Well, it is February 28th and today David had his surgical consult with his ortho surgeon. Once again they took x-rays that made me cringe...seeing the extreme curving of his lower spine. It makes me want to cry just thinking of the pain he must chronically be in. The surgery date is not set as yet because the pediatric ortho surgeon and the spine surgeon have to coordinate schedules as they will both be doing the surgery. They said I should hear from them on a date in the next few days but that it will likely be the third or fourth week of March.
As if delving deeper into David's upcoming surgery weren't stress enough, I was met with a very interesting woman this morning. I run a couple of facebook pages in my hometown. One is more of a nostalgia page and the other is a city issues page where people can speak about their concerns and issues with the community. With both I try very hard to keep positive and kind and it is my small way of giving back to our community....a community I love and yes....a community I have had to rely on from time to time.
This morning I was met with texts and messages saying that a woman was being very hateful on our city issue page about my families current situation and my asking for help and getting fundraisers in place to help save David's home. When I went to the page there was nothing there except a new post where she was commenting that her post had been removed. I just assumed she herself had removed it.
Her complaint in a nutshell was that she felt I was sitting back, living off the system, doing nothing and asking for handouts. Her reasoning on this though was interesting. She feels this way because she too is a special needs mom with a grown son whom she has "worked her butt off" to take care of all these years. I assume, but never asked....that she is also a single mom. She feels that I have taken my life and thrown it out there and I guess....trying to get sympathy and get help instead of getting up and doing something about my situation.
Now I am a grown woman who has dealt with a lot of crap in my life and I am in no way thin skinned. I can pretty much take what anyone throws at me, but currently....things are a little rough and I really have had to process this whole thing. I will admit that I was a little shocked by it all, especially since 1)I don't know the woman at all and 2)the fact that she is a fellow special needs mom.
What many don't know is that this is not the first time she has let me know her opinion of me. About a week or so ago, she messaged me about midnight and told me pretty much the same thing. Again, I was pretty shocked. I was very nice to her and told her that I wasn't sure where all of this was coming from and I explained a little of my situation to her. The next morning she kindly apologized to me and I told her not to think anything of it. Life went on, or so I thought.
This woman seems to be very angry at me and I am not really sure why, although I can guess. She feels that she has worked all of her life for her son and that in her opinion I am doing nothing except asking for handouts. It is of course, not a fair assessment of my situation but, from the outside looking in, I am sure that in her mind it is accurate. This though, seems to have become very personal to her and I think she is trying hard to embarrass me (too late, I was embarrassed over this long before she chimed in) and I think she wants the entire world to see me as she does....fair or not.
I've known a lot of mothers with special needs kids and never have I run into one like her. Most of us never would think to judge one another because we all know that all our journeys to this place are very different along with our circumstances. Mostly though, we all know that being a mom of a disabled child is tough. There are no rule books and each child is different. How each family or parent handles this gift is different and to assume that "your way" is the only way is both arrogant and incorrect. So after taking in the events of this morning, I thought I would simply write a letter in a blog and clear the air.
Dear Debra,
First of all, let me say that I have nothing but respect for you. To be the mother of a disabled son who is in his 30's and for supporting him and caring for him all of these years, you are amazing in my book. I will say here though that I have no idea if your son lives with you or in assisted living. I also have no idea whether you are married, divorced, single or what. Truthfully it doesn't matter. All that does matter is that you took the gift God gave you all those years ago and you have done your best all of these years regardless of how tough it got (and you and I both know that it did from time to time) and you have taken care of him. Again, I have no idea what his disabilities are or how severe they are, but again....it doesn't matter. All that matters is that you have been the best mom you could be for this child and that deserves the up most respect from anyone you meet.
As for my situation......You seem to think you know my whole story. You do not. And that is okay, you don't have to. All you need to know is that I too am a special needs mom. I have worked and fought since the moment my son was born to make sure that his life was as good and positive as possible and that he was as well taken care of as possible. That in and of itself should be enough to garner the respect of others, especially those that know how difficult raising a disabled child can be. It apparently is not, so please, let me elaborate.
