Once again, Kelle Hampton is raising awareness of those with Down syndrome, this time through a beautiful video compilation.
Cameran, along with many other blogging friends' children are featured, in Kelle's heartfelt video.
You can't help but be inspired when you visit Kelle and go along for her ride of Enjoying the Small Things.
Showing posts with label inspiration. Show all posts
Showing posts with label inspiration. Show all posts
Friday, January 14, 2011
Saturday, January 8, 2011
Pay It Forward
I have referenced Kelle Hampton's blog before, and I am going to once again.
Yesterday via Facebook, Kelle requested pictures of children with Ds from parents to be featured in a new fundraising effort inspired by her beautiful daughter, Nella's first birthday.
You can click here to see Kelle's post describing her fundraising efforts to benefit the National Down Syndrome Society (NDSS). Featured in this post are many other gorgeous individuals who happen to have Down syndrome. Cameran is among these photos.
A direct link to donate to Nella's ONEder fund, to benefit the inclusion and acceptance of individuals with Ds can be found here. Or you can click on the banner at the top of Kelle's page.
If nothing else, please stop by to see the warmth of the smiles and depth of the beauty each of these children possess. Children like Cameran and Nella will thank you.
Yesterday via Facebook, Kelle requested pictures of children with Ds from parents to be featured in a new fundraising effort inspired by her beautiful daughter, Nella's first birthday.
You can click here to see Kelle's post describing her fundraising efforts to benefit the National Down Syndrome Society (NDSS). Featured in this post are many other gorgeous individuals who happen to have Down syndrome. Cameran is among these photos.
A direct link to donate to Nella's ONEder fund, to benefit the inclusion and acceptance of individuals with Ds can be found here. Or you can click on the banner at the top of Kelle's page.
If nothing else, please stop by to see the warmth of the smiles and depth of the beauty each of these children possess. Children like Cameran and Nella will thank you.
Tuesday, January 4, 2011
Bring It On
Happy New Year!
I welcome you with open arms, 2011.
This year I resolve to be DETERMINED...that is, determined to accomplish my goals, to suppress any anxieties that may arise, and to challenge myself to be the best wife, mother, daughter, friend, teacher, colleague I can be.
No more half-ass.
Dammit, I am going totry to stop procrastinating.
I am going to find the balance between family, self, and work that I crave to function without resentment toward any of the former.
I am determined to lose weight. I WILL lose weight. I refuse to enter my 30s still carrying around baby weight from 21+ months ago. (Any blogging friends who are trying as well and want to buddy up, feel free to send an email!)
I am determined to learn to cook (better).
I am determined to be more frugal in the ever tightening economy and uncertainty with Ryan's job.
I am determined to stop going to Rutter's for coffee and use my Keurig on a regular basis.
I am determined to use the public library first before indulging in purchasing books.
I am determined to stick to the necessities when shopping at Target.
I am determined to continue advocating for my daughter and others with Down syndrome.
I am determined to educate others on the insensitivity and lack of class they show when choosing to use the "R-word".
I am determined to place my faith in God for situations that are out of my control.
I AM DETERMINED.
I welcome you with open arms, 2011.
This year I resolve to be DETERMINED...that is, determined to accomplish my goals, to suppress any anxieties that may arise, and to challenge myself to be the best wife, mother, daughter, friend, teacher, colleague I can be.
No more half-ass.
Dammit, I am going to
I am going to find the balance between family, self, and work that I crave to function without resentment toward any of the former.
I am determined to lose weight. I WILL lose weight. I refuse to enter my 30s still carrying around baby weight from 21+ months ago. (Any blogging friends who are trying as well and want to buddy up, feel free to send an email!)
I am determined to learn to cook (better).
I am determined to be more frugal in the ever tightening economy and uncertainty with Ryan's job.
I am determined to stop going to Rutter's for coffee and use my Keurig on a regular basis.
I am determined to use the public library first before indulging in purchasing books.
I am determined to stick to the necessities when shopping at Target.
I am determined to continue advocating for my daughter and others with Down syndrome.
I am determined to educate others on the insensitivity and lack of class they show when choosing to use the "R-word".
I am determined to place my faith in God for situations that are out of my control.
I AM DETERMINED.
Thursday, December 23, 2010
Traditions
Fellow blogger Kelle Hampton recently has blogged about family traditions, how she feels as the matriarch in charge of said traditions here.
It got me thinking about this whole living in the moment mantra. In some ways, I feel like Cameran's delays are an excuse for me to cop out of going balls to the wall in terms of festivities and such. At times I catch myself thinking, "She won't remember this [Christmas] anyway", or "I bet she still won't be interested in unwrapping gifts again", or "Do I have to bake REAL Christmas cookies?", or "We don't need a real tree this year because Cami's still little", or "We don't have to freeze at Dutch WinterWonderland this year because Cameran can't walk so we can put off going", and even, "I am too tired to finish decorating the tree." In fact, that last statement is still true. I lugged the tree out of the basement and assembled the whole thing while Cami played next to me on the floor. I even strung the lights and wrapped the ribbon. However, except for the 6 or 7 ornaments I received from this year's church ornament exchange, the tree is ornamentless.
