This past Friday, I was at work when I received a text from Kennedy's FABULOUS teacher telling me that she was sending home a progress report for me to see. In fact, she said it would be perfect blog material. :) So I picked Kennedy up and before I even got her in the car, I was searching through her backpack for the progress report that I had anticipated seeing all afternoon. The report listed the class average and also listed Kennedy's individual score. And........wait for it.........she was AT or ABOVE the class average on all but one score!!!! I almost couldn't believe it!! She scored "at exceptation" on nearly every score except one in which she scored "approaching expectation."
We recently got Kennedy's report card as well and again, it was progress across the board. She has consistently made improvements throughout the school year. Of course, we still have things to work on, I love seeing the progress every quarter.
How's that for a child that I was told would "probably always be in special classes" and may never be as smart as other kids?? That just goes to show that doctors are not always right. Unfortunately, I think too many times, when doctors give their "professional opinions," we have a tendency to believe nothing more (or less) is possible. Sure, I could have given up on Kennedy, and at times I was probably closer to giving up than I care to admit. But where would Kennedy be today if I hadn't pushed her to do her very best? I would have only held her back and not seen her potential! And who knows what that child is capable of accomplishing in her lifetime. I could have just heard her diagnosis, came home, and not expected much from her while we watched our lives waste away. But instead, I've pushed her and encouraged her to become independent. I'm not always going to be on this earth and it's my job to prepare Kennedy to be self-sufficient. I don't baby her---at least not too much any more. And now, I have a bright little girl who is holding her own in a regular Kindergarten classroom! A little girl, by the way, that tells me every morning that she wants to "go to Western" she she grows up. I think that's a pretty realistic dream if I say so myself!
Tuesday, March 29, 2011
Tuesday, March 22, 2011
Emily Perl Kingsley's "Welcome to Holland"
I came across this BEAUTIFUL story this past weekend when I was feeling down and out with our situation. It has helped me tremendously and really puts into perspective how it feels to grieve the loss of a "normal" child. Enjoy this beautiful story by Emily Perl Kingsley (1987).
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.
Monday, March 21, 2011
How God chooses parents for special needs kids
(I found this story yesterday and it has really stuck with me throughout the day today. I just wanted to share.....)
Most people become parents by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 couples will become parents of handicapped children. Did you ever wonder how parents 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, Matthew. Forrest, Michael, daughter, patron saint, Cecilia. "Rudledge, Carrie and Adam, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes two names to an angel and smiles, "Give them a special needs child."
The angel is curious. "Why this one, God? They're so happy."
"Exactly," says God. "Could I give a special needs child to parents who do not know laughter? That would be cruel."
"But have they patience?" asks the angel.
"I don't want them to have too much patience or they will drown in a sea of self-pity and despair. Once the shock and resentment wear off, they'll handle it.
"I watched them today. They have that feeling of self and dependence that is so rare and so necessary in a mother and father. You see, the child I'm going to give them has his own world. They have to make it living in that world, and that's not going to be easy."
"But, Lord, I don't think they even believe in you."
God smiles. "No matter. I can fix that. These two are perfect. They have just enough selfishness. "
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If they can't separate themselves from the child occasionally, they'll never survive. Yes, here is a woman and a man whom I will bless with a child less than perfect. They doesn't realize it yet, but they are going to be envied. They will never take for granted a 'spoken word.' They will never consider a 'step' ordinary. When their child says 'Momma' for the first
time, they will be present at a miracle and know it! When they describea tree or a sunset to their blind child, they will see it as few people ever see my creations.
"I will permit them to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow them to rise above them. They will never be alone. I will be at their side every minute of every day of their life, because they are doing my work as surely as they are here by my side."
"And what about their patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
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, Matthew. Forrest, Michael, daughter, patron saint, Cecilia. "Rudledge, Carrie and Adam, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes two names to an angel and smiles, "Give them a special needs child."
The angel is curious. "Why this one, God? They're so happy."
"Exactly," says God. "Could I give a special needs child to parents who do not know laughter? That would be cruel."
"But have they patience?" asks the angel.
"I don't want them to have too much patience or they will drown in a sea of self-pity and despair. Once the shock and resentment wear off, they'll handle it.
"I watched them today. They have that feeling of self and dependence that is so rare and so necessary in a mother and father. You see, the child I'm going to give them has his own world. They have to make it living in that world, and that's not going to be easy."
"But, Lord, I don't think they even believe in you."
