So, this is another note I received on the Parents of Special Needs group from FB I'm on. I think is a sweet way of looking at things, however, I do have to disagree with one thing. I do not ever see a child as less than perfect because of their "handicap" or "special needs." They may not be the "norm" of the world, but the wonderful little spirit inside of them is perfection we should all admire. Their innocence, or even just their strength to overcome the ways of the world that do not conform to their needs is very admirable. People with special needs have to over come obstacles, things we take for granted everyday.
Now, as far as this note goes, I think this is beautiful. As a mother of a special need's child, I have often felt inadequate, nervous, scared, stressed, overwhelmed, & have asked God many times why he felt that it was right for me to be Emily's momma. Not because I was upset to have her, but because I want to be, & have to be everything Emily needed, needs now & will ever need. I have felt many times he put a confidence in me that is very hard to live up to. Luckily, I find myself on my knees in prayer, asking for strength, guidance & help(sometimes patience, too!). Other times, I find myself in my husbands arms, asking him to hold me up for a while when I feel I cannot handle things, & need a break.
This is called "The Special Mother":
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
I don't mean to "toot my own horn" about being blessed with a special need's child, please know that. However, it is nice, to know that through the extra things we have to endure as parents of these children, that we can look at things this way. Nice to maybe see some of the confidence Heavenly Father has placed in us, & a reminder that we have to continue to love, care for & go to bat for our kids when they need us. Please take this in the sweet spirit it was intended to be. I have to say, the part about rising above the "ignorance, cruelty & prejudice" has come in quite handy : )
Okay, I bet people are tired of these posts now, I just had to share, these really touched me & were something I needed to read & remember. Hugs to all!
Tuesday, October 11, 2011
Welcome to Holland!
Okay, I could cry, I had a whole freaking blog post made, ready to post, clicked one thing, & it was ALL gone!!! SO, I am starting ALL over. So annoying, & I can't remember half of what I said. So angry!!!! It's supposed to save it, but it's just gone, even the undo crap in editing wouldn't work. Sometimes I seriously hate learning to blog.
Okay, so, to get back on track(SO FRUSTRATING) I am a part of a group on Facebook for LDS Parents of Special Needs Children. Recently someone posted something that I thought was beautiful. Man I worded this so well in my previous post that got deleted, & now I am sure I will just butcher it :/
SO, I just have to put as a disclaimer before I post it, that this is in regards to any kind of special needs, I do not see blindness as something to be sad or angry about, or that there is anything wrong with being blind. This is simply from a parents perspective of finding out that their child has any kind of special needs. Anytime you find out your child has a special need of some kind, you do(or at least I did), go through a grieving process, I just felt this author put so perfectly, what is so hard to put into words on how that feels.
Emily is perfect just the way she is, I have told her that probably a million times already. Our children are beautiful & meant to be just the way they are. They may not fit into the "Worlds idea of what the "norm" should be" but they are exactly who & how they should be. We need to learn from them & be grateful for the example they can be to us.
This is the article(I have cried like 3 times already reading it, it just is so close to my heart):
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I won't say this is how ALL parents of special need's children feel, but this is very much how I felt. I wasn't angry so much that she's blind(blind people are just like everyone else), it was more of an anger for the added difficulties she will probably(& already has) experienced in her life because of it. Please, everyone, remember, you are perfect the way you are, & when you see someone different, remember, not everyone has to be from Italy, Holland is beautiful. I am SO grateful for my beautiful, sweet little Holland my Heavenly Father in trusted to me. Emily is my angel, & I learn from her everyday.
I wish my first post wouldn't have been lost, I had something else in it I wanted to say & can't remember now. I just thought this was too sweet to share. I've been asked before how you feel when you have a special need's child, & it can be so hard to explain. Please, take this to heart, she covers how I've felt very well, & while it is still painful, you have to enjoy, the very beautiful, wonderful, special things about your your Holland <3
Okay, so, to get back on track(SO FRUSTRATING) I am a part of a group on Facebook for LDS Parents of Special Needs Children. Recently someone posted something that I thought was beautiful. Man I worded this so well in my previous post that got deleted, & now I am sure I will just butcher it :/
SO, I just have to put as a disclaimer before I post it, that this is in regards to any kind of special needs, I do not see blindness as something to be sad or angry about, or that there is anything wrong with being blind. This is simply from a parents perspective of finding out that their child has any kind of special needs. Anytime you find out your child has a special need of some kind, you do(or at least I did), go through a grieving process, I just felt this author put so perfectly, what is so hard to put into words on how that feels.