And then I feel horrible and guilty. If I am honest, sometimes I feel downright jealous of other friends and family members whose same-age and sometimes younger children are already walking, talking, and enjoying the beginnings of such traditions.
So, instead of procrastinating, I am resolving to apply the mantra of living in the moment to family traditions starting today.
Tonight the tree will be decorated. We will walk around and look at Christmas lights. Heck, maybe we will still go to Hershey or Dutch Wonderland to see the lights.
If I am the matriarch of traditions, then I had better get started.
Cheers.
It got me thinking about this whole living in the moment mantra. In some ways, I feel like Cameran's delays are an excuse for me to cop out of going balls to the wall in terms of festivities and such. At times I catch myself thinking, "She won't remember this [Christmas] anyway", or "I bet she still won't be interested in unwrapping gifts again", or "Do I have to bake REAL Christmas cookies?", or "We don't need a real tree this year because Cami's still little", or "We don't have to freeze at Dutch WinterWonderland this year because Cameran can't walk so we can put off going", and even, "I am too tired to finish decorating the tree." In fact, that last statement is still true. I lugged the tree out of the basement and assembled the whole thing while Cami played next to me on the floor. I even strung the lights and wrapped the ribbon. However, except for the 6 or 7 ornaments I received from this year's church ornament exchange, the tree is ornamentless.
And then I feel horrible and guilty. If I am honest, sometimes I feel downright jealous of other friends and family members whose same-age and sometimes younger children are already walking, talking, and enjoying the beginnings of such traditions.
So, instead of procrastinating, I am resolving to apply the mantra of living in the moment to family traditions starting today.
Tonight the tree will be decorated. We will walk around and look at Christmas lights. Heck, maybe we will still go to Hershey or Dutch Wonderland to see the lights.
If I am the matriarch of traditions, then I had better get started.
Cheers.
I have some traditions to cultivate.
Wednesday, December 22, 2010
123 ABC ASD ...PFO
Confused already?
My life is filled with acronyms. Between life as an educator and life as a Down syndrome parent, there are more acronyms than spaces in my memory to store them.
Luckily there will be some overlap in Cameran's future, so I have a head start over parents who perhaps are not in education or psychology job fields.
SDI, DI, IEP, IFSP, LRE, PLC, RTI...
IFSP, PT, OT, SI, SLP (wish that one stood for sleep)
And then there's the added medical jargon, also chock-full 'o acronyms...
MRI, EEG, ECHO, EKG, ENT, MO, GI, BP, PA, ASD, PFO, BPS...
It's a wonder I don't go crazy with all of these abbreviated terms!
Anyway, Cameran is feeling a little better. Her fever topped out at 101.6 on Monday night. I was hoping and praying that we wouldn't need to cancel the cardiology appointment. Thankfully, Cameran slept through the night and woke up all smiles and fever-free.
I was able to leave work in order to backtrack to C's daycare and then turn back around to trek to Harrisburg for the appointment. Traffic was horrendous along the main roads in H-burg, and we arrived a few minutes late. Luckily they didn't mind, and we went back within ten minutes of our 2:00 appointment.
From there, Cameran was weighed (19.6 lbs..the kid won't gain weight) and measured (21 1/4 inches...at least she's getting longer). We then went back for an ECHO-ultrasoundy kinda thing. The tech was awesome, and he sang to Cameran while he did his thing. You know how techs are not allowed to "interpret" images?? Well, this dude rocked. After singing Cameran's praises for cuteness factor (I agree) and mellowness (a word??) despite feeling sick, he said that things looked good, and things were small enough that he couldn't get a measurement. We then proceeded to wait for what seemed like an eternity before Cameran was hooked up to her EKG. Overall she did well, only crying when the sticky tabs were pulled off. We ended with a blood pressure check and the wait...
We waited and waited. A PA came to speak with us while we continued to wait for the doctor. She explained that everything looked fine, and that Cameran does not have an ASD like they first suspected, but instead has a PFO. Her Branch Pulmonary Stenosis has resolved itself.
So instead of this...
My life is filled with acronyms. Between life as an educator and life as a Down syndrome parent, there are more acronyms than spaces in my memory to store them.
Luckily there will be some overlap in Cameran's future, so I have a head start over parents who perhaps are not in education or psychology job fields.
SDI, DI, IEP, IFSP, LRE, PLC, RTI...
IFSP, PT, OT, SI, SLP (wish that one stood for sleep)
And then there's the added medical jargon, also chock-full 'o acronyms...
MRI, EEG, ECHO, EKG, ENT, MO, GI, BP, PA, ASD, PFO, BPS...
It's a wonder I don't go crazy with all of these abbreviated terms!
Anyway, Cameran is feeling a little better. Her fever topped out at 101.6 on Monday night. I was hoping and praying that we wouldn't need to cancel the cardiology appointment. Thankfully, Cameran slept through the night and woke up all smiles and fever-free.
