Today I hit a big milestone. The physical therapist came this morning, and after she left I didn't cry one tear! Usually, after any kind of therapy or doctor's appointment, I cry for a brief few minutes or a longer period of time, depending on what I was doing. Today, I have pretty much been home all day and not one tear has been shed.
Unfortunately, I cannot guarantee the crying won't happen later. Friday was really hard for some reason. When I finally got a hold of Adam to talk to him about it, he told me to get a movie so I would stop thinking about everything. So I ran out and rented "The Waitress." I don't know if you have seen this movie, but through almost all of it the main character is pregnant. So I'm sitting there watching this movie, trying not to think about anything sad, and I see the main character holding her new baby and start wondering, "Will I ever be pregnant again?" Totally not helpful to the whole try-to-keep-from-being-emotional thing.
I'll explain a little...A week or so ago we went and talked to a geneticist about Connor's disease. I have to admit I was a little bothered...I guess they expected us to be all completely heartbroken and totally uninformed about what was wrong with him. They kept asking us what we wanted to know about the disease, and I am staring at our "genetic counselor" wondering if she really doesn't realize that it took us a month and a half to get in to see her and we haven't just been sitting around the whole time crying about something we didn't understand. She had some info for us--printed sheets from a website I have already thoroughly researched, and a pamphlet from a foundation set up by parents of a little girl who died from SMA. You'd think the pamphlet would be helpful, but nope--it sure wasn't. They were obviously looking to scare people into feeling so horrible about SMA that they would donate, but it wasn't exactly helpful to parents trying to stay positive about the whole thing.
The only good thing I will say that came out of the meeting was info about our options for having another child.
Option 1: Keep Trying Til You Get It Right
This options means we get pregnant and abort babies until we get one that doesn't test positive for having SMA. Really this is out of the question for us.
Option 2: Give It Your Best Shot
We just get pregnant and hope the odds are actually in our favor this time.
Option 3: Read the End of the Book First
Also called PreImplantation Genetic Determination, or PGD. It's pretty much In Vitro Fertilization, but they pick an egg and sperm that won't give the baby SMA. About $15,000 for the IVF, and an extra $5,000 for the egg/sperm determining. And of course our insurance gives us no coverage for IVF. Also, there is only about a 20-30% chance the embryo will implant...so it could be a total waste of money, time, etc.
Option 4: Find a Greener Pasture
Adopt.
Option 5: Phone a Friend
Get a sperm/egg donor, and use only one sperm/egg from us. Ok, so I hope this doesn't offend anyone, but this totally creeped me out. I guess I should be more open to all this, but it is just the idea of the baby being partly one of us and partly some stranger is just really, well, strange. And surely that would involve some IVF.
So what are we supposed to do? The occupational therapist (OT) said something later about maybe getting sperm/egg from a sibling of ours...okay, that was TOTALLY creepy...so the baby would have us as parents but then have a mom/aunt or dad/uncle? How do you explain that to them? I just gave the OT a polite smile and "Hmmm."
Definitely more to think about...seems like we are learning about more every day.
Monday, April 21, 2008
Wednesday, March 26, 2008
Diagnosis of a Season
So I guess the season of our life changed a little recently. As many people now know, earlier this month our son was diagnosed with Spinal Muscular Atrophy. This disease causes his muscles to progressively weaken and weaken to the point where they are finally useless. The neurologist and pediatrician believe he has Type III, which hopefully means he will have a typical life expectancy.
Learning of this was really difficult, as I'm sure you could expect. Adam and I cried in the doctor's office, and I cried in the parking garage, and at home, and during family prayer, and at bedtime, and have I woke up and started crying at random times in the middle of the night. I cry for all the things our sweet boy will not be able to do...for the missed soccer games and the games of tag, that he won't serve a normal mission, for the frustration he'll have with a body that won't do what he's asking of it, and for all the difficult questions our baby will one day ask that we're not sure just yet how to answer...will he date? will he marry? will he have children? why am i different? am i going to die? We cry as we watch him now struggle with the feet he drags behind him and as he sits on the floor in nursery to eat snack while all the other kids sit at the table. Will he always be excluded in some way? Will there be friends he won't have? Birthday parties he won't be invited to? Will people be mean to our baby for something he could not possibly have helped? We cry inside each time he coughs and wonder "Is that a normal cough, or is it getting worse? Is this the first sign of a problem?" And we cry that life seems so backwards...that two people so in love--so much more than even when we met--could unknowingly pass on a gene that would do this to the one other person they love most in the world. And this crying is in our hearts, as we ache for our little boy.
