I previously blogged about my thoughts on birth control and why it was medically necessary for me. Now that I've had a hysterectomy, I no longer have to worry about those issues--for myself, anyway. Unfortunately, I find myself confronted by an even larger worry looming on the horizon--how birth control options and access, and abortion restrictions will affect my daughter. Yes, I know, she's only 3 (almost 4). I can hear your incredulity. However, I want to talk about this because I want to provide another perspective to the social discussion on sex, birth control, and abortion--one that highlights why this issue is much more complex than many of the people making the decisions about it are considering.
So, why am I talking about birth control and abortion with respect to my preschooler? First, because I started menstruating at 9, so we are easily a mere five years away from her being able to get pregnant. Do I anticipate her having sex at that age? Heck no! But, I am a realist and know it happens--my mother taught a 7th grader with three children! I will do what I can to educate her and impress upon her that the repercussions of this decision is even more weighty for her than her peers. Nevertheless, I cannot control the world, so I have to consider that she could be sexually assaulted, like I was at age six.
I imagine you are thinking, "But that's true for everyone. What's the big deal?" The big deal is, for most people, pregnancy is not a death sentence. Given her unique anatomy and PAH, a pregnancy will likely kill my daughter. Her body won't be able to handle the increased blood flow and lung function necessary for a baby to grow, let alone tolerate labor and birth. And, even if she somehow survived pregnancy, the medications she takes for her heart condition are contraindicated for pregnancy; indeed, one of them is a black box drug that causes severe birth defects. Unfortunately, it also cannot be used in conjunction with hormonal birth control.
Given that most states are passing abortion restrictions that don't include rape or health of the mother exceptions, I cannot simply hope that it won't happen to her. Under these conditions, I feel I must take a proactive approach to keep her safe. So, how do I protect my daughter? Since hormonal birth control is out, and most of the other forms require reliance on the other party or aren't effective enough, in my opinion, when death is the alternative, I will likely get her an IUD. The only other more effective alternative would be to sterilize her and that's not going to happen--medicine advances all the time, and it's possible something could change in the future that would make her able to safely carry a pregnancy. Given my own struggle with infertility, I am not going to do that to her.
I get how crazy it is to be talking about getting an IUD for my child. Still, I can't think of any other acceptable options. Not when the alternative--whether by mistake or violation--is a death sentence. I'm not telling you all of this to get you to change your beliefs or your position on these issues. Instead, I'm simply offering you the background to understand why my position is pro-access, pro-choice.
10.27.2014
On the Oddities of Grieving
Grief is strange. There is simply no other word to describe it. It hits at odd times, in ways you do not expect. Sometimes, the things that set you off make sense, but other times, there is simply no rational explanation for how you are feeling. Every day is different and you really can't prepare because you don't know what is going to happen. Sure, you expect sadness and difficulties on the "big" days--birthdays, anniversaries, etc.--but there's no way to know what will set you off, no way to know what things will make you feel as though, without them, you cannot function.
I have been going through Patrick's things and have had no trouble deciding which clothes to keep and give away--except for a few things. Oddly, the things I can't deal with right now are things that were 24-month clothes he was given but never had a chance to wear, so they still have the tags on. In theory, there is no sentimental reason to keep them--they aren't family pieces Mira wore, and he never wore them. So, why can't I part with them? Also, his bedding set--comforter, sheet, bumpers, bed skirt, diaper holder, curtain, clothes hamper--I have no attachment to any of it, except for the comforter. Why just the comforter, when Patrick never even slept under it? Whatever the reason, my current dilemma is whether to give all of the rest of it away without the comforter, or hang on to it until I am ready to part with the comforter so I can donate it as a complete set.
At the same time, Phil and I easily decided that we will turn the nursery into a playroom/family library. We have had no trouble giving away car seats and strollers and bouncy seats and various other bits of baby paraphernalia. I cannot fathom what the difference is, but I am trying to honor my feelings and just putting aside those things with which I am not yet ready to part and, hopefully, in time I will either understand why I need to keep them, or be ready to let them go.