I was able to leave work in order to backtrack to C's daycare and then turn back around to trek to Harrisburg for the appointment. Traffic was horrendous along the main roads in H-burg, and we arrived a few minutes late. Luckily they didn't mind, and we went back within ten minutes of our 2:00 appointment.
From there, Cameran was weighed (19.6 lbs..the kid won't gain weight) and measured (21 1/4 inches...at least she's getting longer). We then went back for an ECHO-ultrasoundy kinda thing. The tech was awesome, and he sang to Cameran while he did his thing. You know how techs are not allowed to "interpret" images?? Well, this dude rocked. After singing Cameran's praises for cuteness factor (I agree) and mellowness (a word??) despite feeling sick, he said that things looked good, and things were small enough that he couldn't get a measurement. We then proceeded to wait for what seemed like an eternity before Cameran was hooked up to her EKG. Overall she did well, only crying when the sticky tabs were pulled off. We ended with a blood pressure check and the wait...
We waited and waited. A PA came to speak with us while we continued to wait for the doctor. She explained that everything looked fine, and that Cameran does not have an ASD like they first suspected, but instead has a PFO. Her Branch Pulmonary Stenosis has resolved itself.
So instead of this...
where an actual piece of tissue is missing and needs to grow shut....
Cameran has this instead...
...which is actually pretty sweet because it was so small (less than 4 mm) that they could not even measure it!
Apparently 1 in 4 people has a PFO, and they often resolve themselves, or cause pretty much benign irregular heartbeats and sometimes mild murmurs. In any case, it is continuing to improve, and it is AWESOME news that it is a PFO. Even if they were still thinking it was an ASD, it still would be just a case of monitoring.
We are very blessed. This was an excellent early Christmas present!
Sayonara Cardiologist (until next December)!
Oh the Possibilities...
The link for the full news article is here.
It makes my heart swell to see how teenagers can rally with love and support amidst the sea of cliques and popularity contests of high school. This school district is a neighbor to my home district and my teaching district. This is just one of multiple examples of how our schools provide inclusive environments to our students with special needs.
It is stories like these that put my mind at ease when my brain enters the "what if..." realm of future worries. Just another reminder of how we need to make the most of each moment.
But it is kinda cool to picture Cami in a cute little cheer outfit ;)
Friday, December 17, 2010
Major Award
You know how in A Christmas Story Bob, the dad, wins the leg lamp as his "Major Award"?
Well, it's Christmas time, and I feel like I have won my own "Major Award", except it's way cooler than an ugly lamp. I get to share my personal experiences of life with the coolest person ever--my daughter Cameran--with even more people!
Jessica over at Four Plus An Angel decided to do a Friday feature, unveiling a new mommy (or daddy) who is traveling her (or his) own personal journey through life as a parent of a child with special needs and wants to share the journey with others.
So thank you, Jessica. What a fabulous idea. I love my Major Award, and I am honored to be your first Friday feature, showing that even though there are a few added challenges to the daily schedule of the Gerbers...
Well, it's Christmas time, and I feel like I have won my own "Major Award", except it's way cooler than an ugly lamp. I get to share my personal experiences of life with the coolest person ever--my daughter Cameran--with even more people!
Jessica over at Four Plus An Angel decided to do a Friday feature, unveiling a new mommy (or daddy) who is traveling her (or his) own personal journey through life as a parent of a child with special needs and wants to share the journey with others.
So thank you, Jessica. What a fabulous idea. I love my Major Award, and I am honored to be your first Friday feature, showing that even though there are a few added challenges to the daily schedule of the Gerbers...
If you have a minute and are not already familiar with Jessica's blog, stop on over and say hi!
Happy Friday :)
Thursday, December 16, 2010
Holiday Tunes
I am totally stealing this idea from my high school friend. In no particular order are some of my favorite Christmas/holiday songs. Some are traditional classics while others are more contemporary. If you wish to listen, be sure to pause the playlist at the bottom.
and another...
And my favorite (apologies for the grainy version---the official TSO's sharing and embedding is disabled.
There a tons more songs I could add. These are just a few I am digging this year in particular.
Happy Holidays!
and another...
And my favorite (apologies for the grainy version---the official TSO's sharing and embedding is disabled.
There a tons more songs I could add. These are just a few I am digging this year in particular.
Happy Holidays!
Sunday, November 28, 2010
Thankful: Part II, Florida edition
It is easy to lose sight of what God has provided to each of us. Sure, every family has their share of hardships. And to each family, those particular hardships, whether monetary woes, diseases, family strains, job losses, or what-have-you, have the ability to rock us to the core. Yes, life is hard. Yes, life isn't fair sometimes. But if we are able to remove ourselves from our own bubble in the game of life and look at the bigger picture we just might be able to see that we have it better than billions of people who inhabit third-world countries who have no Thanksgiving day. There is always someone, somewhere whose plight is insurmountably worse than our own.
