barf.
I gave meds, tube feedings, more meds and then some tube feedings.
Then I cleaned up some barf.
I know there's something along the lines of what I'm talking about for most typical parents too AND it's a little different when you've got a kid with something a little extra going on. This is the "what will I do now that my kid is off to pre-school/college" plus a whole lot more.
Where's my "Housewives of Medically Fragile Kids Who Then Get Better" reality show?
And what about this whole complaining bullshit? I know I am blessed. I know there are moms and dads out there that would give their left whatevers to have come to where we are with the support we have.
Jaime called it. I have survivors guilt. It doesn't do me any good. It doesn't serve anyone.
And I have it.
For all the families that have lost Littles... For all the families whose lives are infinitely harder and do not come with built in networks of support... For those families that have children that do not have the option of having such an upswing....
It's similar to the first time that I really felt my privilege as white person. I got schooled for saying "I don't want it." That's a lie I could tell myself to feel better about it. But what's really true about it is, I do. I don't want to be treated less than. No one does. What I do want is for everyone to have it and that's not the case right now. White Privilege is systemic and while I may not have enough power or privilege to change institutionalized racism all by myself, my work is to keep recognizing places where it shows up for me and not others and work on what I can to change that. I know there's all kinds of privilege and oppression. I'm just talking about this one and just my experience.
This new-age-of-Simon kind of privilege is a little different. I can clearly say that I want it. I want Simon to have the privilege of thriving as he is today but there is no system for me to work to dismantle that doesn't offer the same chance to so many others. It's 'luck' or 'providence' or 'God'- whatever you want to call it. It's not based on merit, or skin color, or $$ in the bank. It's just how the waves keep coming and right now it's one that is taking this family on a sweet sweet ride.
It's like when Anina passed. I didn't know what do to with myself.
That's how I felt the other day walking down the street. Simon was in school, I had time to myself, no one could look at me and see me as the mother of a kid with cardiomyopathy and then...I thought 'I almost can't see me as the mom of a kid with cardiomyopathy'.
That was weird.
For so many reasons (since I was only an hour away from giving a medication and tube feeding)....but I felt it.
There is so much going on right now, in terms of struggle and working for justice. It feels strange to be moving a little further from my own struggle. But then, it is almost Thanksgiving so I will up the ante on the amount of thanks I put out there.
We've come so far from the ICU, even from those months and months of several therapies and medical appointments every week. It's a separation. It's not exactly painful but it's change. I'm a Taurus. Most change is hard for me. As spectacular as the specifics are...it's still change.
Riding the wave.
Moses and Simon are starting a new band
Band love
Hugging Mommy before her annual dip in the Ocean
Scuba man
Wonderful Family at the Celebration of Life Dinner
Trumpets are nice but drums are where it's at man
I like the ending on this one
and when he stands up and kicks his stool back on this one