There have been times in my life as a mother, that I have worked 2-3 jobs that had me working from 5 a.m. until 1 a.m., sleeping only four hours per night. I am certainly not afraid of hard work and I have certainly done a great deal of it in my life. Since David's birth though, that has not always been possible. David has had many fragile years that have kept me home and close to him. There was simply no other way.
Then there were the times that I did work. I worked very hard and I loved every minute of it, but my employers always knew that David was my priority and when he was sick, in the hospital or having issues with seizures then I was by his side. That is how I view my role as his mother...to put him first at all times. And I can't just leave David with just anyone. David is non-verbal. He is a target for someone with less than compassionate care giving skills and yes, we have been down that road. David has been in the care of people who have verbally abused him, dropped him and neglected him. Once that happens, you trust very few people. Still and all, I have done my darndest to get respite care for him and I have been turned down every time because in order to get quality care, I would have to pay more than I would make at a job. So my not having an out of the home job is not laziness or lack of ambition.
You mentioned that I could be working while David was at school. True except for the fact that David has been out of school more days than he has been in school because of his health. He catches every bug that comes along because of his immune system. These usually cause fevers which spark his seizures. He also has really bad days with his muscles that make it almost impossible for him to get around. And then there are the nights where he doesn't sleep. This then means he can't function at school. Oh and the shunt malfunctions which happen out of nowhere. We had some real fun with that in January, with three shunt surgeries in 3 days. Now we have a spine surgery coming up which is going to take months to recuperate from. Add in to this all of his therapy appointments, specialist appointments and the intermittent doctor appointments and ER/hospital visits and you tell me how hirable I am.
What you probably don't know, is that when I am not taking care of David, I take care of another special needs lady daily. I take in laundry and ironing and yes I have been known to make the occasional cheesecake. I also clean, cook, do my own laundry, take care of my grand kids and help anyone who asks for my help and believe me, that happens more than you would think.
One of your greatest complaints seems to be that I have a large presence on facebook. Really, it is no more than anyone elses until recently. I run several facebook pages and it is all to give back to my community. I also spend a great deal of time trying to give back in other ways and encourage others to give back too. I spend a lot of time trying to hook people up who have needs with others who might help them. So yeah, I owe my community a lot and I try daily to show my appreciation.
Yes, I asked for help over this house situation. It was a situation that was both embarrassing and humbling and as someone pointed out, it was not the first time I had to ask. It was always for David though. Never for me. You also made a comment about me living off the system. That was especially offensive to me. I live off of social security death benefits. They are benefits that my late husband worked hard for so that he could take care of his family and because of this, he has been able to help continue to take care of us even since he's been gone. I have never used food stamps or taken welfare of any kind. That to me is for people that truly need that help and I would never take from people in need. So no, I don't live off the government or the system. I live off the money that my husband made while he was alive. There is absolutely no shame in that. And truth be known, even if I had been working a 40 hour a week job, if this had happened, I am sure I would still have needed help.
So Debra, I am still not sure why you find my situation so distasteful. It feels rather personal, but then again, it couldn't be.... because you don't know me. What I do know though is, we both have tough roads in this life and we are both doing our best to give our sons the best that we can, regardless of how that might look to the rest of the world. I also know that I admire your strength. It takes great strength to do what we do. And finally....I also know that if the time ever comes that you need help, there will be no question, no judgement and no memory of this current situation. All there will be is kindness, compassion and as much help as I can give you. After all, that is what it means to be a special needs mom.
Sincerely,
David's Mom
As if delving deeper into David's upcoming surgery weren't stress enough, I was met with a very interesting woman this morning. I run a couple of facebook pages in my hometown. One is more of a nostalgia page and the other is a city issues page where people can speak about their concerns and issues with the community. With both I try very hard to keep positive and kind and it is my small way of giving back to our community....a community I love and yes....a community I have had to rely on from time to time.
This morning I was met with texts and messages saying that a woman was being very hateful on our city issue page about my families current situation and my asking for help and getting fundraisers in place to help save David's home. When I went to the page there was nothing there except a new post where she was commenting that her post had been removed. I just assumed she herself had removed it.