Cameran has made me very conscious of living in the moment. I sometimes struggle to use my time wisely, okay--I'm not gonna lie, I am a procrastinator, piler, and cleaning loather at heart, but I make sure that my time at home is with Cameran and Ryan. It is okay to just simply BE. Sure, I would love to go to the park more, and take more trips to the library, but sometimes snuggling and playing at home in-the-moment is alright.
Right now I am still in Florida with my husband's family, having just showered after reflecting (okay, mostly relaxing and tanning) by the pool. It is our last day, and our super-early flight tomorrow will find us back to Pennsyvania where cold weather abounds, and that is okay too . Right now I am here in Florida, in the present, thankful that I am able to BE here.
More about Florida to come...
Cameran has made me very conscious of living in the moment. I sometimes struggle to use my time wisely, okay--I'm not gonna lie, I am a procrastinator, piler, and cleaning loather at heart, but I make sure that my time at home is with Cameran and Ryan. It is okay to just simply BE. Sure, I would love to go to the park more, and take more trips to the library, but sometimes snuggling and playing at home in-the-moment is alright.
Right now I am still in Florida with my husband's family, having just showered after reflecting (okay, mostly relaxing and tanning) by the pool. It is our last day, and our super-early flight tomorrow will find us back to Pennsyvania where cold weather abounds, and that is okay too . Right now I am here in Florida, in the present, thankful that I am able to BE here.
More about Florida to come...
Thursday, November 11, 2010
Hope for the Future
We parents of kids with special needs live in the present, mainly out of survival. Dwelling on the future leads to nothing good. However, every now and again there is a news story worth sharing that represents glimmers of hope amidst our sea of uncertainty.
Have you read it yet?
Good.
About two weeks ago I toyed with blogging about a work-related "incident" where I temporarily lost my composure after a student, without thinking, decided to entertain my homeroom with said student's version of "I'm a Little Teapot" with some alternate lyrics containing the r-word and some not so nice hand gestures. Thankfully I teach in a building where name-calling, derogatory remarks, slurs, etc. are not tolerated. Suffice it to say that this poor child learned his lesson. I am not proud of my over-reaction to student's antic; I simply chalk it up to my Mama-bear alterego kicking in. Yeah, yeah, now you are all wondering what happened...Basically I told Student it was not nice to say that word, and that I was the last person Student should say it to/in front of before other students chimed in and reminded Student of my daughter prior to me running out of the room and bursting into tears.
For a number of other unrelated indiscretions this student found the way to suspension. All I can think is that Student's display made me think about how strongly I reacted knowing that Cameran is going to someday have to survive middle school and ignorant comments such as this. It made me sad. Not so much angry, but sad and hurt.
And again, I thought about posting two weeks ago when this happened. But I didn't. Until now, and for several reasons. I am now able to make it a short anecdote and not an emotionally-charged tyrade as I fear it may have been had I posted when it actually occured. Mostly though, because tonight at parent-teacher conferences, Student and family came in together for a conference with the team. Student was very subdued, and very quietly on the way out, Student made his way over to where I was sitting and apologized. And it was sincere. And, in true Jen fashion, I cried. But, it gives me hope to know that maybe, just maybe Student learned a lesson and will be one lesson individual cracking jokes at people with special needs.
Have you read it yet?
Good.
About two weeks ago I toyed with blogging about a work-related "incident" where I temporarily lost my composure after a student, without thinking, decided to entertain my homeroom with said student's version of "I'm a Little Teapot" with some alternate lyrics containing the r-word and some not so nice hand gestures. Thankfully I teach in a building where name-calling, derogatory remarks, slurs, etc. are not tolerated. Suffice it to say that this poor child learned his lesson. I am not proud of my over-reaction to student's antic; I simply chalk it up to my Mama-bear alterego kicking in. Yeah, yeah, now you are all wondering what happened...Basically I told Student it was not nice to say that word, and that I was the last person Student should say it to/in front of before other students chimed in and reminded Student of my daughter prior to me running out of the room and bursting into tears.
For a number of other unrelated indiscretions this student found the way to suspension. All I can think is that Student's display made me think about how strongly I reacted knowing that Cameran is going to someday have to survive middle school and ignorant comments such as this. It made me sad. Not so much angry, but sad and hurt.
And again, I thought about posting two weeks ago when this happened. But I didn't. Until now, and for several reasons. I am now able to make it a short anecdote and not an emotionally-charged tyrade as I fear it may have been had I posted when it actually occured. Mostly though, because tonight at parent-teacher conferences, Student and family came in together for a conference with the team. Student was very subdued, and very quietly on the way out, Student made his way over to where I was sitting and apologized. And it was sincere. And, in true Jen fashion, I cried. But, it gives me hope to know that maybe, just maybe Student learned a lesson and will be one lesson individual cracking jokes at people with special needs.
Monday, October 18, 2010
Buddy Walk 2010 in Pictures
There are no words to describe how absolutely joyous it feels to know the depth of the loving people we were surrounded by on Saturday, October 9, 2010.
