This morning I read a post by my favorite blogger, Phoebe Holmes, about the emotional landscape that surrounds having a child with a disability. Then, I went to class and heard one of my classmates, who has an adult child with autism, talking about all the things she is in addition to being the mother of a person with disabilities. A light bulb went off in my head. "That's right!", I thought and decided to share my stroke of insight with you:
The Woman You Lose
Just like the dreams I had for my child before she had half of her brain removed, I had dreams for myself as a mother and a woman. I longed for the day when my baby would say "Mama" and would walk. I literally had dreams of conversations with Lily while I was pregnant with her and living with a daily dread that this baby was so sick, despite the doctors encouragement that she was fine. I planned to return to work in advertising and looked forward to finding a good day care where she could make friends and I could continue my successful career. I was really good at what I did. I dreamed of being a good mom that held my baby all the time and made my baby laugh and felt an overwhelming sense of connection to her.
That didn't happen for me. You see, my baby was born with a giant hole in her brain and a lethal form of epilepsy. But, it would be 6 months before doctors would discover how sick she really was. So, in the meantime, I had a baby that didn't want to be held and I took it as my own failure. It would not be until she was 8 months old when a therapist would have the insight to tell me that Lily's brain was in such disarray that touch appeared to cause her pain and that I had been so loving and kind to her by not holding her. She told me that I could have been selfish and continued to cuddle Lily but that I had tuned in to what Lily needed and sacrificed my own comfort. It is people like Lucy that really helped me find any scrap of peace during Lily's illness.
I also lost the ability to sell advertising. I remember one day, a few weeks when I got home from Cleveland where my daughter had two separate surgeries to remove the right half of her brain. An advertiser called me and was hysterical because his ad had landed across the page from a picture of rain boots. He proceeded to rant for about five minutes about how rain boots aren't fashion and if we don't get that as a publication then he shouldn't be advertising his very classy salon with us. I took a deep breath and then unleashed a year's worth of fury on this little man: "You need a dog or a hobby. Do you know where I have been or what I've seen in the last few weeks and you are calling me with this bull-!" Needless to say, I was taken off of advertising duties and made more of an office assistant. I was honestly relieved. The person that could put up with pettiness died in Cleveland. When I had to look my new friend in the eye after she had just watch her 24 day old baby slowly pass away something in me got darker and when my child first became ill I was snatched out of the illusion that this world was safe for babies. There were no guarantees and heartache is just around the corner. I didn't know there was a whole world where mothers had to bury babies-not in a real sense-and I now had a front row seat to this truth.
I also feel like I lost the ability, in the eyes of society, to have ambition. Having a child with a disability suddenly meant that I needed to be home, plain, and dull. I have to make tough choices about what I can and can't do as far as work and school because Lily and her endless doctors appointments come first. But, I'll tell you a secret-sometimes I make appointments when they are convenient for me-and I feel guilty about it.
In some ways I lost the ability to be obliging in a lot of situations. I live with the reality that my daughter suffered with seizures for 6 months before diagnosis because I listened to a couple of doctors that assured me that I was just a scared new mom and my baby was fine. I did a bit to try and get her into a neurologist and video taped her episodes and took her a handful of times to the doctor but I wish that someone would have intervened sooner. I am not convinced the outcome would have been different but they may have saved me a few months of self loathing and maybe spared her some pain. Maybe I wouldn't have pushed she and I so hard to be normal and to progress. So I now push hard for anything relating to my children and sometimes I might push in other areas that aren't as important. I have become, in some senses, one of those women that I despised when I was younger who acted like their children are the only children in the world and that we should care. Today, my children aren't the only children but they are mine and they come first and I will humiliate myself or hurt your feelings if I have to in order to do what is right.
The Woman You Gain
So starting where I left off on the last one-the woman I am today is much more courageous than the previous. Because I had to learn to fight for my child, I learned that I wasn't going to die, in most cases, if I was not 100% pleasant. I was a terminal people pleaser before I had Lily and would rather suffer than to say the wrong thing. I had to get tough and I had to learn to trust my intuition because my intuition was the only thing that got me to take her to the emergency room that day and it was the only thing that kept me pushing to find a cure when the doctors weren't sure where to go next. It was that courage that allowed me to do the managing it would take to get the insurance to cover her surgery. These are the same skills I will need throughout her education to make sure that she is receiving the best, fair education she can get. My neurotypical baby will get to enjoy the benefits of this new woman, too. My youngest is a climber and seeks intense stimulation so with my new understanding of how the sensory system works I am helping her seek play and activities that fulfill her needs so that she can then settle down and sleep well and concentrate.
