Today Noah received his TAOS. He was less than thrilled. When Noah is upset it simply upsets me. I can't help it. It's like this built in mommy device that feels his pain. You might as well just stab me in the heart repeatedly and watch me bleed a thousands times over. It is the worst feeling in the world. I want to take it all away for him, all of his frustration, fear, anxiety, and to be able to restore his physical abilities that were stolen from him. There are days when I feel like I could scream with the pain that exists.
I'm not afraid to talk about how this journey makes me feel. I gave up counting the number of emails with negative, unsolicited advice many months ago. Some from well intentioned people, some from those who forget to think before they speak, and well simply others that I can come up with no excuses for. Words of encouragement and support most certainly help on days that are difficult, it helps to remind myself that I'm not utterly alone even though I often feel that I am. Chris and I do feel abandoned by those that should be there. I ran across a blog posting today in the land of special needs, that really says a lot. It is written by a father of a little girl named Katy, titled "The Five Things You Should Know About a Special Needs Family." It is located at: http://hope4katy.com/five-things-you-should-know-about-a-special-needs-family/
I'm not afraid to talk about how this journey makes me feel. I gave up counting the number of emails with negative, unsolicited advice many months ago. Some from well intentioned people, some from those who forget to think before they speak, and well simply others that I can come up with no excuses for. Words of encouragement and support most certainly help on days that are difficult, it helps to remind myself that I'm not utterly alone even though I often feel that I am. Chris and I do feel abandoned by those that should be there. I ran across a blog posting today in the land of special needs, that really says a lot. It is written by a father of a little girl named Katy, titled "The Five Things You Should Know About a Special Needs Family." It is located at: http://hope4katy.com/five-things-you-should-know-about-a-special-needs-family/
Todd, the author of Katy's blog states these as the five things you must know:
1) We're Ostracized
2) We're Jealous
3) We're Scared
4) We're good at hiding things/We're not good at hiding things
5) We're stronger than you realize/We're more fragile than you realize
All of it is true. Whether you want to acknowledge it or not we are ostracized. People will walk up to me in the mall and scold me for allowing my nearly three year old to still be in a stroller, by giving into his tantrums by holding him, for me still be "feeding him by a bottle." I want to shout at them how cruel they are to me, if they only understood, if they took a minute to be less than judgmental. Must I put him in a shirt that says "I am disabled" for people to get it? Yet I feel so alone that I lack any words in my time of need and become much that of a shrinking violet in my pain. My mother tries to force people that only want to give us unfavorable glances rather than speak to us, by starting small talk in elevators. Some are simply too uncomfortable to pay us any attention, some unwillingly give in to a simple hello. How do I change the world on my own? How do I get everyone to realize what we're going through? How do I make everyone understand and love us despite the fact we are so different from most families? We don't get the luxury of attending parties or bar-b-ques, going out to dinner, or really gatherings of any kind. We have to think about the fact we don't have seating for Noah, that he'll be uncomfortable and irritable, that we won't blend in with everyone. We've become that family that you want to stare at like a freak show.
Todd's second item is jealously, although I feel a bit more like it's envy. Sure it aches when I see a child Noah's age running, playing, talking and hugging their parent. I even adore those that act out and wish I could intervene when their parents are disciplining them over something so minor like asking for a piece of candy in the check out lane in the grocery store. I want to tell them I only dream that my child could ask me for candy, I'd buy him the whole shelf if I could. I like Todd, also feel tremendously proud of Noah for he struggles for every single accomplishment, yet a part of my heart will always yearn for him to be like other children that can run about.
The third item: We're scared. Yep. Super scared. We're scared of things we didn't even realize we were scared of yesterday. Are we doing enough? How do I get the equipment he needs when Medicaid won't help? Are we making the right decisions that will better his life? Should sell everything we own and attempt stem cells in another country? How do I protect my child when I die from being put into a group home or institutionalized? Who will care for him and love him when we are gone? We worry about the future just as much as we worry about the present. Our fears are tremendous and endless. Just like Todd mentions, everything involved with caring for a special needs child costs way more than it should. It is not an exaggeration. When I tell you there is no help to get Noah's needs met I am telling you the honest truth. This is the truth of our lives. We are much forgotten members of society. We need help that isn't there. The government, family, friends, medical and therapeutic professionals all turn a deaf ear.
The fourth item: We're good at hiding things and not so good at hiding things. That is something that Chris and I try to find a balance on. We have always been private people. Noah's blogs emerged out of great pain of those inquiring initially about his condition, and us being to distraught to verbalize it. It's developed into a testimonial of what we've been through and what we're currently experiencing, while offering to the world I hope a sense of hope that this little boy named Noah has the ability to beat the odds against him. I want someone to read this one day and say look where he started from and where he is today. I want his story to restore faith and offer hope when all feels lost. I want Noah's story to teach others to challenge thoughts and inspire change. There are days when I can put on a great face and smile and laugh like there's not a care in the world, when in reality I could be so sad and crying in the inside. I've learned fast people don't want to be around you if you are sad, you bring them down. They don't want to hear your problems. I'm expected to act like I can handle everything at all times. Reading Todd's number four was difficult for me, because many forget that Chris is along side with me in all of this too. Even though I am the one writing Noah's blog, this is all very hard for him too. There are many days when we cry together. We are all each other has. It is hard to discuss all of these emotions in a public forum, so many of us put ourselves out there only to get slammed down. Just like Todd, we often times contemplate if we should even hit the post button and publish what is truly in our hearts and on our minds. We are judged just like our special needs children are.