If Cami wasn't, well, Cami, then I am afraid to think of all of the little things as parents we would be taking for granted. But, thanks to that magical extra 21st chromosome, we push forward, day by day, celebrating the minute, the small, the big, and the gigantic accomplishments of Cameran as if they are each a milestone that all children's parents celebrate.
Sitting up on soft AND HARD surfaces (as of the weekend). CHECK.
Reaching up when you say "Up", and not just for clothing. CHECK.
Craftily taking off both socks, jammie bottoms, and diaper tabs. CHECK.
Rocking the 4 point crawl stance like she is a sprinter ready to take off at a race. CHECK.
Maneuvering through the house in her walker that she walks bounds like Tigger in. CHECK.
There are so many more things that are exciting right now in little miss Cami's world. Right now she is fascinated with her two puppies (the fake ones that sing and say colors). They make her light up in a way that exudes radiance from her tiny little face.
But enough of that. Back to the Buddy Walk, which is what this post is supposed to be about....
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| I don't think even a panoramic camera could've captured all of Cami's Crew! |
If Cami wasn't, well, Cami, then I am afraid to think of all of the little things as parents we would be taking for granted. But, thanks to that magical extra 21st chromosome, we push forward, day by day, celebrating the minute, the small, the big, and the gigantic accomplishments of Cameran as if they are each a milestone that all children's parents celebrate.
Sitting up on soft AND HARD surfaces (as of the weekend). CHECK.
Reaching up when you say "Up", and not just for clothing. CHECK.
Craftily taking off both socks, jammie bottoms, and diaper tabs. CHECK.
Rocking the 4 point crawl stance like she is a sprinter ready to take off at a race. CHECK.
Maneuvering through the house in her walker that she walks bounds like Tigger in. CHECK.
There are so many more things that are exciting right now in little miss Cami's world. Right now she is fascinated with her two puppies (the fake ones that sing and say colors). They make her light up in a way that exudes radiance from her tiny little face.
But enough of that. Back to the Buddy Walk, which is what this post is supposed to be about....
![]() |
| Our little buddy, Caleb, did an awesome job leading the Crew around the trail, holding Cami's sign proudly! |
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| Both sets of grandparents came!!! |
Oh, and not to toot my own horn or anything, but we raised over $4,000 in support of our local Ds association, and in doing so, scored a "top fundraiser" prize of a season family pass to the Baltimore Aquarium, AND I am also the proud winner of a raffle prize....Not the hot air balloon ride, not the Signing Times DVD set, not the $50 gift card to Olive Garden.....wait for it.....I won a 3 month gym pass! I guess it really is time to slim down!
Thursday, October 14, 2010
What should come before "Welcome to Holland"
Amsterdam International
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." (see previous post below). It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time.
And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport.
And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . .
but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this damned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all!)
And their attempts at sympathy?
While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
And what you keep thinking...
but can’t bring yourself to say aloud...
is that you would give anything to go back in time a few months.
You wish you never bought the tickets.
It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport.
You will.
And as you learn more about Holland,
and see how much it has to offer,
you will grow to love it.
And it will change who you are, for the better.
by Dana Nieder, 10/2010 http://niederfamily.blogspot.com/2010/10/amsterdam-international.html
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." (see previous post below). It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time.
And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport.
And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . .
but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this damned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all!)
And their attempts at sympathy?
While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
And what you keep thinking...
but can’t bring yourself to say aloud...
is that you would give anything to go back in time a few months.
You wish you never bought the tickets.
It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport.
You will.
And as you learn more about Holland,
and see how much it has to offer,
you will grow to love it.
And it will change who you are, for the better.
by Dana Nieder, 10/2010 http://niederfamily.blogspot.com/2010/10/amsterdam-international.html
Falling Short 31 for 21
As I began this blog in February I realized that it was going to be a personal challenge for a multitude of reasons: being a new mom, being a new mom to a child with special needs, being a new mom of a child with special needs who has a ton of papers to grade because she is a teacher, wife-y things, time management issues, procrastination issues....I could go on and on. I know myself, and I know that I have never been a good journal keeper. Baby book-keeping...Fahgetaboutit. I knew when Cameran was 11 months old that I needed to do something to record memories, and the result is this blog. As far as I know her (two) baby books are collecting dust in a closet in one of the rooms upstairs.
I think my issue is that my days and nights don't revolve around Down syndrome. They revolve around Cameran (and Ryan, too). For me to focus on Ds itself makes it feel like that is our whole life and all we think about with Cameran. That is absolutely not the case. So, for the rest of October I am going to attempt to post more frequently and to continue with the spirit of 31 for 21, but mainly I am going to focus on my DAUGHTER and our family, and Down syndrome can come along for the ride.
| HAPPY OCTOBER!! |
Friday, October 8, 2010
T-Shirts and Wagons and Buttons, Oh My; 31 for 21 Day 8
I am ready to burst with anticipation over tomorrow's Buddy Walk. I can't wait. It is going to be one of those sleepless nights because
A. I need to finish making updated Team walk shirts.
B. I need to tape/glue the "enhancements" to Cameran's red wagon.
C. I need to remember the buttons that my friends at daycare created.
D. I can't wait to see our family and friends gathered in a sea of blues and teals in support of Cameran.
But most of all, I am overwhelmed with the love and support of friends of friends whom Ryan and I do not even know personally, who have supported Cameran's Crew. In the past 24 hours, we have more than doubled our walk donations, and are now at over $3,000! I will never forget this.