My business is different as well. As I watched families navigating these medical systems I watched them burn precious hours that may have been their child's last dealing with phone calls and paperwork from medical systems that didn't appreciate what was at stake for the families. For a short time I worked for a local company that has some involvement in educating medical students about the experience families have in medical systems. I am now pursuing a Master's degree in Health Communication with a focus on how providers communicate with families with children with special healthcare needs. I am applying to PhD programs and recently completed a year long fellowship in Leadership Education in Neurodevelopment and Related Disabilities (NMLEND). I hope to become an authority on the topic and help hospitals and insurance companies all over the US begin to treat families better. There is little worse in this life than watching a child suffer and slip away from this realm and I demand that medical systems only seek to comfort families in those times. I want to he a part of fixing it.
My friend Lois was commenting on how many balls she had in the air in addition to raising her adult child with autism and some of our classmates kept saying "I don't know how she does it". This is something that I hear often. Because we have to. Look, I worked 40-50 hours a week on less than 2 hours of sleep for almost two years. Lily could not sleep more than a couple of hours at a time, and most of those hours were during the day, while I was at work. I had to work even though I was exhausted and scared out of my mind. Anything today is just so much easier. I also enjoy what I am doing now so that makes it easier to push through. By way of Lily's illness I found out that I am a much greater intellect than I ever imagined and I am elated to get the chance to use my mind! My self care time is going to school and working on research. I feel the most successful and in my element when my brain is being allowed to solve these problems. I also appreciate that Lily will cost more than a neurotypical child. She will have surgeries, special shoes, and maybe even private school if the public school system gets too ridiculous! I need to hustle because I don't ever want to feel the level of despair we felt two years ago when I was unemployed and Paul's hours got cut drastically over that summer.
Before, I was absolutely incapable of donating to charity. I just didn't know what it did. I thought it was a waste of my money and just figured that fat cats took the money and bought BMW's. Because of Lily's needs we have been the recipient of some charity. I can't speak for all charities but the Ronald McDonald House, The Carrie Tingley Hospital Foundation, and the Hemispherectomy Foundation were and continue to be lifelines in our pursuit of freedom and happiness for Lily. I try to contribute as much as I can and each year I set a higher goal and strive to meet it.
All in all, I really like the woman I am today. I have a lot of sadness that trickles out most days and knocks me down completely on other days. I am not one of those mothers that would say that I wouldn't trade Lily's illness. If I could make Lily whole, save her from the pain she has felt and the hardships she will face, I would do it in a second. I would give up any of the gifts I have found by way of her illness if it meant she wouldn't have to struggle. But I can't. So what I try to do each day is to be the woman she helped to mold and to strive, in her honor, to improve the lives of as many others as I can.
To all the other "New Women"- go on girl! Rock on with your bad self!
The Woman You Lose
Just like the dreams I had for my child before she had half of her brain removed, I had dreams for myself as a mother and a woman. I longed for the day when my baby would say "Mama" and would walk. I literally had dreams of conversations with Lily while I was pregnant with her and living with a daily dread that this baby was so sick, despite the doctors encouragement that she was fine. I planned to return to work in advertising and looked forward to finding a good day care where she could make friends and I could continue my successful career. I was really good at what I did. I dreamed of being a good mom that held my baby all the time and made my baby laugh and felt an overwhelming sense of connection to her.
That didn't happen for me. You see, my baby was born with a giant hole in her brain and a lethal form of epilepsy. But, it would be 6 months before doctors would discover how sick she really was. So, in the meantime, I had a baby that didn't want to be held and I took it as my own failure. It would not be until she was 8 months old when a therapist would have the insight to tell me that Lily's brain was in such disarray that touch appeared to cause her pain and that I had been so loving and kind to her by not holding her. She told me that I could have been selfish and continued to cuddle Lily but that I had tuned in to what Lily needed and sacrificed my own comfort. It is people like Lucy that really helped me find any scrap of peace during Lily's illness.
I also lost the ability to sell advertising. I remember one day, a few weeks when I got home from Cleveland where my daughter had two separate surgeries to remove the right half of her brain. An advertiser called me and was hysterical because his ad had landed across the page from a picture of rain boots. He proceeded to rant for about five minutes about how rain boots aren't fashion and if we don't get that as a publication then he shouldn't be advertising his very classy salon with us. I took a deep breath and then unleashed a year's worth of fury on this little man: "You need a dog or a hobby. Do you know where I have been or what I've seen in the last few weeks and you are calling me with this bull-!" Needless to say, I was taken off of advertising duties and made more of an office assistant. I was honestly relieved. The person that could put up with pettiness died in Cleveland. When I had to look my new friend in the eye after she had just watch her 24 day old baby slowly pass away something in me got darker and when my child first became ill I was snatched out of the illusion that this world was safe for babies. There were no guarantees and heartache is just around the corner. I didn't know there was a whole world where mothers had to bury babies-not in a real sense-and I now had a front row seat to this truth.