Emily is perfect just the way she is, I have told her that probably a million times already. Our children are beautiful & meant to be just the way they are. They may not fit into the "Worlds idea of what the "norm" should be" but they are exactly who & how they should be. We need to learn from them & be grateful for the example they can be to us.
This is the article(I have cried like 3 times already reading it, it just is so close to my heart):
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I won't say this is how ALL parents of special need's children feel, but this is very much how I felt. I wasn't angry so much that she's blind(blind people are just like everyone else), it was more of an anger for the added difficulties she will probably(& already has) experienced in her life because of it. Please, everyone, remember, you are perfect the way you are, & when you see someone different, remember, not everyone has to be from Italy, Holland is beautiful. I am SO grateful for my beautiful, sweet little Holland my Heavenly Father in trusted to me. Emily is my angel, & I learn from her everyday.
I wish my first post wouldn't have been lost, I had something else in it I wanted to say & can't remember now. I just thought this was too sweet to share. I've been asked before how you feel when you have a special need's child, & it can be so hard to explain. Please, take this to heart, she covers how I've felt very well, & while it is still painful, you have to enjoy, the very beautiful, wonderful, special things about your your Holland <3
Monday, September 12, 2011
Blindness has been a blessing!
I know, some people might read the title of this post, & think "what!"? But, I have been going over & over things, people, places, groups, etc. that we would otherwise not have been aware of, or a part of without Emily being blind. Now, yes, Emily does have her own set of challenges, that are unique to her, most people who are blind, don't have any of the "extra" special need's that Emily has right now(just to clarify, these are unique to Em), but I am so grateful for the examples & high expectations the blind community has & achieves everyday that my baby girl will be a part of. I cannot wait for Emily to follow in their footsteps, & to put all the "assumptions" or "blindness myths" to bed!
There is a group called the NFB(National Federation of the Blind), & I have been recalling the D.C. Seminar I attended last Jan. when we went to Capitol Hill to advocated & fight for blind rights. I pray I get to go again this coming January! I know that the stress & battles we fight now, build the future for our blind children to have successful lives in a sighted & hopefully educated world. The NFB's motto is "Blindness is NOT a tragedy!" I love, love, love this. I want people to realize that blindness isn't cancer, it doesn't have to be "fixed."
For Emily, specifically, there is not a "cure." So far, I have been kind of grateful for that, because I want her to know there's nothing wrong with her. That she's a perfect, fun, loving, smart, beautiful, silly, wonderful girl!
All of this was brought on by our "field trip" this weekend with Emily's therapy center, Faith Pediatric Rehabilitation. Now, I've always been grateful for the groups we are a part of, TPOBC, KDT, NOPBC, NFB, etc. They are AMAZING, but I didn't have this blog until a few weeks ago, so I am blogging about this, lol. This weekend, it was celebrating FPR's 5 yr. anniversary, & Faith, the owner, is Em's OT, & she's amazing. We are SO grateful for her & her practice. It just meant a lot to go & have such a wonderful time with ladies who dedicate their lives to caring, loving & helping our children, blind or sighted, she's treated the same.
We will strive for Emily to be a successful braille reader, HS graduate, hopefully a college grad.(I haven't been to college yet, so I can't hold that against anyone, lol), & a thriving young woman(which I am so not ready yet for that, lol). I know I wouldn't be who I am, the kind of person I am, I know my family & those around us wouldn't have the knowledge we do now, or have the special experiences we are blessed to have if Emily wasn't a part of our family. I am so grateful for my family & for the "little" things we get to witness everyday as Emily grows up.
Last thing, on Saturday, on our field trip, Emily was on a swing, & she went "WEEEEEEE!!!!" with the BIGGEST smile! Now, to anyone else, they might think "K....big deal" but for Lou & I we were smiling, clapping, & cheering her on so proudly. When you have special need's, you learn to appreciate everything! She already has come so far speech wise. I love being around other blind children & seeing how well they are doing, it helps to encourage us that one day Emily won't be like a "sighted kid," she will be as independent, & strong as another "blind" kid : )
Okay, I'm off my proud parent of a blind child soap box now. Everyone, educate yourselves, support, & promote independence!
There is a group called the NFB(National Federation of the Blind), & I have been recalling the D.C. Seminar I attended last Jan. when we went to Capitol Hill to advocated & fight for blind rights. I pray I get to go again this coming January! I know that the stress & battles we fight now, build the future for our blind children to have successful lives in a sighted & hopefully educated world. The NFB's motto is "Blindness is NOT a tragedy!" I love, love, love this. I want people to realize that blindness isn't cancer, it doesn't have to be "fixed."