This is year two, and I can't imagine life without little Cameran and all of her chromosomes. Without Cameran, we would never know such a great network of blogging, online, and real-life of special needs families. It all is rather amazing. And humbling.
Thank you, Columbus, for getting Amerigo Vespucci's credit for discovering America and allowing millions of Americans the pleasure of a three day weekend.
Happy Columbus Day Weekend!
A. I need to finish making updated Team walk shirts.
B. I need to tape/glue the "enhancements" to Cameran's red wagon.
C. I need to remember the buttons that my friends at daycare created.
D. I can't wait to see our family and friends gathered in a sea of blues and teals in support of Cameran.
But most of all, I am overwhelmed with the love and support of friends of friends whom Ryan and I do not even know personally, who have supported Cameran's Crew. In the past 24 hours, we have more than doubled our walk donations, and are now at over $3,000! I will never forget this.
This is year two, and I can't imagine life without little Cameran and all of her chromosomes. Without Cameran, we would never know such a great network of blogging, online, and real-life of special needs families. It all is rather amazing. And humbling.
Thank you, Columbus, for getting Amerigo Vespucci's credit for discovering America and allowing millions of Americans the pleasure of a three day weekend.
Happy Columbus Day Weekend!
Friday, October 1, 2010
Down syndrome Awareness Month
I am sitting at a quaint cafe table waiting for our dinners, enjoying the crisp fall air and ever present breezes that accompany the ushering in of autumn. Fall is (besides summer for obvious teacher-ish reasons) my favorite season without a doubt.
Reasons for loving fall...
1. Semi manual labor without feeling like having just left an Indonesian sweat shop.
2. Apples and cider
3. Local fall festivals
4. Driving through the mountains, enjoying the motley assortment of colored leaves while awaiting the destination.
5. Halloween
6. Thanksgiving
7. Fall decorations
8. My dad, the hunter. Who willingly chops down corn stalks for my friends and me so we avoid paying $5 a bundle at the local nurseries.
9. Earth tones-I wear 'em year round anyway, at least in Fall I blend in.
10. Passing out candy to Trick or Treat-ers
11. Finding Peanut an awesome costume.
12. Celebrating Ryan's birthday
13. Planning holidays
14. And now, continuing to be a voice for Cameran and the special needs community...October is also Down syndrome Awareness Month (and you thought it was just breast cancer month!)
15. Annual Buddy Walks
I have more reasons than ever to love Fall. How about you?
Reasons for loving fall...
1. Semi manual labor without feeling like having just left an Indonesian sweat shop.
2. Apples and cider
3. Local fall festivals
4. Driving through the mountains, enjoying the motley assortment of colored leaves while awaiting the destination.
5. Halloween
6. Thanksgiving
7. Fall decorations
8. My dad, the hunter. Who willingly chops down corn stalks for my friends and me so we avoid paying $5 a bundle at the local nurseries.
9. Earth tones-I wear 'em year round anyway, at least in Fall I blend in.
10. Passing out candy to Trick or Treat-ers
11. Finding Peanut an awesome costume.
12. Celebrating Ryan's birthday
13. Planning holidays
14. And now, continuing to be a voice for Cameran and the special needs community...October is also Down syndrome Awareness Month (and you thought it was just breast cancer month!)
15. Annual Buddy Walks
I have more reasons than ever to love Fall. How about you?
Tuesday, September 28, 2010
18 months and Rockin it out!
September has been full of appointments and birthdays and puke and recovery and shots and fevers, but perhaps most of all ROCKING!!! Check this snippit out that I captured on the first day I caught Cameran doing this on her own...
Go Cameran! I have a feeling that little Miss Cameran Leah is going to be doing lotsa things all at once, making for some interesting days to come in the Gerber household....
Ryan's birthday was pretty mellow. We went to Lancaster for the day, shopped, and ate at a restaurant on the outskirts of the city. Having the evening to ourselves was definitely the highlight!
That same weekend we also parted with our younger dog, Nala, who is now living at the home of one of Ryan's coworkers. This family has a house full of kids, and has more time to devote to Nala's needs. So, even though my head and my heart disagreed at first and I miss her, I know she is better off. Jasmine has been loving life as an only doggie again too. She gets the attention that Nala hogged for 4 1/2 years. Not only that, but she is actually mellow enough to keep inside AND in the same room when Cameran's entourage is at the house doing various interventions! Double plus. So, all in all, it is a good change.
Shots were Friday. By shots I mean Cameran's 15 month and some of her 18 month shots since she was unable to receive immunizations while on her seizure steroids. She never tolerates them well, and this weekend was no exception. Finally, four days later, she is beginning to feel better and her fever broke for the first time today.