I also feel like I lost the ability, in the eyes of society, to have ambition. Having a child with a disability suddenly meant that I needed to be home, plain, and dull. I have to make tough choices about what I can and can't do as far as work and school because Lily and her endless doctors appointments come first. But, I'll tell you a secret-sometimes I make appointments when they are convenient for me-and I feel guilty about it.
In some ways I lost the ability to be obliging in a lot of situations. I live with the reality that my daughter suffered with seizures for 6 months before diagnosis because I listened to a couple of doctors that assured me that I was just a scared new mom and my baby was fine. I did a bit to try and get her into a neurologist and video taped her episodes and took her a handful of times to the doctor but I wish that someone would have intervened sooner. I am not convinced the outcome would have been different but they may have saved me a few months of self loathing and maybe spared her some pain. Maybe I wouldn't have pushed she and I so hard to be normal and to progress. So I now push hard for anything relating to my children and sometimes I might push in other areas that aren't as important. I have become, in some senses, one of those women that I despised when I was younger who acted like their children are the only children in the world and that we should care. Today, my children aren't the only children but they are mine and they come first and I will humiliate myself or hurt your feelings if I have to in order to do what is right.
The Woman You Gain
So starting where I left off on the last one-the woman I am today is much more courageous than the previous. Because I had to learn to fight for my child, I learned that I wasn't going to die, in most cases, if I was not 100% pleasant. I was a terminal people pleaser before I had Lily and would rather suffer than to say the wrong thing. I had to get tough and I had to learn to trust my intuition because my intuition was the only thing that got me to take her to the emergency room that day and it was the only thing that kept me pushing to find a cure when the doctors weren't sure where to go next. It was that courage that allowed me to do the managing it would take to get the insurance to cover her surgery. These are the same skills I will need throughout her education to make sure that she is receiving the best, fair education she can get. My neurotypical baby will get to enjoy the benefits of this new woman, too. My youngest is a climber and seeks intense stimulation so with my new understanding of how the sensory system works I am helping her seek play and activities that fulfill her needs so that she can then settle down and sleep well and concentrate.
My business is different as well. As I watched families navigating these medical systems I watched them burn precious hours that may have been their child's last dealing with phone calls and paperwork from medical systems that didn't appreciate what was at stake for the families. For a short time I worked for a local company that has some involvement in educating medical students about the experience families have in medical systems. I am now pursuing a Master's degree in Health Communication with a focus on how providers communicate with families with children with special healthcare needs. I am applying to PhD programs and recently completed a year long fellowship in Leadership Education in Neurodevelopment and Related Disabilities (NMLEND). I hope to become an authority on the topic and help hospitals and insurance companies all over the US begin to treat families better. There is little worse in this life than watching a child suffer and slip away from this realm and I demand that medical systems only seek to comfort families in those times. I want to he a part of fixing it.
My friend Lois was commenting on how many balls she had in the air in addition to raising her adult child with autism and some of our classmates kept saying "I don't know how she does it". This is something that I hear often. Because we have to. Look, I worked 40-50 hours a week on less than 2 hours of sleep for almost two years. Lily could not sleep more than a couple of hours at a time, and most of those hours were during the day, while I was at work. I had to work even though I was exhausted and scared out of my mind. Anything today is just so much easier. I also enjoy what I am doing now so that makes it easier to push through. By way of Lily's illness I found out that I am a much greater intellect than I ever imagined and I am elated to get the chance to use my mind! My self care time is going to school and working on research. I feel the most successful and in my element when my brain is being allowed to solve these problems. I also appreciate that Lily will cost more than a neurotypical child. She will have surgeries, special shoes, and maybe even private school if the public school system gets too ridiculous! I need to hustle because I don't ever want to feel the level of despair we felt two years ago when I was unemployed and Paul's hours got cut drastically over that summer.
Before, I was absolutely incapable of donating to charity. I just didn't know what it did. I thought it was a waste of my money and just figured that fat cats took the money and bought BMW's. Because of Lily's needs we have been the recipient of some charity. I can't speak for all charities but the Ronald McDonald House, The Carrie Tingley Hospital Foundation, and the Hemispherectomy Foundation were and continue to be lifelines in our pursuit of freedom and happiness for Lily. I try to contribute as much as I can and each year I set a higher goal and strive to meet it.
All in all, I really like the woman I am today. I have a lot of sadness that trickles out most days and knocks me down completely on other days. I am not one of those mothers that would say that I wouldn't trade Lily's illness. If I could make Lily whole, save her from the pain she has felt and the hardships she will face, I would do it in a second. I would give up any of the gifts I have found by way of her illness if it meant she wouldn't have to struggle. But I can't. So what I try to do each day is to be the woman she helped to mold and to strive, in her honor, to improve the lives of as many others as I can.
To all the other "New Women"- go on girl! Rock on with your bad self!
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