"On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."
Because there had never been anyone like you...
ever in the world."
~ On the Night You Were Born
Nancy Tillman
When I first read that paragraph in the middle of a Barnes & Noble a week before Christmas I immediately started crying. It just hit me in a raw spot of my heart. All babies are unique and different and are their own snowflake. But Charlie is literally the only one in the world with his mutation and who knows if there will ever be anyone else in the world with the same. The life will never be the same part is the other part that got me. Because really, life never will be the same. Genetic mutation or no genetic mutation Charlie was always going to change our lives. But this is quite a shock and honestly more than we bargained for.
When you are deciding to have children sure you sort of discuss the possibility of having a special needs child and say "oh, we can handle one" because really you don't expect to have one. It's easy to dismiss that concern of what you will do if you have one because what are the chances you actually will? So here I am, life forever changed and most days I feel a mess. I have a special needs baby, I have a spirited (wild wildabeast/godzillaesque) toddler & a teenager to try and raise. Some days I kind of feel like a rock star like I have totally got this down pat. Most days however I feel a fucking mess and like I'm just drowning and failing miserably. Some days all I want to do is scream and throw a fit and rant about how this shit just isn't fair. Honestly I don't do it though, I try and just hold it together because even if I throw a fit at the end of the fit I still have a special needs baby. I still have a wild and crazy two year old. I still have a teenager who goes from sullen, to happy, to weepy in the blink of an eye. All the fits in the world aren't going to change a fucking thing.
We got news from Oncology I don't know how to label it, good, bad, in between? Charlie's mutation are in all the cells of his body not just his white blood cells. This is good because it may mean that he will not have to have cancer treatment. There are around 12 people in the world with this mutation and JMML 75% of them did not need treatment for their JMML. Charlie's mutation is nothing like their mutation but as he is not getting worse and in some ways his counts are getting better they have a lot of hope that he won't need treatment. This is a sigh of relief because honestly 6+ weeks in the hospital was depressing me and freaking me out. I mean what were we going to do with the other two kids for that time? The other part is they weren't that convinced that Charlie's body could handle treatment. They felt very strongly that instead of a private sterile room on the oncology floor he'd have to ride out his treatment in the PICU because he has so many other problems.
The flipside to all this is that his mutation being in all of his cells...means more possible delays. More possible disabilities, more possible anything. Of course as per usual we just don't know. I was convinced that my many years of viewing doctor shows had prepared me and taught me how things worked. I thought after our ordeal with Jeremy being in the hospital and being diagnosed with all kinds of things I knew what I was doing. I knew that they ran tests, gave answers, treatment happened etc. I was not prepared to have no answers. I was not ever prepared to have doctor after doctor specialist after specialist tell me that they just don't know. So we don't know and time will tell.
I'm so mixed up about all this. I am baffled by the idea that there is a cancer that may just go away on it's own. I am grossly unprepared for a baby with special needs. I am grossly unprepared to go to a million doctors appointments and keep my shit together. I don't know how to do any of this and I don't know that I can. I know that I will do it all because I haven't been given any choices and because I'm a mother and mother's don't quit. But I have no idea if I will be doing it right or screwing all the kids up, screwing my marriage up and giving the cat complex issues.
My mother keeps saying she doesn't know how I do it and if it were her she'd just break down and be unable to do it. I honestly think that's bullshit. I would think that of any parent who said that. Even if you don't know what you are doing, even if you are bad at doing all of it you will most likely do it. You will keep going because someone out there in the universe placed their trust in you to take care of this unique human being and keep them going. I am very blessed to have Charlie in my life but some days I feel like I am part of some giant cosmic prank and Ashton Kutcher is going to jump out and say "gotcha"!
Ending this post on a high note Henry's test came back negative for genetic mutation. He's still wild and crazy but we don't have that hanging over our heads anymore. So I guess on that front Universe - 0 Me - 1.
Monday, January 21, 2013
Friday, January 11, 2013
On All Things Charlie
I haven't written in a while because honestly sometimes I just like to keep my thoughts to myself and focus on Charlie. My mind is constantly in a whirlwind and I have such a hard time plucking specific thought strands out and putting them into words that make sense.
We made it through Christmas and we made it through the New Year. It's 2013 and our Journey with Charlie and his conditions started in July 2012. We have more answers now than we did back then but we are still left with so many unknowns. We hear "I don't know" so often that I don't even really understand what those words mean anymore!
Charlie was scheduled for an MRI but at the last minute over fears from his issues with anesthesia (issues is putting it lightly he stops breathing) they cancelled it. They did a quick flash MRI (meaning they swaddled him and took really quick photos of his brain for his neurosurgeon and pulled him out before he could fuss. It wasn't anything that his neurologist can use but it did give a clear picture to his Neurosurgeon. What we can see is that his ventricles are almost normal sized (as normal as they ever will be that is) and there is no longer fluid leaking into his brain. All good things. As for his neurologist we met with him and got more "I don't knows". Charlie has abnormal brain structures caused by his genetic mutation and we have no idea how any of it will ever affect him. We were hoping to get some solid answers from the MRI but now we are waiting until later to do an MRI to see if we can get an idea of whether or not he suffers from any brain damage (from his brain bleed at birth, from his hydrocephalus etc) and if we can get a clear idea of what his development may be like.
Charlie had a neurodevelopmental evaluation this week. We heard once again "we don't know". We don't know if he will ever walk, if he will ever do math, if he will ever go to school, if he will be some evil super genius, no one knows anything. It's so funny that we waited so long for answers and when we got the answer of "CBL Genetic Mutation" it followed with "but we don't know anything about this because he's the only one with it".