Then there are the grief triggers--things that set you off that you weren't anticipating. Things like the crinkly paper at the doctor's office that Patrick used to love to roll on and tear up to hear the sound. The smell of a different deodorant than I usually use, which I bought in Detroit because I ended up there without my kit bag. The party supply catalog that comes in the mail advertising all the necessities for Patrick's first birthday party. The Amazon.com recommendations to purchase baby items because I have purchased them in the past. I have no doubt that Mira's trip to the cardiologist in two weeks will back tons of memories and feelings because we were last there only days before Patrick went back to Detroit for the last time. When you are grieving, life is like a Michigan road after a rough winter--full of potholes you don't see coming, can't avoid, and might put you out of commission for a few days. And it's not going to get easier. Next April, and indeed at least once a year for the rest of her life, we will have to take Mira to Detroit for a cardiology visit and will have to experience the hospital and see all of the doctors and nurses again.
Even so, there are things that bring me comfort--like sleeping curled up under Patrick's fleece froggy blanket, listening to "Happy," reading through the notes people left at the visitation and funeral, watching the videos of him on my phone, and looking at the amazing picture of him and his sister above the fireplace.
I don't understand and certainly can't describe or explain how my heart can feel so full and so empty at the same time, All I know is that I love my baby boy. My life is both brighter for having him in it, and duller for his having left it. I will forever be caught in the duality of gratefulness for our time together and frustration and anger at how short that time was.
I am also caught between wanting to shy away from all things CHD and knowing that I have to keep fighting because I still have a child with CHD. I find myself crying myself to sleep at night, fearful that her next trip to the cardiologist will reveal that her pulmonary pressures are increasing, meaning that the medications aren't working, which means a long, slow trip toward right heart failure and the eventual need for a heart/lung transplant. I reach over and stroke her hair, snuggle her close, give thanks for our time together, and try not to borrow trouble. But, with the wounds from Patrick so fresh, the trips to the doctor so frequent, and the medication reminders every day, it's a struggle. Like everything else, all I can do is take it one day at a time, one hour at a time, one breath at a time. In that way, grief seems a lot more like everyday life and feels more manageable. Here's hoping.
I have been going through Patrick's things and have had no trouble deciding which clothes to keep and give away--except for a few things. Oddly, the things I can't deal with right now are things that were 24-month clothes he was given but never had a chance to wear, so they still have the tags on. In theory, there is no sentimental reason to keep them--they aren't family pieces Mira wore, and he never wore them. So, why can't I part with them? Also, his bedding set--comforter, sheet, bumpers, bed skirt, diaper holder, curtain, clothes hamper--I have no attachment to any of it, except for the comforter. Why just the comforter, when Patrick never even slept under it? Whatever the reason, my current dilemma is whether to give all of the rest of it away without the comforter, or hang on to it until I am ready to part with the comforter so I can donate it as a complete set.
At the same time, Phil and I easily decided that we will turn the nursery into a playroom/family library. We have had no trouble giving away car seats and strollers and bouncy seats and various other bits of baby paraphernalia. I cannot fathom what the difference is, but I am trying to honor my feelings and just putting aside those things with which I am not yet ready to part and, hopefully, in time I will either understand why I need to keep them, or be ready to let them go.
Then there are the grief triggers--things that set you off that you weren't anticipating. Things like the crinkly paper at the doctor's office that Patrick used to love to roll on and tear up to hear the sound. The smell of a different deodorant than I usually use, which I bought in Detroit because I ended up there without my kit bag. The party supply catalog that comes in the mail advertising all the necessities for Patrick's first birthday party. The Amazon.com recommendations to purchase baby items because I have purchased them in the past. I have no doubt that Mira's trip to the cardiologist in two weeks will back tons of memories and feelings because we were last there only days before Patrick went back to Detroit for the last time. When you are grieving, life is like a Michigan road after a rough winter--full of potholes you don't see coming, can't avoid, and might put you out of commission for a few days. And it's not going to get easier. Next April, and indeed at least once a year for the rest of her life, we will have to take Mira to Detroit for a cardiology visit and will have to experience the hospital and see all of the doctors and nurses again.