And yet, the mercy of it all is that all that is just in our hearts. Our minds know better. We know that our baby is the light of every room he's in, and there will always be people who love him. He is a magnet for smiles, and will always be. We know that we have been blessed with incredible health care professionals who are already watching out for him and helping him achieve more and more. And we know that we are all dying, but life is not about that--it is about living. And we know that our Father in Heaven wanted our baby to live with this disease, and us as his family to work through what comes our way as a result of it. And Adam and I know of the love and support of our family and friends that have been poured upon us as more and more hear of this disease.
So then, when we merge that heart and mind together, we realize that in this season we have a choice. We can live our lives crying for what can't be done, or we can love living. So Adam and I have decided that even if we have good days and bad days, we will teach our son to love living life. Because a wonderful life is what his will be.
Learning of this was really difficult, as I'm sure you could expect. Adam and I cried in the doctor's office, and I cried in the parking garage, and at home, and during family prayer, and at bedtime, and have I woke up and started crying at random times in the middle of the night. I cry for all the things our sweet boy will not be able to do...for the missed soccer games and the games of tag, that he won't serve a normal mission, for the frustration he'll have with a body that won't do what he's asking of it, and for all the difficult questions our baby will one day ask that we're not sure just yet how to answer...will he date? will he marry? will he have children? why am i different? am i going to die? We cry as we watch him now struggle with the feet he drags behind him and as he sits on the floor in nursery to eat snack while all the other kids sit at the table. Will he always be excluded in some way? Will there be friends he won't have? Birthday parties he won't be invited to? Will people be mean to our baby for something he could not possibly have helped? We cry inside each time he coughs and wonder "Is that a normal cough, or is it getting worse? Is this the first sign of a problem?" And we cry that life seems so backwards...that two people so in love--so much more than even when we met--could unknowingly pass on a gene that would do this to the one other person they love most in the world. And this crying is in our hearts, as we ache for our little boy.
And yet, the mercy of it all is that all that is just in our hearts. Our minds know better. We know that our baby is the light of every room he's in, and there will always be people who love him. He is a magnet for smiles, and will always be. We know that we have been blessed with incredible health care professionals who are already watching out for him and helping him achieve more and more. And we know that we are all dying, but life is not about that--it is about living. And we know that our Father in Heaven wanted our baby to live with this disease, and us as his family to work through what comes our way as a result of it. And Adam and I know of the love and support of our family and friends that have been poured upon us as more and more hear of this disease.
So then, when we merge that heart and mind together, we realize that in this season we have a choice. We can live our lives crying for what can't be done, or we can love living. So Adam and I have decided that even if we have good days and bad days, we will teach our son to love living life. Because a wonderful life is what his will be.
How Things Change
So I decided to do this cause I guess it is sort of a modern day "journal" entry. Apparently, we are all supposed to be writing in journals, so I hope this counts. I was a GREAT journal writer until I got married, and then suddenly my life got so much more complicated with things and responsibilities that journal writing just took a back seat. (I'm sure many people can relate.) So, here goes my shot at starting again. We'll see how this works.
I decided to call this "seasons" because I was once in a lecture at BYU where my professor's wife was guest-lecturing and she talked about this topic. She was, like her husband, a well-respected professor and researcher in the field of communicative disorders, but her lecture that day was more about our lives and less about our professions. I was very impressed with her and the balance she achieved between work and family, and how she incorporated the gospel into all of it. She talked about the seasons of our world and said sometimes we wish it was spring, but there are reasons for us not to be in spring just then, and someday spring will come again. And so go our lives...sometimes we are not exactly where we want to be in our lives--whether figuratively or literally--but there are reasons for us being there that we often do not know. We should not wish to be somewhere else, but instead make the best of where we are and know that we will eventually get where we want to be.
I decided to call this "seasons" because I was once in a lecture at BYU where my professor's wife was guest-lecturing and she talked about this topic. She was, like her husband, a well-respected professor and researcher in the field of communicative disorders, but her lecture that day was more about our lives and less about our professions. I was very impressed with her and the balance she achieved between work and family, and how she incorporated the gospel into all of it. She talked about the seasons of our world and said sometimes we wish it was spring, but there are reasons for us not to be in spring just then, and someday spring will come again. And so go our lives...sometimes we are not exactly where we want to be in our lives--whether figuratively or literally--but there are reasons for us being there that we often do not know. We should not wish to be somewhere else, but instead make the best of where we are and know that we will eventually get where we want to be.
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