On the cancer front we are still hearing "we don't know". We don't know if he will survive, we don't know if he needs treatment, we don't know anything. From what I've been reading if he has treatment then he is at risk of all kinds of side effects & secondary cancers plus relapse. If he doesn't receive treatment he is still at risk for other cancers and either way he most likely has a shortened time span. Also that he will never be considered cured. He will have no evidence of disease but he will never be cured. This is a lifelong journey that we are on no matter how long the life is.
I'm not sure which was more gut wrenching to hear "may never walk" or "shortened life span". Both aren't easy to hear. It's not the end of the world if he doesn't walk but it's hard hearing over and over all these things that are wrong and that may happen or may never happen. I love Charlie and I don't regret any part of him but it's hard knowing how hard of a road he has ahead of him. It's even harder knowing that he may never be able to understand. He may never develop enough to grasp the concept of what is happening and what is going on.
I think a lot of people have started to sort of...move on when it comes to Charlie. I no longer get constant messages asking for updates or people constantly worried. I think it has a lot to do with how well Charlie looks. He looks like a happy and healthy baby. Which as far a the happy goes he is. You just can't see everything that is going on inside of him. The Cancer that lays within his bone marrow, the low platelets, the high white blood cell count. You can't see the enlarged spleen and liver. It's easy to forget and its easy to move on. There are days where I can almost forget what we are dealing with and I can just enjoy Charlie.
So here we are. It's 2013 we may be closer to having some answers but it all still feels so far away. I still feel as helpless and as in the dark as I felt in July 2012 when the ultrasound technician handed me a towel to wipe off my belly and said "there are some complications you need to immediately proceed to the hospital for a different ultrasound, I can't give you any details". I'm not even sure how to act anymore. I don't know how to be around people I don't know how to carry on conversations. I just feel so dark and alone inside.
I'm trying to enjoy whatever time we have with Charlie whether it's 100 years or 100 days but it's so hard to feel like there is some sort of mythical expiration date on the time that we have with him. It's also even harder to think of all the things we may face down the line. Like acquiring a wheelchair, like I know how to go about that? Our house is not wheelchair capable how do you go about that? I guess when it comes to that point we will just figure it out like we have been doing all these months.
We made it through Christmas and we made it through the New Year. It's 2013 and our Journey with Charlie and his conditions started in July 2012. We have more answers now than we did back then but we are still left with so many unknowns. We hear "I don't know" so often that I don't even really understand what those words mean anymore!
Charlie was scheduled for an MRI but at the last minute over fears from his issues with anesthesia (issues is putting it lightly he stops breathing) they cancelled it. They did a quick flash MRI (meaning they swaddled him and took really quick photos of his brain for his neurosurgeon and pulled him out before he could fuss. It wasn't anything that his neurologist can use but it did give a clear picture to his Neurosurgeon. What we can see is that his ventricles are almost normal sized (as normal as they ever will be that is) and there is no longer fluid leaking into his brain. All good things. As for his neurologist we met with him and got more "I don't knows". Charlie has abnormal brain structures caused by his genetic mutation and we have no idea how any of it will ever affect him. We were hoping to get some solid answers from the MRI but now we are waiting until later to do an MRI to see if we can get an idea of whether or not he suffers from any brain damage (from his brain bleed at birth, from his hydrocephalus etc) and if we can get a clear idea of what his development may be like.
Charlie had a neurodevelopmental evaluation this week. We heard once again "we don't know". We don't know if he will ever walk, if he will ever do math, if he will ever go to school, if he will be some evil super genius, no one knows anything. It's so funny that we waited so long for answers and when we got the answer of "CBL Genetic Mutation" it followed with "but we don't know anything about this because he's the only one with it".
On the cancer front we are still hearing "we don't know". We don't know if he will survive, we don't know if he needs treatment, we don't know anything. From what I've been reading if he has treatment then he is at risk of all kinds of side effects & secondary cancers plus relapse. If he doesn't receive treatment he is still at risk for other cancers and either way he most likely has a shortened time span. Also that he will never be considered cured. He will have no evidence of disease but he will never be cured. This is a lifelong journey that we are on no matter how long the life is.
I'm not sure which was more gut wrenching to hear "may never walk" or "shortened life span". Both aren't easy to hear. It's not the end of the world if he doesn't walk but it's hard hearing over and over all these things that are wrong and that may happen or may never happen. I love Charlie and I don't regret any part of him but it's hard knowing how hard of a road he has ahead of him. It's even harder knowing that he may never be able to understand. He may never develop enough to grasp the concept of what is happening and what is going on.
I think a lot of people have started to sort of...move on when it comes to Charlie. I no longer get constant messages asking for updates or people constantly worried. I think it has a lot to do with how well Charlie looks. He looks like a happy and healthy baby. Which as far a the happy goes he is. You just can't see everything that is going on inside of him. The Cancer that lays within his bone marrow, the low platelets, the high white blood cell count. You can't see the enlarged spleen and liver. It's easy to forget and its easy to move on. There are days where I can almost forget what we are dealing with and I can just enjoy Charlie.
So here we are. It's 2013 we may be closer to having some answers but it all still feels so far away. I still feel as helpless and as in the dark as I felt in July 2012 when the ultrasound technician handed me a towel to wipe off my belly and said "there are some complications you need to immediately proceed to the hospital for a different ultrasound, I can't give you any details". I'm not even sure how to act anymore. I don't know how to be around people I don't know how to carry on conversations. I just feel so dark and alone inside.
I'm trying to enjoy whatever time we have with Charlie whether it's 100 years or 100 days but it's so hard to feel like there is some sort of mythical expiration date on the time that we have with him. It's also even harder to think of all the things we may face down the line. Like acquiring a wheelchair, like I know how to go about that? Our house is not wheelchair capable how do you go about that? I guess when it comes to that point we will just figure it out like we have been doing all these months.
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