We are busy gearing up for this year's Buddy Walk! Cameran's Crew is growing still, and we have 6 fundraisers including myself. So far we have exceeded $1,000 in support of the inclusion and acceptance of people with Down syndrome. I never used to be much of a fundraiser-ish type of person, but I have shamelessly and probably to some, obnoxiously posted and reposted links to Cameran's page of Facebook, if for no other reason, to raise awareness (and share a cute picture too!)
Finally, here are a few pictures from the past few weeks...
Go Cameran! I have a feeling that little Miss Cameran Leah is going to be doing lotsa things all at once, making for some interesting days to come in the Gerber household....
Ryan's birthday was pretty mellow. We went to Lancaster for the day, shopped, and ate at a restaurant on the outskirts of the city. Having the evening to ourselves was definitely the highlight!
That same weekend we also parted with our younger dog, Nala, who is now living at the home of one of Ryan's coworkers. This family has a house full of kids, and has more time to devote to Nala's needs. So, even though my head and my heart disagreed at first and I miss her, I know she is better off. Jasmine has been loving life as an only doggie again too. She gets the attention that Nala hogged for 4 1/2 years. Not only that, but she is actually mellow enough to keep inside AND in the same room when Cameran's entourage is at the house doing various interventions! Double plus. So, all in all, it is a good change.
Shots were Friday. By shots I mean Cameran's 15 month and some of her 18 month shots since she was unable to receive immunizations while on her seizure steroids. She never tolerates them well, and this weekend was no exception. Finally, four days later, she is beginning to feel better and her fever broke for the first time today.
We are busy gearing up for this year's Buddy Walk! Cameran's Crew is growing still, and we have 6 fundraisers including myself. So far we have exceeded $1,000 in support of the inclusion and acceptance of people with Down syndrome. I never used to be much of a fundraiser-ish type of person, but I have shamelessly and probably to some, obnoxiously posted and reposted links to Cameran's page of Facebook, if for no other reason, to raise awareness (and share a cute picture too!)
Finally, here are a few pictures from the past few weeks...
Labels:
birthday,
Down syndrome,
family,
Firsts,
inspiration,
video
Seizure-Free!!! A post from August 23rd...
Today was my first day back to work (just like every August in the life of a teacher). I needed a refresher in just how long it takes to get myself motivated to get up and ready after 4+ snooze button pushes plus getting Cameran ready for daycare aka Snot Haven. Needless to say we were pushing the envelope today. Tomorrow we have to do better. Wednesday is a must. In any case, it went. I didn't get to stay and get my room ready for a little longer because Cami had her EEG follow-up...
As the title gives away...she is seizure free!!! Her brain waves are completely normal, and now we are just beginning a slow decrease of the topamax. Three weeks from now Cami will be drug free!!! (Okay, I lied. There's still Zantac to be had...)
We are so thankful. Cameran is smiley and giggley again!
As the title gives away...she is seizure free!!! Her brain waves are completely normal, and now we are just beginning a slow decrease of the topamax. Three weeks from now Cami will be drug free!!! (Okay, I lied. There's still Zantac to be had...)
We are so thankful. Cameran is smiley and giggley again!
Friday, August 20, 2010
When you just know
Sometimes you just know...
Like when I met Ryan. I just knew.
Like when I went wedding dress shopping. Tried on tons and tons, but went back to that very first dress. I just knew.
Like when I call my mom and it doesn't even ring because she is calling me at the same time. We just know.
Like when I was at the shore two summers ago and had to pee constantly, never thinking I could actually be pregnant given the fertility dude's odds. I had that feeling. I just knew. But I waited a week before doing the stick piddle. Now I have Cameran.
Like when I posted on Facebook about how wonderfully lovable my youngest dog is and how she needs a home that can give her more attention...I don't want to give away Nala, but the difference between my head and my heart tells me that there is someone out there that can give her way more attention that she currently receives. And by no means is this dog neglected, she just likes attention 24/7 and will vie for it. Selfishly I tell myself that I love her and that is enough, but is it really? And the same day of posting two people I know or are friends of friends inquired. A sign? I am telling myself so, and it gives me more peace in knowing that maybe Nala is meant to be with another family.
Like when today Ryan had set up appointments to view several houses in a neighboring town. Liked the first one, hated the second, couldn't get into the third, but the 4th one....It has "Gerber" written all over it, and so I hastily posted on facebook about wanting to sell our house. Already there is interest. A sign? I hope so.
It's like God is telling us that for all of the challenges and obstacles we have been through with fertility and marriage and Down sydrome we are blessed and that His timing is perfect. Maybe this will be one of the very few times that things ALL fall into place.
Only He knows.
Like when I met Ryan. I just knew.
Like when I went wedding dress shopping. Tried on tons and tons, but went back to that very first dress. I just knew.
Like when I call my mom and it doesn't even ring because she is calling me at the same time. We just know.
Like when I was at the shore two summers ago and had to pee constantly, never thinking I could actually be pregnant given the fertility dude's odds. I had that feeling. I just knew. But I waited a week before doing the stick piddle. Now I have Cameran.