God smiles. "No matter. I can fix that. These two are perfect. They have just enough selfishness. "
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If they can't separate themselves from the child occasionally, they'll never survive. Yes, here is a woman and a man whom I will bless with a child less than perfect. They doesn't realize it yet, but they are going to be envied. They will never take for granted a 'spoken word.' They will never consider a 'step' ordinary. When their child says 'Momma' for the first
time, they will be present at a miracle and know it! When they describea tree or a sunset to their blind child, they will see it as few people ever see my creations.
"I will permit them to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow them to rise above them. They will never be alone. I will be at their side every minute of every day of their life, because they are doing my work as surely as they are here by my side."
"And what about their patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
Sunday, March 20, 2011
Here Goes
I'm guessing that the first post of any blog should include a slight explaination of the purpose of it's existence. So here goes....
For the last week or so, I feel that God has been calling me to start a blog for several reasons. First, I need an outlet. As the parent of a special needs chld, life can be somewhat isolating. And it's not that friends and other people I know aren't supportive of our situation, I fully realize that I am completely capable of isolating myself from others. But I admit it's a flaw and I'm working on that. Unfortunately, while I try on a daily basis not to compare my child with other children, it's nearly impossible not to. And while I greatly enjoy meeting other moms that understand the sacrifices one must make for their children, very rarely do I come across a mother that understands raising a child that has special needs. This weekend, for instance, has been very difficult for me. I was at a gathering with several other moms and they are all talking about their 6-year-olds learning foreign languages and playing musical instruments. That's definitely something to brag about. But the self-pity came out in me and I was broken. What in the world could I contibute to a conversation like that? Especially as she was coming up to me because she couldn't get her shoes on by herself. Should I chime in and say "Hey, my child learned how to say (insert basic English word) correctly this week!" I can only imagine that I would appear sarcastic toward other moms, despite the fact that this was a major accomplishment for my child. I can't imagine Kennedy being at a point where she could speak another language or play an instrument. Right now, I just want her to figure out how to hold a pencil or to be able to correctly pronounce certain sounds (and there are SO many that need to be correcting). It's a mother's nature, I know, to brag about the things that a child can accomplish, but when the "small" things are "big" things with my child, I feel that my stories just would never stack up against the rest. And I highly doubt other moms would even come close to understanding how proud I was of Kennedy acheiving something their 2-year-old is doing flawlessly. I also feel that I always have to justify things for Kennedy. I have to explain that we can participate in certain group outings because Kennedy has to get in bed by 7:30 or she's more prone to seizures. Or I have to explain that Kennedy is so messy when she eats because she has tremors in her limbs that my it difficult not to spill things on her. I feel like every moment I am awake, I'm constantly explaining why my child doesn't quite measure up to society's definition of "normal." (I hate that word)
So this leads me to the second reason I feel called to start this blog. If I look back over the last few months and even years, I can see so much that Kennedy has accomplished! But it's the day-to-day life that can seem so daunting. Often, it's hard to take it "one day at a time" when little or no progress can be seen in one day. This "chronicle" so to speak can be a testimony of God's work in my child. So that when times get tough and it seems that she is making no progress at all, I can go back and look at the things she has accomplished over time. For instance, I was told Kennedy would never walk or talk.
(Let me insert at this point that my entire computer had just shut down and I thought I had lost this entire post. I think someone is trying to work against me here, if you know what I mean)
Back to my thought......I was told that Kennedy would never walk or talk. And while I am so incredibly thankful for God's blessings, sometimes it's very hard to lose sight of what she has accomplished because I'm constantly being reminded of the things she can't do. By sharing the accomplishments here, I'll be able to go back during those stormy times and look at all that she was able to do despite being told she "couldn't" do it. I feel that God wants me to do this so that when I'm struggling to get myself out of bed and I'm asking "Where are you, God?" I can see that he's been here all along, even when I couldn't see Him. In the past, I have been so angry with God because I know He has the power to take this away, but He hasn't. And I keep reminding myself of Jeremiah 29:11 (my favorite) and that God has a plan for us.