For Emily, specifically, there is not a "cure." So far, I have been kind of grateful for that, because I want her to know there's nothing wrong with her. That she's a perfect, fun, loving, smart, beautiful, silly, wonderful girl!
All of this was brought on by our "field trip" this weekend with Emily's therapy center, Faith Pediatric Rehabilitation. Now, I've always been grateful for the groups we are a part of, TPOBC, KDT, NOPBC, NFB, etc. They are AMAZING, but I didn't have this blog until a few weeks ago, so I am blogging about this, lol. This weekend, it was celebrating FPR's 5 yr. anniversary, & Faith, the owner, is Em's OT, & she's amazing. We are SO grateful for her & her practice. It just meant a lot to go & have such a wonderful time with ladies who dedicate their lives to caring, loving & helping our children, blind or sighted, she's treated the same.
We will strive for Emily to be a successful braille reader, HS graduate, hopefully a college grad.(I haven't been to college yet, so I can't hold that against anyone, lol), & a thriving young woman(which I am so not ready yet for that, lol). I know I wouldn't be who I am, the kind of person I am, I know my family & those around us wouldn't have the knowledge we do now, or have the special experiences we are blessed to have if Emily wasn't a part of our family. I am so grateful for my family & for the "little" things we get to witness everyday as Emily grows up.
Last thing, on Saturday, on our field trip, Emily was on a swing, & she went "WEEEEEEE!!!!" with the BIGGEST smile! Now, to anyone else, they might think "K....big deal" but for Lou & I we were smiling, clapping, & cheering her on so proudly. When you have special need's, you learn to appreciate everything! She already has come so far speech wise. I love being around other blind children & seeing how well they are doing, it helps to encourage us that one day Emily won't be like a "sighted kid," she will be as independent, & strong as another "blind" kid : )
Okay, I'm off my proud parent of a blind child soap box now. Everyone, educate yourselves, support, & promote independence!
Thursday, September 1, 2011
Overview I wanted to share here, too...
So, I recently joined a blog for parents of special need's children, & I posted about my family to introduce ourselves & more about Emily. I figured, some people may not know many details(not that this communicated half of the details, just an overview, really), but I am posting it on mine if people would like to read it:
Hi, my name is Liz, & I am new to this group. It was introduced to me by another parent of a special need's child. My husband, Louis & I, & our two girls, Emily & Leah live in Texas. My daughter Emily is 6 yr. old, & was diagnosed with Optic Nerve Hypoplasia with Septo Optic Dysplasia at the age of 5 mo. She is mostly blind, with what little vision she does have being inconsistent, non functional & not useable. She is our angel girl & it has taken years to finally recognize that "blindness is not a tragedy." Her blindness has affected many other area's of her development. She is mostly non-verbal, in the fact that she will randomly verbalize, but it's not usually intentional, or appropriate. She cannot communicate yet, her wants or needs, which can be frustrating at times, on both sides.
She has some mobility issues with hypotonia(low muscle tone), etc. & developmentally is only up to a 2-3 yr. old in many areas, some areas even less. Emily also was diagnosed with PDD-NOS, not because she is truly autistic, but that because of her sensory needs due to blindness, she has many autistic like traits/behaviors, so we find the same therapies help her get alot of the sensory input that she needs. 80% of our sensory input is sight related, so without her sight, she is always so "sensory hungry."
We are blessed to have a wonderful private OT who also provides her aqua therapy, & we have a wonderful speech path that has been with us for 3 years now who helped Emily go from baby babble if we were lucky, to a 72 word vocab. Now we are just working on trying to get her to use it intentionally, instead of randomly. Her younger sister, Leah, is only 3 years old, but has really taken on the role of being the big sister & helping to guide Emily around, etc.
I love both my girls, & it's a journey everyday. We are blessed to be on this road together. It has had it's many up's & downs. I didn't handle all of this too well to start(who does?), & I don't know where her path will lead, or what independence she may or may not have one day, but that's how we do this, one day at a time, adapting everyday to a sighted world, helping her to communicate, love, & be proud of herself. Blindness is a "low incidence" population as I have been told many times, especially when they are as delayed as Emily, but I love meeting other parents of children with special need's, & hearing about your journeys. I don't know where I would be as her parent without the support of my husband. He is such a hand's on dad, & Emily is the biggest daddy's girl there ever was.