Her complaint in a nutshell was that she felt I was sitting back, living off the system, doing nothing and asking for handouts. Her reasoning on this though was interesting. She feels this way because she too is a special needs mom with a grown son whom she has "worked her butt off" to take care of all these years. I assume, but never asked....that she is also a single mom. She feels that I have taken my life and thrown it out there and I guess....trying to get sympathy and get help instead of getting up and doing something about my situation.
Now I am a grown woman who has dealt with a lot of crap in my life and I am in no way thin skinned. I can pretty much take what anyone throws at me, but currently....things are a little rough and I really have had to process this whole thing. I will admit that I was a little shocked by it all, especially since 1)I don't know the woman at all and 2)the fact that she is a fellow special needs mom.
What many don't know is that this is not the first time she has let me know her opinion of me. About a week or so ago, she messaged me about midnight and told me pretty much the same thing. Again, I was pretty shocked. I was very nice to her and told her that I wasn't sure where all of this was coming from and I explained a little of my situation to her. The next morning she kindly apologized to me and I told her not to think anything of it. Life went on, or so I thought.
This woman seems to be very angry at me and I am not really sure why, although I can guess. She feels that she has worked all of her life for her son and that in her opinion I am doing nothing except asking for handouts. It is of course, not a fair assessment of my situation but, from the outside looking in, I am sure that in her mind it is accurate. This though, seems to have become very personal to her and I think she is trying hard to embarrass me (too late, I was embarrassed over this long before she chimed in) and I think she wants the entire world to see me as she does....fair or not.
I've known a lot of mothers with special needs kids and never have I run into one like her. Most of us never would think to judge one another because we all know that all our journeys to this place are very different along with our circumstances. Mostly though, we all know that being a mom of a disabled child is tough. There are no rule books and each child is different. How each family or parent handles this gift is different and to assume that "your way" is the only way is both arrogant and incorrect. So after taking in the events of this morning, I thought I would simply write a letter in a blog and clear the air.
Dear Debra,
First of all, let me say that I have nothing but respect for you. To be the mother of a disabled son who is in his 30's and for supporting him and caring for him all of these years, you are amazing in my book. I will say here though that I have no idea if your son lives with you or in assisted living. I also have no idea whether you are married, divorced, single or what. Truthfully it doesn't matter. All that does matter is that you took the gift God gave you all those years ago and you have done your best all of these years regardless of how tough it got (and you and I both know that it did from time to time) and you have taken care of him. Again, I have no idea what his disabilities are or how severe they are, but again....it doesn't matter. All that matters is that you have been the best mom you could be for this child and that deserves the up most respect from anyone you meet.
As for my situation......You seem to think you know my whole story. You do not. And that is okay, you don't have to. All you need to know is that I too am a special needs mom. I have worked and fought since the moment my son was born to make sure that his life was as good and positive as possible and that he was as well taken care of as possible. That in and of itself should be enough to garner the respect of others, especially those that know how difficult raising a disabled child can be. It apparently is not, so please, let me elaborate.
There have been times in my life as a mother, that I have worked 2-3 jobs that had me working from 5 a.m. until 1 a.m., sleeping only four hours per night. I am certainly not afraid of hard work and I have certainly done a great deal of it in my life. Since David's birth though, that has not always been possible. David has had many fragile years that have kept me home and close to him. There was simply no other way.
Then there were the times that I did work. I worked very hard and I loved every minute of it, but my employers always knew that David was my priority and when he was sick, in the hospital or having issues with seizures then I was by his side. That is how I view my role as his mother...to put him first at all times. And I can't just leave David with just anyone. David is non-verbal. He is a target for someone with less than compassionate care giving skills and yes, we have been down that road. David has been in the care of people who have verbally abused him, dropped him and neglected him. Once that happens, you trust very few people. Still and all, I have done my darndest to get respite care for him and I have been turned down every time because in order to get quality care, I would have to pay more than I would make at a job. So my not having an out of the home job is not laziness or lack of ambition.