As I said earlier, I had a self-pity moment this weekend after the gathering I attended yesterday and I've struggled with every minute this entire weekend with sadness and pessimism. Our family got up this morning to get ready for church and I told my husband, Jeremy, that I just couldn't go. I was just so down and out and while my head was telling me that church was where I needed to be, my heart was begging me to go back to bed and sleep the day away. But I gathered myself and we went to church and I heard the exact message that I needed to hear. The sermon was on seeing past your problems to God and how important it is to look to God when you are going through the good AND the bad times in life. It's something I struggle with, but I'm starting today. While I know this won't be an easy journey, I am making a choice to strengthen my relationship with God and not to stray when times get rough down this road. Thanks for joining me in this process and I look forward to sharing Kennedy's successes with you along the way.
For the last week or so, I feel that God has been calling me to start a blog for several reasons. First, I need an outlet. As the parent of a special needs chld, life can be somewhat isolating. And it's not that friends and other people I know aren't supportive of our situation, I fully realize that I am completely capable of isolating myself from others. But I admit it's a flaw and I'm working on that. Unfortunately, while I try on a daily basis not to compare my child with other children, it's nearly impossible not to. And while I greatly enjoy meeting other moms that understand the sacrifices one must make for their children, very rarely do I come across a mother that understands raising a child that has special needs. This weekend, for instance, has been very difficult for me. I was at a gathering with several other moms and they are all talking about their 6-year-olds learning foreign languages and playing musical instruments. That's definitely something to brag about. But the self-pity came out in me and I was broken. What in the world could I contibute to a conversation like that? Especially as she was coming up to me because she couldn't get her shoes on by herself. Should I chime in and say "Hey, my child learned how to say (insert basic English word) correctly this week!" I can only imagine that I would appear sarcastic toward other moms, despite the fact that this was a major accomplishment for my child. I can't imagine Kennedy being at a point where she could speak another language or play an instrument. Right now, I just want her to figure out how to hold a pencil or to be able to correctly pronounce certain sounds (and there are SO many that need to be correcting). It's a mother's nature, I know, to brag about the things that a child can accomplish, but when the "small" things are "big" things with my child, I feel that my stories just would never stack up against the rest. And I highly doubt other moms would even come close to understanding how proud I was of Kennedy acheiving something their 2-year-old is doing flawlessly. I also feel that I always have to justify things for Kennedy. I have to explain that we can participate in certain group outings because Kennedy has to get in bed by 7:30 or she's more prone to seizures. Or I have to explain that Kennedy is so messy when she eats because she has tremors in her limbs that my it difficult not to spill things on her. I feel like every moment I am awake, I'm constantly explaining why my child doesn't quite measure up to society's definition of "normal." (I hate that word)
So this leads me to the second reason I feel called to start this blog. If I look back over the last few months and even years, I can see so much that Kennedy has accomplished! But it's the day-to-day life that can seem so daunting. Often, it's hard to take it "one day at a time" when little or no progress can be seen in one day. This "chronicle" so to speak can be a testimony of God's work in my child. So that when times get tough and it seems that she is making no progress at all, I can go back and look at the things she has accomplished over time. For instance, I was told Kennedy would never walk or talk.
(Let me insert at this point that my entire computer had just shut down and I thought I had lost this entire post. I think someone is trying to work against me here, if you know what I mean)
Back to my thought......I was told that Kennedy would never walk or talk. And while I am so incredibly thankful for God's blessings, sometimes it's very hard to lose sight of what she has accomplished because I'm constantly being reminded of the things she can't do. By sharing the accomplishments here, I'll be able to go back during those stormy times and look at all that she was able to do despite being told she "couldn't" do it. I feel that God wants me to do this so that when I'm struggling to get myself out of bed and I'm asking "Where are you, God?" I can see that he's been here all along, even when I couldn't see Him. In the past, I have been so angry with God because I know He has the power to take this away, but He hasn't. And I keep reminding myself of Jeremiah 29:11 (my favorite) and that God has a plan for us.
As I said earlier, I had a self-pity moment this weekend after the gathering I attended yesterday and I've struggled with every minute this entire weekend with sadness and pessimism. Our family got up this morning to get ready for church and I told my husband, Jeremy, that I just couldn't go. I was just so down and out and while my head was telling me that church was where I needed to be, my heart was begging me to go back to bed and sleep the day away. But I gathered myself and we went to church and I heard the exact message that I needed to hear. The sermon was on seeing past your problems to God and how important it is to look to God when you are going through the good AND the bad times in life. It's something I struggle with, but I'm starting today. While I know this won't be an easy journey, I am making a choice to strengthen my relationship with God and not to stray when times get rough down this road. Thanks for joining me in this process and I look forward to sharing Kennedy's successes with you along the way.
Subscribe to:
Comments (Atom)