I look forward to getting to know & read about everyone's experiences. God Bless- The Johnson Fam!
Anyway, I'm always open for questions, etc. about anything, especially Emily, blindness, etc. so if anything I ever blog about sparks a question, ask away : )
Hi, my name is Liz, & I am new to this group. It was introduced to me by another parent of a special need's child. My husband, Louis & I, & our two girls, Emily & Leah live in Texas. My daughter Emily is 6 yr. old, & was diagnosed with Optic Nerve Hypoplasia with Septo Optic Dysplasia at the age of 5 mo. She is mostly blind, with what little vision she does have being inconsistent, non functional & not useable. She is our angel girl & it has taken years to finally recognize that "blindness is not a tragedy." Her blindness has affected many other area's of her development. She is mostly non-verbal, in the fact that she will randomly verbalize, but it's not usually intentional, or appropriate. She cannot communicate yet, her wants or needs, which can be frustrating at times, on both sides.
She has some mobility issues with hypotonia(low muscle tone), etc. & developmentally is only up to a 2-3 yr. old in many areas, some areas even less. Emily also was diagnosed with PDD-NOS, not because she is truly autistic, but that because of her sensory needs due to blindness, she has many autistic like traits/behaviors, so we find the same therapies help her get alot of the sensory input that she needs. 80% of our sensory input is sight related, so without her sight, she is always so "sensory hungry."
We are blessed to have a wonderful private OT who also provides her aqua therapy, & we have a wonderful speech path that has been with us for 3 years now who helped Emily go from baby babble if we were lucky, to a 72 word vocab. Now we are just working on trying to get her to use it intentionally, instead of randomly. Her younger sister, Leah, is only 3 years old, but has really taken on the role of being the big sister & helping to guide Emily around, etc.
I love both my girls, & it's a journey everyday. We are blessed to be on this road together. It has had it's many up's & downs. I didn't handle all of this too well to start(who does?), & I don't know where her path will lead, or what independence she may or may not have one day, but that's how we do this, one day at a time, adapting everyday to a sighted world, helping her to communicate, love, & be proud of herself. Blindness is a "low incidence" population as I have been told many times, especially when they are as delayed as Emily, but I love meeting other parents of children with special need's, & hearing about your journeys. I don't know where I would be as her parent without the support of my husband. He is such a hand's on dad, & Emily is the biggest daddy's girl there ever was.
I look forward to getting to know & read about everyone's experiences. God Bless- The Johnson Fam!
Anyway, I'm always open for questions, etc. about anything, especially Emily, blindness, etc. so if anything I ever blog about sparks a question, ask away : )
Tuesday, August 30, 2011
Trying this blogging thing again!
So, I've tried this blogging thing before, & didn't do too well at it. I have a new email address, & am going to try it out again! : ) My name is Liz, my hubby & our two girls live in Texas. We are always crazy busy, but I think that it makes life more of an adventure!
I am a stay at home mom(stupid title considering how often I'm not at home!), my husband is a nurse, although he's in school to get his CRNA, Emily is 6 yr. old, my sweet angel girl & is in her 3rd year of PPCD at school, & Leah is 3 yr. old & a ball of crazy fun energy! Emily is kind of what we live our life around. Emily was born blind due to ONH/SOD(google it), & she has many developmental delay's because of it. It's taken me a long time to get to the healthy place I am with all of this, but I am glad I have been introduced to many wonderful people & organizations to help her along her path in this life.
I look forward to posting about our fun times, hard times, random times, & my random thoughts/rants. My sister's blog is hilarious, maybe I can get there one day : ) Until then, send me a message or follow along as I try to post about our beautiful crazy life <3
I am a stay at home mom(stupid title considering how often I'm not at home!), my husband is a nurse, although he's in school to get his CRNA, Emily is 6 yr. old, my sweet angel girl & is in her 3rd year of PPCD at school, & Leah is 3 yr. old & a ball of crazy fun energy! Emily is kind of what we live our life around. Emily was born blind due to ONH/SOD(google it), & she has many developmental delay's because of it. It's taken me a long time to get to the healthy place I am with all of this, but I am glad I have been introduced to many wonderful people & organizations to help her along her path in this life.
I look forward to posting about our fun times, hard times, random times, & my random thoughts/rants. My sister's blog is hilarious, maybe I can get there one day : ) Until then, send me a message or follow along as I try to post about our beautiful crazy life <3
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