Even so, there are things that bring me comfort--like sleeping curled up under Patrick's fleece froggy blanket, listening to "Happy," reading through the notes people left at the visitation and funeral, watching the videos of him on my phone, and looking at the amazing picture of him and his sister above the fireplace.
I don't understand and certainly can't describe or explain how my heart can feel so full and so empty at the same time, All I know is that I love my baby boy. My life is both brighter for having him in it, and duller for his having left it. I will forever be caught in the duality of gratefulness for our time together and frustration and anger at how short that time was.
I am also caught between wanting to shy away from all things CHD and knowing that I have to keep fighting because I still have a child with CHD. I find myself crying myself to sleep at night, fearful that her next trip to the cardiologist will reveal that her pulmonary pressures are increasing, meaning that the medications aren't working, which means a long, slow trip toward right heart failure and the eventual need for a heart/lung transplant. I reach over and stroke her hair, snuggle her close, give thanks for our time together, and try not to borrow trouble. But, with the wounds from Patrick so fresh, the trips to the doctor so frequent, and the medication reminders every day, it's a struggle. Like everything else, all I can do is take it one day at a time, one hour at a time, one breath at a time. In that way, grief seems a lot more like everyday life and feels more manageable. Here's hoping.
10.18.2014
Coming Full Circle--How My Hysterectomy and Complete Infertility Made Me Pregnant Again
Almost five years ago, on October 28, 2009, I wrote a note on my Facebook page that ultimately began this blog. This date sears my heart as I read it. All I have been through in less than five years: the struggles to get pregnant, miscarriage, failed IVF, two children, CHD diagnoses, open-heart surgeries, and the death of my baby boy. We are 11 days away from what would have been his first birthday--the same day that will begin year six of our journey: October 29, 2014.
These past five years have altered my life, and me, in ways I had never imagined. Back when we started, I honestly believed that just fighting to become pregnant would be the hardest thing I would ever have to face. Instead, it's moving forward as a family of three after having been a family of four. I am physically and emotionally exhausted. I was not prepared for this journey. I have been lucky for the support of friends, family, and my spouse. I know that each one of these challenges has tested and destroyed other marriages. That mine has survived all of them is something of a miracle, for which I am eternally grateful.
Speaking of miracles, we have been asked whether we believe in miracles and why we think Patrick didn't get one. Here's the thing. God did not look down and say, "Oh, it's the Hobsons, this can't happen to them, we'll fix it right away." That's not how it works. God does miracles in His own time for His own purpose, not on demand. And the truth is, we had tons of miracles already. Two successful rounds of IVF--miracle! Our daughter's health in spite of her serious CHD diagnosis and open-heart surgery--miracle! Patrick's birth--miracle! The surgeon's ability to unifocalize Patrick's pulmonary arteries without a patch during the first surgery--miracle! Ten months with the most adorable, cuddly, smiling boy--miracle! That Patrick died is not evidence of a lack of God's presence or the lack of miracles. It is not evidence that we did not believe hard enough, or that we sinned somehow. It is not evidence of failure or inadequacy. Patrick's death is proof of life. To paraphrase Braveheart: Everyone dies; the task before us is to truly live.
I am still figuring out how to do that. I am coping with survivor's guilt. There are so many things we are going to be able to do now that we couldn't do if Patrick had lived--like my return to work. But it's important that I find a way to move forward; to make my life meaningful. Because maybe, just maybe, Patrick did me a great honor. Maybe he sacrificed his time here so that I would not have to give up my career to become a full-time caretaker for him, so that we wouldn't have to split up the family, or potentially destroy the family we worked so hard to create. Figuring out whether this is true is not important. What is important is to figure out how to live authentically and honor Patrick's life as best I can with mine.
Which brings me back to my hysterectomy. I am now wholly and completely infertile. There will be no more children. That part of my life is irrevocably over. But I am not sad. I am completely at peace. Not only am I finally free of the physical pain and suffering my conditions caused me, I am free of worry, free of monthly reminders, free to take all of the energy that has been tied up in these other things and channel it into--or birth--something new. Maybe a new me. Maybe finally start to turn all of this into a book. I am using this recovery time to try and figure it out. What I do know is that I am excited to find myself pregnant again--not with child, but with possibilities. And, as sad as I am, and will continue to be, about the loss of my baby boy, I can be excited about what is ahead; excited to move forward in this new phase of life; excited to figure out how best to honor Patrick's memory.