You mentioned that I could be working while David was at school. True except for the fact that David has been out of school more days than he has been in school because of his health. He catches every bug that comes along because of his immune system. These usually cause fevers which spark his seizures. He also has really bad days with his muscles that make it almost impossible for him to get around. And then there are the nights where he doesn't sleep. This then means he can't function at school. Oh and the shunt malfunctions which happen out of nowhere. We had some real fun with that in January, with three shunt surgeries in 3 days. Now we have a spine surgery coming up which is going to take months to recuperate from. Add in to this all of his therapy appointments, specialist appointments and the intermittent doctor appointments and ER/hospital visits and you tell me how hirable I am.
What you probably don't know, is that when I am not taking care of David, I take care of another special needs lady daily. I take in laundry and ironing and yes I have been known to make the occasional cheesecake. I also clean, cook, do my own laundry, take care of my grand kids and help anyone who asks for my help and believe me, that happens more than you would think.
One of your greatest complaints seems to be that I have a large presence on facebook. Really, it is no more than anyone elses until recently. I run several facebook pages and it is all to give back to my community. I also spend a great deal of time trying to give back in other ways and encourage others to give back too. I spend a lot of time trying to hook people up who have needs with others who might help them. So yeah, I owe my community a lot and I try daily to show my appreciation.
Yes, I asked for help over this house situation. It was a situation that was both embarrassing and humbling and as someone pointed out, it was not the first time I had to ask. It was always for David though. Never for me. You also made a comment about me living off the system. That was especially offensive to me. I live off of social security death benefits. They are benefits that my late husband worked hard for so that he could take care of his family and because of this, he has been able to help continue to take care of us even since he's been gone. I have never used food stamps or taken welfare of any kind. That to me is for people that truly need that help and I would never take from people in need. So no, I don't live off the government or the system. I live off the money that my husband made while he was alive. There is absolutely no shame in that. And truth be known, even if I had been working a 40 hour a week job, if this had happened, I am sure I would still have needed help.
So Debra, I am still not sure why you find my situation so distasteful. It feels rather personal, but then again, it couldn't be.... because you don't know me. What I do know though is, we both have tough roads in this life and we are both doing our best to give our sons the best that we can, regardless of how that might look to the rest of the world. I also know that I admire your strength. It takes great strength to do what we do. And finally....I also know that if the time ever comes that you need help, there will be no question, no judgement and no memory of this current situation. All there will be is kindness, compassion and as much help as I can give you. After all, that is what it means to be a special needs mom.
Sincerely,
David's Mom
Why on earth would you have to explain yourself to this person? I surely hope she has more compassion with her son than she has shown you and your son. Honey, we all have tough times and there is nothing wrong with reaching out for help. It sounds to me like you give back far more than you take. Hold your head up high and don't you be embarrassed at all. You have my prayers
ReplyDeleteTry not to be afraid Lisa. I'm a special needs mother too. Honey, I know you are dealing with the fact that soon, David won't be in school anymore and you won't have that help. I was there myself a few years ago. We have few choices and we have our very lives curtailed to take care of these children. We aren't superwomen. Shame on that woman who is giving you grief. I'm sure The Lord will deal with her for her callous attitude towards you and David. Lean on the Lord. Ask for miracles, but be prepared, Lisa, because HE may have other plans for your living arrangement. I know you're more scared than you've been in a long time. Keep having faith. Listen to O My Soul by Casting Crowns. I listen to that song all the time. Don't give up. We're here for you.
ReplyDeleteAnd this is one of many reasons why we love and support you Lisa. With everything you are going through, you and still kind to someone who has been very hateful to you. You didn’t lose your temper like most of us would have. Your actions were to “do unto others and you would have them do unto you”. You are truest remarkable.
ReplyDeletePlease don’t ever feel like you owe and explanation, though I feel like you told her all that so she’d understand. She most likely won’t care. It seems her troubles are within herself and being full of resentment for her situation she is blind to others and theirs. Maybe say a prayer for her, then block her if she’s hateful again!
A few weeks ago I sent you an email from yourcaring page. You never contacted me. I wanted to see if there is anything I could do to help and your house situation. My email is jerromec@yahoo.com. My number is 316-312-6697. My facebook page is Titan Realty. Look me up.
ReplyDelete