Like when I posted on Facebook about how wonderfully lovable my youngest dog is and how she needs a home that can give her more attention...I don't want to give away Nala, but the difference between my head and my heart tells me that there is someone out there that can give her way more attention that she currently receives. And by no means is this dog neglected, she just likes attention 24/7 and will vie for it. Selfishly I tell myself that I love her and that is enough, but is it really? And the same day of posting two people I know or are friends of friends inquired. A sign? I am telling myself so, and it gives me more peace in knowing that maybe Nala is meant to be with another family.
Like when today Ryan had set up appointments to view several houses in a neighboring town. Liked the first one, hated the second, couldn't get into the third, but the 4th one....It has "Gerber" written all over it, and so I hastily posted on facebook about wanting to sell our house. Already there is interest. A sign? I hope so.
It's like God is telling us that for all of the challenges and obstacles we have been through with fertility and marriage and Down sydrome we are blessed and that His timing is perfect. Maybe this will be one of the very few times that things ALL fall into place.
Only He knows.
Thursday, June 17, 2010
Sweet, sweet summertime
I love everything about summer. And not in the "I teach just to have time off 2 1/2 months a year" kinda way. (Although it is a undeniable perk of the job.)
To show my deepest appreciation to this blessed season here is my...
To show my deepest appreciation to this blessed season here is my...
"Ways That Summer Rocks ..." List
Sleeping in (kinda-thanks Cameran).
Staying up late(r).
Watermelon
Corn on the cob
Steamed crabs
Ice cream truck
Snowballs from Mason Dixon Farmers Market
Fireflies at night
Swimming with Cami in the kiddie pool
Sitting on the deck
Refreshing margaritas on the deck of a restaurant
The beach
Swimming in the ocean
Beach towels
Suntan lotion smell
Ice pops
Summer re-runs
Summer Blockbusters
Reading
Reading on the deck
Morning coffee that I can make at my house and not rush to drink
Homemade Iced Tea
Going to Illinois
Taking walks
Going to the park
The library
Not thinking about work
Relaxation
No agenda
Spontaneity
Concerts
Ball games
Cooking out
Cooking out with friends
Cooking out at my parents' house
Veggies on the grill
Taking pictures
Window shopping
Real shopping
Being with Cameran
Being with Ryan
Sprinklers
Watching the dogs play in the hose
Watching Cameran play outside
More daylight
Nature's sounds
Frozen mochas (who am I kidding--this is a year-round thing)
Thunderstorms in the distance
Lightning
Rainbows after a storm
Scent of fresh rain
Lake Michigan
Navy Pier
Cellular Field (White Sox)
Wrigley Field
Field Museum
Michigan Avenue
Lake Michigan
Navy Pier
Cellular Field (White Sox)
Wrigley Field
Field Museum
Michigan Avenue
Honeysuckle
Tiger lilies
Hydrangeas
Gerbera daisies
In-law's pool
Natural tans achieved from being outside and not from trying to tan
Fall television show teasers
Watching corn grow
Chincoteague Island, Va
Chincoteague Island, Va
(This year only) Cameran finishing her seizure meds
Watching the dogs chase the bunnies that make their nest under our deck and not being able to get them
Tom's Cove Campground
Mister Whippy's Ice Cream
Tom's Cove Campground
Mister Whippy's Ice Cream
Finding the perfect groove in the sand to lie on
Getting as close to the water as possible and discovering the tide is coming in and needing to move back
Finding conch shells in the ocean with my toes with Mom
Pods of dolphins swimming near the sandbar
Not wearing makeup
Wearing bum clothes all day long
Lighthouses
Wild ponies of Assateague
Petting the Chincoteague ponies in the corral at McDonald's
Flip flops
Pedicures
Badminton
Sherry's Ice Cream
Sunbleached hair
Drives just because
Yard Sales
Discovering awesome new "driving songs" to belt out with no one else in the car
New playground equipment at Cousler Park
Doing as many of the above as possible or none of the above on any given day
Wild ponies of Assateague
Petting the Chincoteague ponies in the corral at McDonald's
Flip flops
Pedicures
Badminton
Sherry's Ice Cream
Sunbleached hair
Drives just because
Yard Sales
Discovering awesome new "driving songs" to belt out with no one else in the car
New playground equipment at Cousler Park
Doing as many of the above as possible or none of the above on any given day
The list goes on I am sure. This will have to do for now. Happy summer!
Thursday, May 20, 2010
She's famous!
Cameran is a local (albeit anonymous) celebrity! We took a tour of a newly opened special needs therapy facility a few weeks ago and the leader of our local Down syndrome organization asked if Cameran and another little boy would be able to pose for a picture to be used in a new member pamphlet. I said sure, why not?
Apparently the photo-op made its way to the Daily Record because low and behold on page 9D is Cameran's picture. The caption reads "Pictured center are two Leg Up Farm visitors having a rest."
So stinking cute. I can't wait to see the color version!
Here is also a Daddy/Daughter picture that makes my heart melt. I love my two favorite people.
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