We are stronger and more fragile than you realize. The last two and a half years have forced me to be stronger in ways I never imagined I could be, in ways I never wanted to be. I've learned to be more assertive for a child that has no voice, to stand up one hundred percent for what I believe in, even if it makes me completely unpopular. Chris and I never forget how fragile Noah really is. We know a common cold could be worse for him than the average child, that medical treatments that are safer for other children, could pose a life-threatening event on his life. We are more sensitive, and feel pain more intensely. Words cut through us quickly even if we don't display the initial pain.
Todd suggests these are what you can do:
"Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and strain take their toll. We're just trying our best to survive. We wish people might see through the facade every once in a while and understand that we appreciate the slightest effort to make us feel... special."
If you happen to stop by Todd's blog about his daughter Katy. Please remember we all need a little kindness and support.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
1) We're Ostracized
2) We're Jealous
3) We're Scared
4) We're good at hiding things/We're not good at hiding things
5) We're stronger than you realize/We're more fragile than you realize
All of it is true. Whether you want to acknowledge it or not we are ostracized. People will walk up to me in the mall and scold me for allowing my nearly three year old to still be in a stroller, by giving into his tantrums by holding him, for me still be "feeding him by a bottle." I want to shout at them how cruel they are to me, if they only understood, if they took a minute to be less than judgmental. Must I put him in a shirt that says "I am disabled" for people to get it? Yet I feel so alone that I lack any words in my time of need and become much that of a shrinking violet in my pain. My mother tries to force people that only want to give us unfavorable glances rather than speak to us, by starting small talk in elevators. Some are simply too uncomfortable to pay us any attention, some unwillingly give in to a simple hello. How do I change the world on my own? How do I get everyone to realize what we're going through? How do I make everyone understand and love us despite the fact we are so different from most families? We don't get the luxury of attending parties or bar-b-ques, going out to dinner, or really gatherings of any kind. We have to think about the fact we don't have seating for Noah, that he'll be uncomfortable and irritable, that we won't blend in with everyone. We've become that family that you want to stare at like a freak show.
Todd's second item is jealously, although I feel a bit more like it's envy. Sure it aches when I see a child Noah's age running, playing, talking and hugging their parent. I even adore those that act out and wish I could intervene when their parents are disciplining them over something so minor like asking for a piece of candy in the check out lane in the grocery store. I want to tell them I only dream that my child could ask me for candy, I'd buy him the whole shelf if I could. I like Todd, also feel tremendously proud of Noah for he struggles for every single accomplishment, yet a part of my heart will always yearn for him to be like other children that can run about.
The third item: We're scared. Yep. Super scared. We're scared of things we didn't even realize we were scared of yesterday. Are we doing enough? How do I get the equipment he needs when Medicaid won't help? Are we making the right decisions that will better his life? Should sell everything we own and attempt stem cells in another country? How do I protect my child when I die from being put into a group home or institutionalized? Who will care for him and love him when we are gone? We worry about the future just as much as we worry about the present. Our fears are tremendous and endless. Just like Todd mentions, everything involved with caring for a special needs child costs way more than it should. It is not an exaggeration. When I tell you there is no help to get Noah's needs met I am telling you the honest truth. This is the truth of our lives. We are much forgotten members of society. We need help that isn't there. The government, family, friends, medical and therapeutic professionals all turn a deaf ear.
The fourth item: We're good at hiding things and not so good at hiding things. That is something that Chris and I try to find a balance on. We have always been private people. Noah's blogs emerged out of great pain of those inquiring initially about his condition, and us being to distraught to verbalize it. It's developed into a testimonial of what we've been through and what we're currently experiencing, while offering to the world I hope a sense of hope that this little boy named Noah has the ability to beat the odds against him. I want someone to read this one day and say look where he started from and where he is today. I want his story to restore faith and offer hope when all feels lost. I want Noah's story to teach others to challenge thoughts and inspire change. There are days when I can put on a great face and smile and laugh like there's not a care in the world, when in reality I could be so sad and crying in the inside. I've learned fast people don't want to be around you if you are sad, you bring them down. They don't want to hear your problems. I'm expected to act like I can handle everything at all times. Reading Todd's number four was difficult for me, because many forget that Chris is along side with me in all of this too. Even though I am the one writing Noah's blog, this is all very hard for him too. There are many days when we cry together. We are all each other has. It is hard to discuss all of these emotions in a public forum, so many of us put ourselves out there only to get slammed down. Just like Todd, we often times contemplate if we should even hit the post button and publish what is truly in our hearts and on our minds. We are judged just like our special needs children are.
We are stronger and more fragile than you realize. The last two and a half years have forced me to be stronger in ways I never imagined I could be, in ways I never wanted to be. I've learned to be more assertive for a child that has no voice, to stand up one hundred percent for what I believe in, even if it makes me completely unpopular. Chris and I never forget how fragile Noah really is. We know a common cold could be worse for him than the average child, that medical treatments that are safer for other children, could pose a life-threatening event on his life. We are more sensitive, and feel pain more intensely. Words cut through us quickly even if we don't display the initial pain.
Todd suggests these are what you can do:
"Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and strain take their toll. We're just trying our best to survive. We wish people might see through the facade every once in a while and understand that we appreciate the slightest effort to make us feel... special."
If you happen to stop by Todd's blog about his daughter Katy. Please remember we all need a little kindness and support.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.