These past five years have altered my life, and me, in ways I had never imagined. Back when we started, I honestly believed that just fighting to become pregnant would be the hardest thing I would ever have to face. Instead, it's moving forward as a family of three after having been a family of four. I am physically and emotionally exhausted. I was not prepared for this journey. I have been lucky for the support of friends, family, and my spouse. I know that each one of these challenges has tested and destroyed other marriages. That mine has survived all of them is something of a miracle, for which I am eternally grateful.
Speaking of miracles, we have been asked whether we believe in miracles and why we think Patrick didn't get one. Here's the thing. God did not look down and say, "Oh, it's the Hobsons, this can't happen to them, we'll fix it right away." That's not how it works. God does miracles in His own time for His own purpose, not on demand. And the truth is, we had tons of miracles already. Two successful rounds of IVF--miracle! Our daughter's health in spite of her serious CHD diagnosis and open-heart surgery--miracle! Patrick's birth--miracle! The surgeon's ability to unifocalize Patrick's pulmonary arteries without a patch during the first surgery--miracle! Ten months with the most adorable, cuddly, smiling boy--miracle! That Patrick died is not evidence of a lack of God's presence or the lack of miracles. It is not evidence that we did not believe hard enough, or that we sinned somehow. It is not evidence of failure or inadequacy. Patrick's death is proof of life. To paraphrase Braveheart: Everyone dies; the task before us is to truly live.
I am still figuring out how to do that. I am coping with survivor's guilt. There are so many things we are going to be able to do now that we couldn't do if Patrick had lived--like my return to work. But it's important that I find a way to move forward; to make my life meaningful. Because maybe, just maybe, Patrick did me a great honor. Maybe he sacrificed his time here so that I would not have to give up my career to become a full-time caretaker for him, so that we wouldn't have to split up the family, or potentially destroy the family we worked so hard to create. Figuring out whether this is true is not important. What is important is to figure out how to live authentically and honor Patrick's life as best I can with mine.
Which brings me back to my hysterectomy. I am now wholly and completely infertile. There will be no more children. That part of my life is irrevocably over. But I am not sad. I am completely at peace. Not only am I finally free of the physical pain and suffering my conditions caused me, I am free of worry, free of monthly reminders, free to take all of the energy that has been tied up in these other things and channel it into--or birth--something new. Maybe a new me. Maybe finally start to turn all of this into a book. I am using this recovery time to try and figure it out. What I do know is that I am excited to find myself pregnant again--not with child, but with possibilities. And, as sad as I am, and will continue to be, about the loss of my baby boy, I can be excited about what is ahead; excited to move forward in this new phase of life; excited to figure out how best to honor Patrick's memory.
10.16.2014
My New Theme Song
Lying awake at 2:00 a.m., feeling equal parts exhaustion, pain, and insomnia, I find my thoughts once again turn to silly songs and parodies to make light of my situation.
So here, without further adieu, is my latest creation:
(Sung to the tune of "WKRP in Cincinnati")
Baby, if you ever wondered
Wondered, whatever became of me
I'm lying on a bed down in the guest room
Recovering from a hysterectomy
Got kind of tired of pain and medications
In the store, up and down the aisle
Babies were the best thing my womb gave to me
The rest I will forget after a while
I'm recovering now from a hys-ter-rec-to-my.
(Goodnight everybody!)
So here, without further adieu, is my latest creation:
(Sung to the tune of "WKRP in Cincinnati")
Baby, if you ever wondered
Wondered, whatever became of me
I'm lying on a bed down in the guest room
Recovering from a hysterectomy
Got kind of tired of pain and medications
In the store, up and down the aisle
Babies were the best thing my womb gave to me
The rest I will forget after a while
I'm recovering now from a hys-ter-rec-to-my.
(Goodnight everybody!)
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